Positive response to treatment and now cancer free.
Friday 5th March, told by consultant good news and PET/CT scan showing him nothing of concern now.
Regular check ups will be the norm to monitor.
Latest update – ( scroll to end of blog for latest updates)
• 11 July 2019 – Post scans check ups – Medication and Return to Work
Let me introduce myself
My name is Ian going on 60 and living in Dundee Scotland.
As at 5th March 2019 I was told that my treatment had worked and that I was now cured and cancer free. It’s a good ending to what is a really tough journey, but please join me on what I recorded throughout.
I was diagnosed with stage 1 throat cancer in July 2018 and since then I decided to record my journey and treatment, warts and all, for two reasons. This first one is selfish in that I find it therapeutic to log my journey as I go and as a reminder how far I have come on this difficult journey. The second reason is that I genuinely hope that by sharing my journey I can help and raise awareness for others who find themselves in similar circumstances as well as their families and loved ones.
Make no mistake its not easy. The side effects from treatment are many and often over a prolonged recovery period. There is no elevator option post treatment and you have to take the stairs.
I have also recorded my journey with a weekly update on Cancer UK website titled “Radiotherapy for Throat Cancer”. My user name is Anchor1707 and you will find me there. Quite a good thread with lots of contributions from others as well as many tips.
For ease of reference I have compiled a bunch of tips all together, not all my own, but picking up others as well and I hope this helps to see in a complete format. These are at the end of the blog.
So hang on for the ride – its not an easy one but I remain positive for the future with a high chance of cure.
Will not dwell on too much as the blog is really about the cancer itself as well as treatment and recovery but I pretty much had a sore throat last January and after around 3 attempts prodding GP, was finally referred to ENT. Was told it was flux and possibly tonsillitis . Was prescribed medication for flux which I had a major reaction to which led to four weeks chronic diarrhea and a weeks admission to hospital on steroids and 3 months thereafter. Was also told no cancer as nothing was there. I did ask.
Referred to ENT again after hospital and I assumed that as given all clear around a month prior re cancer, given symptoms were still there, I assumed I was to be told that it was indeed tonsillitis and to be told I would need them removed.
Consultant put scope down nose and throat and took some pics. I’m not really sure if biopsy taken to be honest but definately pictures. Told me he was a little unhappy and thought there was a lesion in throat area. Got two other consultant colleagues for 2nd opion who agreed.
I specifically asked is this cancer and told “yes, unless we are proven wrong, it pretty much looks like cancer” I was then told I would be fast tracked whatever that meant ( seen within 30 days) and that I would be prepped for surgery pretty much there and then. So from one minute assuming tonsillitus the next minute I have cancer and told immediate prep to have surgery to remove tonsil and presumably whatever cancer they could clear.
Funnily enough I was calm and matter of fact for some reason and hard to desribe. Suppose we are all different and my partner was quite tearful when I phoned as she was thinking tonsillitis date. Didn’t tell my kids or my mother at the time. I’ve told them now and I guess my positive reaction to all of this has helped them as if they don’t hear or see me worrying or upset then they tend not to. Same with my partner, and I think my positive outlook has helped her over the initial shock and is now far more positive(ish) along with myself.
So first meeting with ENT oncologist consultant confirmed that it was indeed Throat Cancer but was Stage 1 and although not 100% guarantee was looking to have this cured. He was upbeat and positive as I was and I think this all helped my partner who started to take my feed of still joking around as normal, sometimes with gallows humour ( not always appreciated) but nontheless helped me as I have never really wavered or been down since diagnosis, through treatment or recovery. I have maintained a positive attitude and pretty much got on with whatever was going to be thown my way. After meeting the support team sat down with me and my partner and discussed what the outline plan was and to allow any questions. They were really nice.
So, treatment plan was surgery to have right tonsil removed and assume whatever cancerous cells they could clear as well. Was also told dental work would possibly delay treatment as would need to see the dental consultant first. The reason for this is because radiotherapy can effect the back teeth and cause to crumble which then in turn can be more problematic to deal with so the solution is to remove all your back teeth. Not all patients required to have done, but the area where I was having treatment required back teeth removed. Seen dental consultant who asked if I wanted him just to start pulling them over a couple of days. Actually no, I didn’t really want that and requested to get all done at once under anesthetic.
I will try and log this in chronological order but I may get out of sync now and then but should pretty much be as it all happened.
TREATMENT – PRE RADIOTHERAPY
So first thing was into surgery to get tonsil removed and time to recover from that. Damn, that was a little uncomfortable and ask any adult who has had tonsils removed and you will get the same dramatic stories of pain and discomfort. You get through it, but at the time it is, lets just say a challenge !
Met with ENT oncologist consultant again who confirmed surgery went well and after dental work, I would be given no chemo but 6 weeks of radiotherapy on a daily basis (30 sessions). Was warned that treatment for throat was one of the most difficult but one with the highest success rates and his aim was for one of cure.
Because of where it is, it effects so many parts like throat/neck muscles/swallowing/tongue/taste and therefore why treatment and recovery can be a little challenge of a journey.
BUT YOU GET THROUGH IT !
Also had to have a mask made and to see the speech therapist. It’s funny how from my diagnosis I had a whole army of people now looking after me and each with a different role. Made me very humble to see such professionalism and teamwork at highest level kick in and how they coordinated everything – just for little old me. I have the most utmost respect and praise for everyone and there are many who actually get involved for just one patient.
Next bit of fun was surgery again and back teeth removed. Err im not really going to gloss over and say was fun because it wasnt. Even allowing for man dramatics and pain, the recovery from my gums delayed treatment and just a little warm up to the main event. Ouch! was sore !
Met with Speech and Language specialist who was lovely and again, scope down nose/throat and a series of tests pre treatment regaring my swallowing and throat muscles. Given milk to drink along with a biscuit and also bit of banana as she tested area. Was also given a really helpful booklet as not many mention on theads, but it is really important to do your exercises with throat and tongue pre and post treatment as you benefit in recovery period by using your throat and neck muscles.
Mask made – not as bad as I thought. I should tell you here and now that I am very claustrophobic so I thought I’m going to struggle with this and during treatment.,Not a bit ! I’m not sure where come from but you just get on with it and mind over matter as has to be done. You lie down on a trolley thing and a plastic mesh is then put in hot water then molded to your face and shoulders. I thought twice about putting picture of mask up but hey ho its a fundamental part of the treatment and rationale of the blog is to share my journey so I decided to show you with my mask on with no intent to upset anyone. Just to note that I had two made as first one was not tight enough so I took it home hence pic at home but you do actually get to keep your mask after treatment, if of course you want it.
My friend for 6 weeks
So no more pictures but don’t fret about the mask. It’s about to save your life and is only on for 10 minutes at a time and very quickly passes honestly, and you definitely get used to it and becomes routine.
Just before treatment journey begins I should add that partners contribution cannot be underestimated. They are a tower of strength and a great help during treatment. It has often been said that partners wonder what more they can do do help, but being there and little things help, even getting water, attending appointments, listening, understanding that when you need to sleep – you need to sleep. You might have a feeding tube and help with that. Picking up medications,seeing to housework and also coping with their own thoughts, worries about you and coping with their own families and jobs is just a small part of what they do. So a big hats off and major hugs to all partners out there as you help more than you will ever know.
I should also mention the absolutely fantastic support team from all in the NHS. Far too many to mention and you will be surprised how many are involved with your treatment but you are going nowhere without them an I have an eternal gratitude to them all.
Consultant is fantastic and the support team before and after treatment is wonderful, re assuring and so professional. They are always there for you and are dedicated life savers and am so glad I have them with me on my journey. So before this starts sounding like an award ceremony speech lets start the real ride.
So now we start the 6 weeks of radiotherapy and 30 sessions. ( was told 30 sessions or so is maximum body can take)
This is when all the prep has been done, all your dates are in ( I will mention here as well as in the tips but I strongly recommend trying to get your radiotherapy times first thing in the morning. It saves your day being broken up, gets treatment over and lets you get home for medications and rest ) I was lucky in that I stay around a ten minute drive from the hospital so that was a bonus. Treatment centre just at side of hospital with own car park, which I got a free sticker for every day and counted my blessings for this as in and out quite quickly.
So the format I will continue with is one that I have deployed since my treatment started and thereafter my recovery period, which is still continuing, and I log on a weekly basis on Cancer Research UK and will continue to now update my blog on a weekly basis or with any important dates or events. My thread on Cancer Research UK is under the Living with Cancer Section and titled “Radiotherapy for Throat Cancer”. My user name is Anchor 1707 and you will find me there along with others who contribute.
If you do find this helpful and I really do hope that you do, then please come back now and then and you will find it updated.
You are also free to email me and I will answer any questions I can and also help you in anyway I can.
Please also share with your loved ones/friends or anyone who you feel might benefit from reading. I also do not mind this being shared with any medical professionals.
I will cut and past from my blog on Cancer Research UK as I have kept that up to date each week and saves me retyping and trying to remember everything.
Grammar and spelling may not be 100% but hey ho you will get the gist
WEEK 1 – RADIOTHERAPY
Basically I have been diagnosed with Stage 1 Throat cancer.
The prognosis is hopeful and I remain cheerful and positive. Its taken a while for the actual treatment to start so glad to get on with it at last.
I started my first day of radiotherpy today and have 29 more treatments to go over 6 week period.
I have made a little computer programme that logs my side effects and summarises episodes of each heading and I plan on keeping a daily log of how things went/ how I feel ( good and bad ) and map out my journey. I find it therapuetic.
I will share periodically in the hope that even if it helps one person as well as myself it will be worthwhile.
So day 1 was fine and I dont really feel any difference or notice anything.
One small point is that the mask made was slightly harder than when it was first made as it has set little harder over the weeks and was a little more moveable on the day made.
Took about 10 mins for actual radiotherpay treatment itself.
Drove home fine.
Meet with advanced practioner nurse every Thurs to discuss progress.
Aware might be a little different along the way but all good after day 1.
WEEK 2 – RADIOTHERAPY
Well week 2 is now over and again so far so good.
Little more tired and would say started to notice more mucas but that apart I have not really felt any discomfort or noticable side effects.
Aware going into week 3 next and potentially when more side effects will kick in but will have to deal with as and when they arise.
Will post another weekly update next week , good and bad and hope helps someone in similar circumstances.
Happy to answer any questions based on my own personal journey.
Staff in radiotherpay are wonderful and consider it a blessing we have the wonderful NHS.
Not always right but by and large wonderful system and people and when you consider the cost of treatments we do not have to worry about the cost or health insurance etc over and above the diagnosis.
Kind regards to all
WEEK 3 – RADIOTHERAPY
Well end of week 3 now and the initial 2 week honeymoon period with treatment is over as side effects really started to kick in this week from around Wed onwards.
Tongue feels quite swollen and buring at back of mouth and gums sore where teeth removed.
Sore to swallow or even yawn. Can’t open mouth fully now/
No redness or skin irritation as yet.
Taste buds have got to pot and its a weird sensation as you eat with your eyes as well.Most foods kinda disgusting and few things I can take that still has a bit of taste and easy to go down.
I take cornflakes when soggy and eating plenty ambrosia rice/home made rice with cream.
Funnily enough Drumsticks squashies swwets are nice and soft and easy to go down as well as still tasting ok. Having to eat as a function now and not really because I look forward to as it tastes weird and little hard to swallow sometimes.
I am drinking 2-3 lires water or ribena each day which I am told helps with the mucas etc.
Also now on oral morphine from yesterday and its particularily sore during night.
Take 2 soluable paracetamol 4 times a day and also have Difflam oral rinse which I find helps as well.
Still trying to stay positive and was told it is a tough treatment but I am getting all the support and help from the wonderful staff.
Just take each day as it comes and can still work from home, so far, during day for a few hours and nap in afternoon.
Although tough, has to be done and I guess no pain no gain applies here and working towards the light at the end of the tunnel.
I did say I would log good and bad but with the appropriate treatment/medication and support, edge on in my journey.
I wish you all well and will post end next week in the hope that it helps at least one person on a similar journey.
WEEK 4 – RADIOTHERAPY
so end of week 4 into my 6 week treatment plan and progressing along.
On morphine/paracetamol to help manage pain and am now drinking at least 3 to 4 litres water a day which I find helps.
Difflam mouthwash helps and find refreshes mouth as does caphosol mouth wash i was given in addition.
At the moment mostly all under control but am struggling a little with eating. Don’t have much appetitte but have to force myself to eat as a function rather than enjoy. Taste buds all to pot at back of tongue and most things tates metallic. Am on drink supplements which I can manage to keep caloroies and weight up and I can manage chicken soup/ambrosia rice not to bad.
Lots mucas during night and up every couple of hours to clear and to go to loo, but also have a drink before falling back to sleep. I do think drinking as much as possible helps and have been encouraged to drink as much as possible by nurses/radiotherapy staff
Nice tip from Hazel on here to get soft CURAPROX toothbrushes from Amazon and more gentle to clean teeth with so thanks again to Hazel.
2 humidifiers I bough I use day and night and put eucalyptus oil in and feel helps as well.
Still have a small nap in afternoon as tired and takes edge off but also still managing to work away at home and keeps brain active.
Side effects pretty much what I was told to expect at this stage and staying positive and monday sees me goinf into my 5th week and 10 treatments to go. Will deal with anything additional as it comes along and seeing dietician and speech therpapist Monday after my treatment for a catchup.
Have a fabulous team at my hospital in Dundee and cannot praise them enough for care/support and advice. The whole support infrastructre has been magnificent and inspires confidence when I have them behind me.
Will post again end next week but happy to help anyone I can with any questions or tips on what i have being doing. Little tips can sometimes help a lot, like the Curaprox toothbrush may seem minor, but that little tip is a blessing for me as now no real discomfort with teeth cleaning.
I wish you all well.
WEEK 5 – RADIOTHERAPY
Just finished week 5 treatment this morning and one more week to go.
They have upped the morphine and am now on Fluconazole for oral thrush they found yesterday.
Feel like a chemist here with all these meds/mouthwashes but its all fine and would say genrally still ok and not experiencing anything I was not expecting.
Little more tired and quite bit mucus comes up during night, but get back to sleep quite easily.
Not been on solids all week as they taste gross and metallic and have been sticking to liquid/soft meals.
On Ensure drinks that they gave me and was told equivalent of a small meal plus I can eat chicken soup/ambrosia rice/custard and full fat yoghurt which I enjoy.
Got weighed yesterday and surprisingly had put on a little weight, which they were please with as was I.
All in all not really complaining and on the home stratight for treatments next week with only 5 more to go, although I know the side effects will continue, at least no more daily treatments.
Was also given a nebuliser yesterday and have used a few times, but not really sure if making any difference. Does anyone know if I can put a couple drops eucalyptus in with the saline as love the smell and alwasys thinks helps clear head.
Thank you to all that reply as its helpful to share my experience as not only do I find it therpeutic, i really do hope that it can help at last one person. Treatment/side effects etc are not brilliant but you get through it and am still trying to stay positive.
WEEK 6 – RADIOTHERAPY
Well finally finsihed my 6 week treatment this morning and strange feeling as mask came off for last time (no i didnt keep it, already had one) and although some kind of relief this part finished, aware still have some recovery period to go.
Met with advanced nurse practinioner afterwards and just a little concern I have not been eating and drinking enough this past week/10 days and lost around 9/10 pounds ( which normally I can afford to), but a lot to lose in short period.
So basically have been prescribed 6 ensure drinks a day for 2 weeks before weel being clinic follow up meetingin cpl weeks amd have to try and make sure that I take these drinks along with 4 litres water a day.
That plus all my medications lol
So for some reason I feel a little flat and thought I would be more upbeat as mask came off, but little blip, i feel, re weight loss and having to have 6 ensure drinks a day plus 4 litres water.
But on the bright side, its part of recovery and told its all necessary to help recovery quicker so I will do as im told and heed the advice given and knuckle down and just look upon as additional medication to be taken for only a little 2 weeks and hope some appetite comes back soon afterwards.
At least I have taken 3 weeks annual leave from work next week, so plenty of rest and chilling doing not a lot.
what happens now……
This is actually the most challenging time now the treatment has stopped and the side effects can become more of a challenge.
What I have learned now is that there is no set time for recovery and it can be a bit of a shock when you don’t bounce back as quickly as you would think and assume that you should be fine after a couple of weeks now treatment is finished.
That is so not the case and one that many underestimate be it patient/partners/family/work etc.
There are many factors that determine our recovery phase and the extent of time it will take to feel what we would consider normal again.
So first thing to mention as the number one factor
WE ARE ALL DIFFERENT
I cannot place enough emphasis on this as it’s so true.
I have logged my phase recovery below this section and while there are side effects that are guaranteed to appear for all, the recovery time will be different.
Do NOT be alarmed if you feel you are lagging behind and thinking you should be the same as you were before treatment after a few weeks. Not going to happen.
From a conversation with my consultant and specialist nurse thereafter, they re iterated a few things.
1. It can take up to a year to eighteen months for our bodies to fully recovery back to normal. That is not to say we won’t feel/look well until that time, but it is a time frame that the medical profession often quote.
2. Again from the conversation with my specialist nurse is that the recovery time will also very much be based on
a. What type of tumor you have
b. What size of tumor
c. Where exactly the tumor is
d.Whether spread to nodes etc
e. The treatment plan that is mapped out for you
f. Another factor may be that you go into treatment reasonably fit which will stand you in good stead to the other end of scale where you start treatment not so fit or even a little weak.
According to my specialist that even after treatment our bodies are still running a marathon so in that context will explain why we feel to tired all the time.
I was misdiagnosed before my treatment as they thought just flux/tonsillitis, had a strong reaction to the medication I was given and had four weeks of chronic diarrhea, then in hospital for a week on steroids then shortly afterwards started treatment for my throat cancer diagnosis so in all probability started off in not the best of health. – marathons a no no even when i was fitter !
As there will be different sizes and types of tumor as well as position, there will be a range of treatment plans they will deploy. One example is depending on where the actual tumor is will depend on whether your back teeth will be removed pre treatment or not.
Not all patients have done but it does have a further impact on recovery. I had to have all my back teeth out before radiotherapy started. Basically removed as radiotherapy can cause teeth to crumble and can cause complications during/after and the solution is to remove them
I thought it pertinent to outline this before going into more detail of post treatment as this is based on my personal experience and as stated we are all different, others will experience a quicker recovery to mine and others may be a little longer and others may be around the same
A very rough guide and depending on the type of work you do may be six months before a return to work. I returned after around week 9 post treatment and my work is all about using concentration for long periods of time but no physical work. Again this can be just as tiring. It was also not really recommended and I think they would have preferred me looking at the six month timeline. General medical opinion is that I am back to work too early.
I may still have to go off work again as I am still very tired,especially after 4-5 hours of work concentration, so will just play it by ear at the moment.
So the strong message is that there are guaranteed side effects all will have which I will detail more below but to remind all that recovery time is a very personal one and it is wise not to use any other particular individual as a barometer and assume that you will fall into their pattern of recovery period either short or long. Side effects can be pretty much be the same but timeline different.
Your recovery time will very much depend on the factors I mentioned above and your own body will set the timeline.
Do not get alarmed or worried if you still feel fatigue or still struggle with appetite for example ( probably the most two common side effects that linger). It will also help to discuss with your support team as they will re assure you and guide you as necessary.
Sorry a bit of a long ramble before I share my recovery week by week and tips thereafter but I do hope that this gives it some context and also some reassurance over any misconceptions over what should be deemed as “normal recovery” times.
More importantly do not worry or dwell upon if you not bouncing back quickly after treatment finishes as it’s perfectly normal.
I have also shown below the official explanation from Cancer Research UK for TNM stages and what you might see on your diagnosis.
TNM STAGES –
from Cancer Research UK
There are different ways of staging cancer of the larynx. The TNM staging system is the most common way. TNM stands for Tumour, Node, Metastasis.
Doctors use the T part of the TNM system to describe the stage of your cancer. They call this the T stage. Your T stage refers to how far your cancer has grown within the larynx and surrounding tissue.
Doctors sometimes divide cancer of the larynx into early stage disease, locally advanced disease and advanced stage disease.
They might also use a number staging system. But they are more likely to refer to the T stages. This is different to the number staging system.
Tumour (T) describes how far your cancer has grown within the larynx and surrounding tissue.
The exact T staging of cancer of the larynx varies. It depends on which part of the larynx your cancer started in.
Cancer can start:
- above the vocal cords (supraglottis)
- on the vocal cords (glottis)
- below the vocal cords (subglottis) – this is rare
There are 5 main T stages for cancer of the larynx – Tis to T4.
Tis (tumour in situ) means the cancer is very early. It is contained in the top layer of the skin like covering of the larynx (mucosa). It has not spread into any surrounding tissue.
T1 means the tumour is only in one part of the larynx and the vocal cords are able to move normally.
T2 means the tumour which may have started on the vocal cords (glottis), above the vocal cords (supraglottis) or below the vocal cords (subglottis) has grown into another part of the larynx.
T3 means the tumour is more bulky and has caused one of the vocal cords to not move (your doctor may describe it as fixed). OR the tumour has grown into nearby areas such as the tissue in front of the epiglottis (pre-epiglottis tissues) or the inner part of the thyroid cartilage.
T4 means the tumour has grown into body tissues outside the larynx. It may have spread to the thyroid gland, windpipe (trachea) or food pipe (oesophagus).
Node (N) describes whether your cancer has spread to the lymph nodes.
There are 4 main N stages for cancer of the larynx – N0 to N3. N2 is split into N2a, N2b and N2c.
The important points here are:
- whether any nodes contain cancer
- the size of the node containing cancer
- which side of the neck the node containing cancer is on
N0 means that the lymph nodes don’t contain cancer cells.
N1 means that one lymph node contains cancer cells on the same side of the neck as the cancer. And the node is less than 3cm across.
N2a means that one lymph node contains cancer cells on the same side of the neck as the cancer. And the node is between 3cm and 6cm across.
N2b means that more than one lymph node contain cancer cells on the same side of the neck as the cancer. But none of the nodes are more than 6cm across.
N2c means that there are cancer cells in lymph nodes on the other side of the neck from the cancer, or in nodes on both sides of the neck. But none of the nodes are more than 6cm across.
N3 means that at least one lymph node containing cancer cells is larger than 6cm across.
Metastasis (M) describes whether the cancer has spread to a different part of the body.
There are 2 stages of metastasis – M0 and M1.
M0 means there is no cancer spread.
M1 means the cancer has spread to other parts of the body, such as the lungs.
The stage of your cancer helps your doctor to decide which treatment you need. Treatment also depends on:
- your type of cancer (the type of cells the cancer started in)
- where the cancer is
- other health conditions that you have
You might have one or more of the following treatments:
- biological therapy
WEEK 1 – POST TREATMENT
So I did say I would post each week on my treatment journey, good and bad, and its now a full week since my last treatment last Friday.
So fact treatment has stopped has not really stopped any of the side effects, as I was told, and I am still bringing up quite a bit of mucas during night and still on the Ensure drinks for nutrition and same amount of medication.
Still as tired and sleep pattern still same although couple days stayed up all day and lasted until 10.00pm
Neck is little sensitive and red and i would say a little more noticable this week and I am often putting on aquaous cream direct from fridge to calm n cool. This definately helps.
Not all doom and gloom and just see it as part of process and you just have to get on with it and see it through as no option. You hear of side effects and occational blips but most time am quite happily on utube/gadgets/entertainig myself/retail therpy and thats still ok.
So quick summary of week 7 and 1st week post treatment is pretty much same symptoms and side effects and wil see what next week brings.
Take care you all and have a good weekend
WEEK 2 – POST TREATMENT
and a quick update on my little journey and this is the end of the second week following the completion of my radiotherapy.
So i guess I would say not much improvement in terms of fatigue and if anything , slightly more tired, but off and just go for power naps when I like.
Still of variety of meds and defo needed just now but apart from I would say last Sunday when really washed out, Ive been relatively settled this week.
I’m still on the dreaded bushtucker trial Ensure drinks and am on 4 a day..meant to be 6 but im sticking to 4 and trying a custard or something to replace as they are gross lol.
Maybe I can liquidise a fish supper?
Gonna stick with it this weekend then maybe try and experiment with soggy cornflakes/rice pudding n stuff and see how I get on.
its right that there is no way that you just ping wide awake as soon as radiotherapy stops and a longer process, but little baby steps and im hoping slowely slowely progress will catchie the monkey.
Staying positive a a little more retail therapy, which is vital, has went a little way again to bring some cheer.
Staying positive tho as always and just getting on with it.
I wish you all a good weekend
WEEK 3 – POST TREATMENT
So my latest weekly update post radiotherapy ( 3rd week) I would kinda make the following points and hope helps.
I feel in many ways im progressing, especially the mucas which has all but stopped but I am similar to yourself and have really constant dry mouth. Can sometimes bring up spit but my mouth is constantly dry with literally no saliva. Its a funny sensation and I even gor prescribed Glandosane which is a synthetic saliva, but its not really any good and in some ways drys mouth more.
I had my first appointment all the wellbeing clinic for post check up and they are delighted with my progress and think I am ahead of the curve but still a long way to go.
They were impressed I am managing 4 Ensures a day but I see them as medicine but I now have to start to try and eat little extra things on top. It was explained my body is still running a marathon and the more fuel it gets just now, the better the recovery process, so I got some little micropots of custard, rice and am going to try full fat milk n soggy cornflakes. Even managed 2/3 little mini curly wurlys lol
So basically been told, eat !…..even if you dont enjoy just now…eat….even small amounts to help get fuel in body as well as keep drinking plenty water. Was also told taste buds may never come back exact same but its a matter of adjusting and mouth may well be quite dry long term.
So thats good advice Im goinf to try and adhere to and at the end of the day, the adjustments we have to make are a small price to pay for getting this thing hopefully cured.
Still on quite a bit of morpine but feel throat, apart from dry, is getting better and easier to swallow and told will be looking to reduce this after new year.
Sleep is still often and quite a few power naps, usually a couple of hours at a time.
So all in all, I do feel progress within myself although I agree this constant really dry mouth with no saliva a symptom that has progressivly appeared worse this week.
But still positive and to leave on a positive note….Onwards and upwards !!!
WEEK 4 – POST TREATMENT
Hello all and I hope helps but rationale to start this thread was to try and log my little journey in the hope that it helped at least one person..
soooo this is now my 4th week post treatment and I hope I am not talking too soon or over egging but I feel bloody great this week and in the scheme of things its a good message week over progress.
I feel even one week has made a difference and am starting to notice improvements in how I feel with side effects and how I feel personally.
Dont get me wrong , Im still tired and nap when I like, but seem to be awake longer this week and have managed a few different experiments re food. Had mince/mash.petir pois n carrots all mashed in and managed to take in. Taste not brilliant brilliant but its fuel and wasnt as bad as thought and cound t done cpl weeks ago. Managed this week to eat half thin bagle with butter/bacon n soft egg and the most wonderful cup of warm milky tea. Frankfurters n tomato sauce, but as Hazel said you will often find you cant take everything…Tried a steak and gravy pie, took one bite and put it out as too gross.
Down to 3 ensure drinks a day then supplementing my supplements with my food experiments and mini curly wurlys and mini mars bars. Sod the teeth for now !
Not sure whats going on, but one thing I am going through a lot of is these mini curly wurlys…one thing that tastes great right from fringe and I must admit am indulging in them quite a bit but can only help pile the calories on.
Mucas has pretty much disappeared completely and although mouth still dry not as bad as it has been and Blitex on lips to keep moist has been great and helpful.
Still drinking at least 3/4 litres water a day and im convinced helps so much with everything..
Still on meds but have reduced oral morphine slightly as also on slow release morphine and this has been fine as well, touch wood.
I may have a blip and will deal with if and when comes, but after such a bloody gruelling time its great to have a week where I genuinely feel bloody fantastic !!!!!
I guess im coming across as little over excited as im still obviously not fully recovered but its good to have a good cheer mesasge and to those of you behind me in treatment, take heart that the side effects do calm down on your journey like mine. We are all different and will happen in different stages and although some side effects may increase again, am taking heart on how I feel just now.
Next goal is to get back to reading more as Im an avid reader and miss as ive found too tiring.
So onwards and upwards again and hopefully by next weeks update I will have been out ice skating, dancing and little bit of hill walking lol
WEEK 5 – POST TREATMENT
So end my 5th week post recovery and its been a funny one.
I was fab all week last week but this week ive had 2 or 3 days not so great.
Been little more washed out than normal and really sleeping a lot plus my left side mouth little funny with jaw little swollen and funny taste/feeling with with gums and they seem swollen/little more raw than have been. Not sure if oral thrush as dont know symtoms but have taken some meds I had for that left the past couple days so hopefully will settle down.
You are also right re taste buds being funny as I thought I was doing great..reducing Ensures and was eating mince tatties,,and even managed some light dusted haddock,chips and soft buttered toast one night.bliss!!
This week my taste funny again and no real appetite . Xmas day….dried some prawn cocktail but only 2 spoonfuls…had little small bit turkey/gravy and few mouthful steak pie n mash but not really very much at all and no dessert.Kids came round for xmas dinner but afraid I spent most of day and night in bed.
So i guess although still on road to recovery seems a little back this week in terms of taste buds/food intake as well as sleep and generally being more tired/washed out.
I dont really do anything apart from sleep or im my den wiyth gadgets n utube/PC/retail therapy so maybe being so lethargic is making me more lethargic if that ,makes sense but i dont really have much energy to do much else. When did you start exercise again as I may benefit from trying little aby steps n out for small walk ??.
Can i ask where you are in terms of sleep/exercise etc and generally how much of both do you do on average
Not in pain at all or any discomfort, just been little off and bit more tired than usual with taste buds/appetite playing up compared to last week.
Anyways, not complaining and still positive as feel im still recovering so should expect these things and its a time thing so acknowledge that patience is needed and not to assume thats it cracked after a week of feeling great lol.
I will indeed celebrate the end of this bloody year with some nice iced water although I occasionally have a cup of warm milky tea and enjoy that as well.
Again my thoughts and best wishes to you all wherever you are on your journeys and may 2019 be a blessed, happy and healthy one.
Onwards and upwards
WEEK 6 – POST TREATMENT
So as I like to do each Friday a little update now i am in 6th week post treatment.
Have have a much better week than last and feel been making good progress in many ways.
Food wise …still take 2 ensures a day sometimes 3, but have dinner each night and have had roast beef gravy and mash, managing small crusty rolls again which delighted with as I love them freashly basked.
I have even managed twice to have a peppanoni pizza…bit dry but was ok and large hot dog on soft brioche roll with chunky chips as side.so feel little experimenting with food working away again ok
I am constantly drinking cold iced water and must drink at least 4 litres a day and sometimes more.
Great beliver it helps so much and maybe co incidence but my mouth is not so dry this week and have feeling of some saliva again which is a godsend.
Have reduced my slow release tablets this week with no adverse effect and only max of 2 oral morph..one morning and one early evening. Maybe doing out of habit now as I feel I need less and less and going to reduce further from next wee. Gums left side mouth a little raw and tender so oramorh helps.
Fatigue is still there but again I think Im awake more and more..its just fragmented and I can be up from 10pm to 4am then bed then up again 9am ish…all varies.
All in all I feel really quite good this week and apart from fatigue and no real energy to do much, dont really feel I have too many symptoms to complain about>
Touch wood this continues and am hoping this gets better and better
WEEK 7 – POST TREATMENT
Had my first follow up appointment with my consultant after treatment and support team today and went well. Just for timing i am into my 7th week post treatment.
Consultant asked general questions how I felt and then quick look around mouth and throat with stick and headlight and seemed ok.
Had scope down nose and consultant seemed pleased with what he saw. Said a little more mucas at this stage than normal. I thought that was a bad thing but partner said he meant a good sign as throat not as dry as would have been expected at this stage. Funny how 2 people can interperet same info.
Anyhoo, all seems good. Ive lost wee bit weight since treatment end and and just wee frown from one of support team. As Im starting to be able to eat more and more I have been told to cut down on the bushtrucker trial Ensure drinks and eat more and just use them as a top up.. More proteins..porridge etc and even little more often is better. Admit I have been drinking 2 ensures during day but only having one small meal at night. Can eat more variety but still small portions ( plus a whole packet of mini curly wurlys for dessert)
So on the eating try to me more practical and think of more energy foods as fatigue is still the main symtom that I still have, albeit getting better. Had appointment 9:50am and slept in and didnt wake until 9:20am!..****…quick shower and drive down to hospital and into short stay car park and literally made appointment by 2 mins. This is when I appreciate staying in a village, then all carriageway to hosipial in around 10-15 mins max and I do realise how far and hassle travel/ parking can be for some so very lucky in this respect.
Told to start to get out for walks , told no health club and bike yet but start to try and take a daily walk.(I know you do 15 miles a day on bike Hazel lol) but i dont feel i have the energy yet but will try the walks. I only do gentle bike exercise at club anyways and i think he thought when I mentioned health club/gym visions of me on treadmill and power weights then swim ! – err i dont think so.
Consultant was ok (ish! ) when I said I planned to return to work 21st Jan and said that was fine as long as phased return and thinking over a couple of months at least. So again for timing and all going well this will be aroud 8 weeks post treatment then starting back to work.I dont have any manual or physical work and all day working on computer so helps a little, plus I have the luxury and luck of being able to mix working from the office and at home.
I will see how it all goes as ive not really taxed brain re work for some time but looking forward to getting back to being productive and creative again, but plan on being sensible with baby steps and pragmatic on how im feeling.
Get a pep scan 3 months after treatment so as in 7th week post treatment should be around end Feb ish I will get a scan.I did ask the question, so what happens if any residual cells still hanging about and was told they just wait another 3 months as usually resolves itself, but told me looking for a positive result and cure. Once all clear then follow up check ups with clinics for 5 years.
Was told by advanced nurse specialst that PEP scans can very often show false positives for many reasons so not to worry about any lights etc..I’ll prob get more info on all that when getting done.
I know some dont like to ask, but I do and glad I did as it all seemed very positive, no negatives at all and came out feeling good and mental boost. Even more positive attitude about tackling food and small exercise.
Just remebered that in all my updates throughout journey there was no mention of swallowing exercises. Not sure if anyone else had to, but before treatment I seen the speech therapist and was given a whole series of swallowing exercses to do twice daily. Like holding throat and swallowing ten times/ gentle bite of teeth on tongue and swallowing 10 times/ open mouth and wide as possible and stick out tongue. I have a proper booklet with it all that department was piloting and trying to get funding for. Rational was to help throat muscles and to try and continue to have them active and hence benefit when recovering and lessesing problems with swallowing during treatment. I have been good and pretty much complied with all advice given and honest reason i fog=rgor to mention was that I actually forgot all about them and did not follow religiously.
On the plus side and no one will convince me other wise is that I have drank so much water and still do drink at least minimum 4/5 litres a day and sometimes more and that has helped me sooooo much in many ways in terms of recovery/ dryness/mucas issues and by default continually drinking water means i am using my throat muscles.
Prob just a blip but left side mouth bit swollen past 2/3 days and gums quite tender. left side Maybe something I have eaten but tbh this has flared up now and then throughout. Will rinse a little more with Cahpasol and Difflam and hope that sorts.You think you are 100% fab then somethig always seems to pop up to remind you that you are still in recovery mode!
Still remain positive and cheerful and as always onwards and upwards
WEEK 8 – POST TREATMENT
So at the end of week 8 , post therapy.
Mixed week and still soooo tired and sleeping so much. cant seem to shake this fatique at all although not really napping during day but earlier to bed and sleeping 10-12 hrs.
Start of week was just no energy at alll and I guess mostly my fault.
Eating was getting better but appitite gone again and was not really taking in the fule I probably needed and why my fault and foolish. Its hard sometimes and wish it was just as easy as some people saying you have to eat, but you do am Im proof of what happens when you dont. Upped my bush tucker Ensures again the past couple days and has made me feel a little better.
Med wise, Im still on morphine but not so much and still regularlity taking caphasol and diffkam for claggy mouth.
Good example of thining you are doing great and the start of a great recovery when you get a knock on the door from your body saying err nah.we have a bit to go yet.
Not sure if a little early but next week plan to work 4 hrs a day mon/tues..4 hrs in the office wed then 2 days annual leave and will see how i get on. Mixed feelings as been off for so long and still right up there with fatigue but going to give it a go. May help fatiguw and mojo getting brain into gear , well what im hoping for.
So overall pretty much same apart from reality that I shoudnt be over confident on recovery process and one or 2 weeks feeling great ish does not mean that I have cracked recovery period and its still slowely slowely monkey.
Will continue doing as im doing and still drinking lires and lires water. Have consultant again on a couple weeks and I think PEP scan may be due end of Feb but will find out more as I go.
So plan is to get some more ensures in plus more food which in turn should help with energy and fatigue. Only my own fault and I do know better, but I was a little remiss re intake and paid the price.
Learn to take own advice is something that springs to mind !
WEEK 9 – POST TREATMENT
so end week 9 post treatment and darn it for this being so hard lol
had a pretty rough week apart from yesterday and have really stuggled with food so have upped the ensure drinks to 4 a day and felt a little better yesterday. Also managed little cottage pie ;last night, but wouldnt say I’m enjoying any food and just doing for sake of it.
Still really tired and few nights in bed 6.30pm/7.00pm and sleeping right throught to morning.
Not mucas, but mouth has been really claggy and sticky to point of feeling sick couple mornings to try and get rid of..Its pretting disgusting mind.
Gums on left siide feel little swollen and raw but wonder if down to medication.
Ive tried to reduce morphine dose this week, without any advice as non offered by Gp etc but dont want to stay on this longre than I have to. Anyways, Ive been changing doses this week so Im going to speak to support team and or GP to get advice as I may well need but just concerned bout the continued dosage.
I get so much morphine on repeat prescription and probably on balance should maybe be a little better periodic check but I suppose thats down to me to raise with GP.
Work – not too bad and phased return to work this week plus 2 days annual leave today and yesterday
Same next week..work 2 days home 4 hours each day, i day in office 4 hours and 2 days leave so still plenty rest. Not really sure if I’m going back too early, I’m beginning to think I am but will see.
Walking – still limited and walk to work from car park was quite measured and had rest in corridor with a drink. This is a 15-20 min walk!, but gonna try a little more next week – i honestly dont have the energy.
Part from that Im fine and dandy . Its just a stark reminder to me that the recovery from this is slow and you definately dont boucenback easily nor quickly. Fasle sense of secuirty a few weeks ago as felt great but pulled back again I feel but am opimistic and positive and next week is going to be great and much much better with more energy and more food intake.
Would say that the fatigue and food intake pretty much the dominant side effects still hanging around and although I know wont last forever, Id like my body to show me a little more consideration and buck its ideas up. My brain is willing and up for getting on with with it, my body is just relaxing and going chilllll..take it easy…so Im left with a brain trying to get up and go attitude and body still in holiday relaxo mode.
Managing to read more and more so thats a bonus as avid reader and parcels from Amazon and retailers help but the good thing is im never really bored and always quite happy with phaffing around on my gadgets.
Keeping up my own mantra and drnking so much water and I feel that helps sooooo much…
so roll on next week when I am hoping to be more bouncy, full of energy and full of food.
WEEK 10 – POST TREATMENT
End week 10 post treatment and would say a little better i guess.
Baby steps at work. Monday was ok and around 4 hrs.
Tues/Wed working from home and did around 5 hrs or so from early morning but slept in afternoons for around 2-3 hours so I’m thinking even mental work is adding to fatigue. Thurs/ Fri annual leave.
Got consultant and support team appt next Tues and will see what they say around the fatigue etc. as its getting slightly better but boy its still there. Part I think as well is still not having appetite and have upped the Ensures to 4 a day now plus small meal at night and mandatory curly wurlys.
I have no doubt I will get a kicking at consultant appt as Im sure Ive lost quite bit weight since last appt so will need to see what they say. Hoping at least the ensures and meal still enough for minimum intake.
Mouth still claggy and glue in morning..wouldnt say mucas but more like sticky and unpleasant. Still drinking plenty water to help and also still use my regular caphasol tablets and Difflam mouthwash.
Meds – I have cut morphine by half now and am on 30mg tablet in morning and 10mg at night with 1 oral morph a day and occasionaly 2.
Soluable paracetamol have cut by 4 times a day to 2.
Done on own without any advice so again will see what consultant says as feel Im ok with what im doing and no side effects or pain. Dont want to completely stop until told but would rather start thinking about moving to codine now and get off morphine totally.
All in all feel im overall good although I dont think im ready for 5 full days a week yet by any shake of imagination. I’m ok home working in peace then sleep so am going to have to assess work situ.
Still got leave to take and taking baby steps but I can only do what my body can do and if I cant do full time , I may have to go off again for little longer recovery period. Maybe im going back too early and expecting too much as I think my brain is overtaking my body.
Pretty much status quo with fatigue the biggest factor as although no real appitite feel the ensures and small meal plus drinks is at least the minimum fuel intake i should be having,
WEEK 11 – POST TREATMENT
End of week 11 and wish could say i’m dancing and running up stairs but i’m afraid fatigue still looms.
Probably slightly better but not much and still sleeping a lot, even during day.
Been bit more active and one day in office/ appt with consultant/ GP’s and shopping and working around 4/5 hrs a day which although mental can be a little tiring.
Food wise im still on the Ensures and using up to 6 a day still as food hit and miss still.
Occasional very small meal but have started to enjoy hot buttered toast, raspberry jam and cup of tea.
its the little things that make you happy huh lol.Also Volvic “touch of fruit water” from Tesco really nice, lots flavours eg Watermelon,Lemon Lime, Summer Fruits etc and nice change from plain water.
Had consultant appointment who seemed pleased with progress and has now ordered a PET scan and should be in around 2/3 weeks time. Was also told not to be alarmed as very often false positives show up and 40% of his patients end up going for further tests if shows up elsewhere in body etc..I’m hoping to be in the 60% bracket.
Fatigue , he told me was quite normal and said he told me at the start that this is serious treatment and can take up to 6 months/ a year to get fully back to normal.
Scope down and he was happy enough with that and said everything was looking good, but lets see what the PET scan results are.
Medication wise told him and my GP that I had halved Morphine etc and was looking to cut further thinking they would both be pleased. Both had a simliar reaction in that I shouldnt be too quick to totally cut off and halfing a bit too much just now and to do more gradual approach.
That apart still in good spirits, reading more, which i enjoy so much and combined with work and gadgets feeling ok. Bit of pressure from work to up the game as they dont understand but GP is equally adamant and happy that if I’m stuggling at all, then he will sign me off for a further total recovery period.
Guess overall just re iterated again by consultant and GP that slowely slowely is the recovery for me and there is absolutaly nothing more that I can do about it and continue to do what i’m doing and sit it out.
Have started a proper blog and am looking to pull together my journey in a little more stuctured manner and have internet addy etc but will take time and do properly but that has kicked in a little incentive for me albeit im in no rush at all to finish.
Hope you are all doing fine whatever stage you are at.
Week 12 – Post Treatment
So end of week 12 post treatment.
No real change and think have hit a plateu – still fatigue and sleeping a lot and still not any great appetite. Think taste buds still little shot as I have in my mind what I would like but cant eat them.
My gums left side mouth are swollen and mouth little drier than normal so wondering if contributing.
Will mention to doc next time or wait till after results before I do anything.
Got my PET/CT scan next Wednesday morning so am obviously hoping for good news. No idea when I will be told as although I know results available following Monday latest they all have to go through the treatment team and consultant to have them decide what the scan results are showing.
My specialist nurse is going to try and tweak my next consultant appoitment as its not scheduled until the 19th March and I would prefer not to wait that long.
The only other joy this week was a visit to NHS24 out of hours Tuesday night 10.30pm as for my sins I am now fortunate to now have cellulitis on my right elbow which flared up really quickly. I have horse size tablets and strong dose (Flucloxacillin) to take for a week four times a day. Oh the joys!
I must have been a really bad boy in previous life.
So now i’m hoping for some luck to kick in and give me some more energy next week.
Nontheless still staying positive and cheerful and onwards and upwards for next week.
PET/CT SCAN –
Done after week 12
PET/CT SCAN done today 20th February 2019
So first of all taken through to locker room where valuables/phone etc left as well as my water. Nothing contaminated allowed in and water given in pre room if required.
Just as an aside, was told cancellations can be high just now as only one company in Preston makes the stuff injected and made at 2.00am in morning then driven up through the night to supply all hospitals. So dependent on any machine/equipment or traffic issues can actually determine whether scan goes ahead.
Anyhoo mine was ok for today and weight/height and blood sugar taken.Too much sugar in system and scan will not go ahead.
Injection into vein then saline then I guess then the radioactive liquid.
Was allowed my ipad in so rested and read on comfy electric recliner for around 45 mins or so as that allows for liquid to be effective.
I had jogging bottoms/t shirt and sneakers on and I didn’t have to change into gown or anything as made sure I was in my comfy attire.
Taken through to scan room and told to lie on bed. Option whether to have music on.
Put through a machine with a big polo mint 2 or 3 times for CT then just lay there while PET scan took place,
Whole scan took about 25/30 mins then up collected belongings then home.
All painless and pretty straightforward and now just the waiting for results, which I will share once I know.
Week 13 – Post Treatment
So week 13 post treatment and still chugging along.
I do feel there has been an improvment this week and although baby steps it’s in the right direction this week.
I’m still sleeping a lot but am awake for longer and longer although I have turned night into day a couple of times.
Eating wise, am still on Ensures but not as much and have been trying to experiment a little more. One of the tricks I think is to try smaller portions as I get put off by a big plateful knowing I cant eat it all.
Had stovies/fishcakes/cottage pie as examples and also back on my mini curly wurlys and fruit salad squashy gummys. Have also tried Hazels suggestion of mini jaffa cakes and enjoyed.Hot toasted cinnamon and raisen loaf and butter/cup of tea now goes down nicely.
It’s funny and not sure if others same but I dont seem to have much consistency as I can enjoy say cottage pie one night but few nights later cant touch it. The other thing i am finding is that my mind is actually in the mood of certain foods, I really want to eat them but for some reason I cant. I dont know if its a mental block or otherwise but I dont fully undertand why I cant eat what I know I like and want to eat but can’t sometimes physically do..Not sure if making sense but I know what I mean.
Had my PET/CT scan today which ive posted separate detail about and also being doing some work from home and enjoying.Reading a bit more so all in all when I add all these things up I guess that although im still tired and sleep a lot, I do feel some progress has been made this week and am hoping to build on that. I’m taking this week as positve step in right direction.
I have also been thinking that for anyone reading my blog and I am week 13 post treatment it is perhaps pertinent to say that we are all different and react and recovery will be different for us all. There is no automatic magic number of days or weeks that applies to us all. SuperDave has had a remarkable recovery period and Hazel has done really really well and back on bike quite early on but still has occasitional side effects .I’m probably lagging a bit recovery wise in terms of fatigue and appetite so we all varied.
I went into this treatment just after a bout in hospital after 4 weeks chronic diahorreah and hospitalised for a week and on steroids 3 months (reaction to wrongly prescribed medication).Not entirely fit so I’m sure that may have something to do with my longer recovery period wheres if you are reasonbly fit beforehand there would be a good chance that would stand you in good stead post recovery.
I guess just to point out as I dont want anyone using me as a particular barameter thinking wow 13 weeks and still not as far on as expected.
We are what we are and although I think my mind is overtaking my body, you just have to accept that it is what it is and it will al come back in good time and in your own time and not anyone elses.
So still positive and hoping to get good results from scan – also aware tha scan is so detailed it can also pick up other things not related to cancer, but pretty much a thorough MOT given.
Meds slightly reduced again this week, left gums still swollen sometimes and I’m still drinking then drinking then drinking some more.
Onwards and Upwards
Week 14 – Post Treatment
Update for week 14
Its not been too bad actually and I feel very small baby steps are taking place. I’m still on my Ensures but only manage a small portion of a meal at night, but taking a little more or shall i say, forcing a little more and as much as i can. To be honest I cant say i really enjoy anything and eat as a function still.
Fatique still there but feel awake for more hours a few days then maybe one/two days this week zonked and in bed a little more. Am working doing what i can without overdoing so can be a little more tired in afternoon and depending on when start. Can sometimes turn night into day but at least working from home so able to cope.
Had to stop antibiotics for celulitis on elbow as reacted to them with diahorreah and sickness. GP yesterday and not too concerned and said should go away on its own.
Had my PET/CT scan last wednesday and Ive been told results are there but no one will tell me anything. Was told maybe GP – nope , was told try consultant PA who passed me on to specialist nurse – nope. You have to wait intil next Tuesday until you see the consultant as no results good or bad, would be given out over phone. I understand that but my little niggle is why not say up front, even on scan letter, that results would only be available at your next consutant appontment and not over phone or via GP. Maybe just have the process more clear and that way you know exactly where you stand. Rant over lol !
I guess just a little frustrating knowing the results have been avaliable from Monday but I have to wait until next Tues 5th March for.
At least I managed to bring forward as was originally on the 19th March and I have another appt with the Gastro consultant as a follow up on the 19th ( I was misdiagnosed last year before cancer found and in hospital for week. Had biopsy for bowel cancer but was all clear but have to have this followed up.
Can you imagine seeing a consultant in the morning getting results for throat cancer and another consultant in the afternoon for bowel cancer lol !!!
So anyways, D day next Tuesday morning for scan results and I will share once I know and good or bad.
All in all quite a good week and resigned myself to fatigue picking up when it picks up and my body will decide. Keeping figures crossed for Tuesday but remain both positive and also realistic that further issues are still an option.
Hope all ok and good
Onwards and Upwards
The All Clear
PET/CT scan results 05 March 2109 shows I am cancer free and cured
Just back from consultants and great news… ALL CLEAR !
Called in and told good news, consultant is happy with scan and not showing anything of any concern to him and I have had a good response to treatment. Also told that after such a positive response to treatment and scan showing way it is after treatment then statistically there is a 97% chance that it will remain like that.
It’s a weird thing to take in as well as after all this time I suppose I can now say I’m cured and cancer free. I’m just so used to “having throat cancer”. I’ve been so positive throughout and still kept my humor but was little bit emotional coming out room.Think just sheer relief as no more further treatment required.
I also think its great for others to hear yet another positive outcome and hope provides further inspitration and belief that the light at the end of the tunnel does actually exist.
Onwards and Upwards….from a cancer free Ian
Meet monthly with the ENT oncology consultant and support team. They are absolutely fantastic and I feel very re assured in their hands. The support team and after care follow up after treatment is really good and so professional. They keep on top of your progress and are there to help every step of the way. Opportunity to have regular meetings at a Wellbeing clinic where progress is discussed and monitored.
You will have you weight monitored throughout treatment as well as after and they are keen you maintain your weight and if possible gain a little.
During and after treatment is NOT the time to think its fine to lose weight. I still struggle with appetite and weight and am still on Ensure supplement drinks and trying to maintain 4 a day. At the peak I was drinking 6. In simple terms they are a small meal and around 400 calories and its so important to get calories into your body for energy.
Make no mistake this is serious treatment to paraphrase my consultant and the radiotherpy will kill healthy cells as well as cancerous ones and you need all the fuel you can get. This is the time when you are advised to eat everything you would not maybe normal take like plenty butter/rice made with cream/ anything with high calories is good.
Weight can wait another day as you need your fuel to help your body recover.
I have a fabulous support team and the aftercare has been super and am really glad I have them behind me. They are all great and my specialist nurse on my support team has just won a national award in the NHS for cancer aftercare and follow up so as you can imagine she is a wonderful asset to have on my side.
Like this blog, I would like to give something back and would be quite happy to stand up and do a talk or question and answer session at the hospital and/or at clinics. Even to make myself available to others if the team thought it would be helpful. I will speak to my support team, advise them of my blog and offer whatever help I can give others depending how they view this.
A PET/CT scan is carried out approximately 3 months after treatment stops. Reason time delay is to allow area treated settle. Also advised that a lot of false positives can crop up at the scan and not to be alarmed. Possible you will be sent for further tests depending on scan and/or wait a further 3 months where the area will have settled further.
Consultant advised 40% of his patients need further testing because of the scans but does not necessarily mean anything sinister. My scan is due shortly (20th Feb) and will update outcome.
You will see that this journey can be a challenge and it is, but it’s a necessary one and I will take this with the high chance of cure. I don’t put getting this down to anything in particular and it unfortunately chaps at many of our doors no matter our lifestyle. I agree there maybe some things you can do that might mitigate but I really believe in what shall be shall be.
I hope this blog of mine helps at least one person and that you are given some indication of how the journey pans out. Remember we are all different. Not all get the same side effects, some recover faster than others and others sail through it with minimum recovery time.
I would say in the main the treatment itself is painless and pretty straightforward. It’s the recovery period that hits you and I am the first to admit I totally underestimated how long the recovery would be.
I am writing this at the end of week 11 post treatment and still have fatigue, although getting better, still there and still have lack of appetite and still on supplement drinks.
Please look at the tips and little things can help the most sometimes and follow your advice from your specialist nurse each week/ your support team/consultant and others who have been throughout the journey.
I have my thread on Cancer Research UK and it’s a wonderful site with so many nice helpful people there to help support you/offer advice and tips/ answer any questions or just be there for a rant.
Remember throughout the journey that the light at the end of tunnel is there. It may take a little while, but its there. Hold onto that, stay as positive as you can and you will come through all this to lead your life to the full as normal.
Remember you are more than welcome to contact and email me and I will help in anyway I can.
I will put in the section with tips but want to leave you with my pre and post treatment mantra.
DRINK, THEN DRINK AGAIN, THEN DRINK SOME MORE !
It’s the best medcine of all and not only keeps you hydrated but it is constantly using your throat muscles. However hard you find it please find a way as it will help you throughout and afterwards.
Since a few weeks into treatment I upped my water intake to around 3 to 4 litres a day and sometimes more.
DRINK, THEN DRINK AGAIN, THEN DRINK SOME MORE !
Probably helpful to have a section around medication as this will obviously be a major feature during and after treatment.
The first 2 weeks of treatment in my experience was pretty much a non event with no side effects, eating normal and no pain.
Then middle week 3 the side effects started and therefore the medication changed.
First of all please try not to get too reticent to take painkillers – they are there for a reason and was told to take them for that reason. There is no need to be in pain or discomfort any more than necessary.
My biggest pain without a doubt was the recovery period from tonsil removal ( ask any adult who has has tonsils out and even if you factor in men are babies with pain you will hear lots of dramatic tales over the tonsil recovery challenges! ) otherwise my fantastic support team have monitored and kept on top of my requirements throughout as had my GP afterwards.
The main one will be morphine, starting off with oral morphine that gives temporary relief to Morphine MST tablets, with varying strength advised by team, which are taken first thing in morning and later at night, The idea being you will have pain relief in your system 24 hours a day.
One wee tip is to use medical plastic sterile syringes.
I’ve posted a link and you get pack of 10 for £2.70 and instead of making a mess with a spoon re oralmorph as an example, you just use sringe, sook up 5ml then empty in mouth,Exact measure and so simple and clean to use and each one reuasable for a while. It’s one of these things where sometimes the simplest little tips of help are the best
5ml Becton Dickinson BD Plastipak Medical Sterile Syringes Luer Slip without Needle for Medical and General Purpose Use / Packs of 10
or just type in Medical Sterile Syringes in Amazon..
I was also prescribed soluble paracetamol which I was advised to take 4 times a day.
Mouthwashes I was given Caphasol tablets to rinse and also Difflam mouthwash which is a little more refreshing taste. Important to maintain oral hygiene. You may also , if required some medical for oral thrush as its one of the side effects.
Additional medication might be anti sickness liquid for a short while.
Your neck maybe become raw/itchy/little burned and I had to use Hydromol cream which I used often and kept in fridge and applied cold. My neck was not effected that much and cream used for just over a week.
Again no shaving with an open razor and electric only and wash neck with non alcohol based cream. Your support team can supply and advise
Perhaps some Laxido sachets as morphine makes you constipated and these are the most effective.
I was also given Daktarin Oral gel for my mouth and I also used Bonjela and Blistex to keep lips moist.
I tried myself to reduce morphine dosage but was soon advised by consultant and GP not to. It’s there to help and should be reduced very gradually as the the requirement becomes less so have now heeded that advice.
Ensure supplement drinks I consider as medicine as they are proving my body with fuel that I would otherwise struggle with. I was fortunate not to have a PEG/feeding tube inserted so cannot really comment on this area but there is plenty information and guidance/tips should you need.
So my drinks I started at 2 per day, was losing weight and was told by my shocked specialist nurse I should be drinking 6 a day!
Wow, that was hard but i did it, but reduced to 4 supplemented by small meal at night,
You are advised to eat small meals but often rather than have large meals at set normal times which in all probability you will not mange, but again we are all different and some need a feeding tube, some do with supplement drinks and others get back to eating pretty quickly.
Just a preference but I can only take the banana or strawberry drinks – the others like vanilla or chocolate I find gross but others may be different.
I may repeat or but also cover more medication in the final section around Tips and advice for side effects. They are in no particular order.
Tips & Advice for Side Effects
Stay off Google
Seems an obvious one but the temptation is there to google. The problem with this is that there is so much mis information and can really set your mind racing. Stick to NHS based websites and Cancer Research UK is the one I have found the most useful not only for information but also for help and support
Big time – not that you will have much choice. Fatigue is probably the number one side effect that is guaranteed to hit all, albeit each will be different. I have found it hard to fight and I just basically go to bed when I need to. Sometime I need to nap for an hour to take edge off and sometimes I can nap for 3 hours then still sleep at night, so you will be sleeping a lot and resting. Your body has been through serious treatment and needs time to recover. I was actually told by my consultant that in some cases it can take a year to 18 months to a year before you body has fully recovered and back to previous normal.
However in most cases getting back to some normality will be a lot quicker and will vary from patient to patient
Little tip I got from a lovely women called Hazel who also has a blog and a big contributor on my thread titled “Radiotherapy for Throat Cancer” on Cancer Research UK. It’s under Living with Cancer section and also the basis for most of my updates here.
These are really soft toothbrushes you can get from Amazon and are really gentle with your daily teeth brushing – or at least the teeth you will have left if like me , you have had all back teeth removed.
One member from cancer research website liked junior strawberry fluoride toothpaste to perk up taste buds.
Nebuliser and Saline
Got to borrow one of these from the hospital and was particularly useful when my mucas was at its worst. Breathing saline solution through a mask helps clear it a little and trust me, every little helps
Ah my mantra again
Drink, then drink again and then drink some more. I drink around at least 3 to 4 litres of water a day and this helps no end. Keeps you hydrated and uses your throat muscles constantly. I occasionally drink a can of diet coke as feel the bubbles can help clear some of the gunk from my mouth.
Cannot emphasise enough how important it is to drink as much as possible. Aware that some find it difficult to drink this much but do try and drink as much as you can, during and after treatment. You will reap a lot of benefits.
The best and most important medicine of all.
Appetite, Eating and Taste Buds
Appetite is an issue and I still struggle with eating
Advice I was given was to eat small portions and to eat often rather than try large meals at once.
Remember to drink water to help food go down.
Soft foods can help and some suggestions that I have tried with varying success but again each will be different over taste and likes/dislikes.
I often just buy the Tesco Finest ready meals and zap in microwave. Having said that a lot of my shopping goes in bin as I leave until past sell by date as cant face and just revert to my Ensures.
Try and eat small and often and trial and error but if all else fails at least drink your supplement drinks to get fuel in your body.
Your taste buds, if like me, will change and can go completely or mainly just have food and drink taste different to what you are used to. Food can taste metallic and not appealing and its no wonder why some lose appetite and struggle to eat.
That said your taste buds will start to come back slowly after treatment although some are quicker than others. In some cases it can take some time to taste food again to the same as pre treatment.
I have experimented with varying degrees of success with things like Cottage pie/smoked haddock fishcakes/hot toast with butter and jam/smoothies/ice cream/pizza soft/lasagne/stovies/braised sausage with gravy/sauces with food also helps go down easier. I could go on but you will experiment with your own preferences
Still, whatever way, you have to get fuel and drink into your body in the best way you can.
Don’t Drastically Reduce Medication & Painkillers
Tried to reduce morphine myself, which I did ok ish but probably too drastic too soon so on advice of GP increased again slightly.
As my consultant and GP advised that painkillers are exactly that and are there for a good reason. While you may be tempted like I to reduce medication dosage yourself, please listen to advice or ask Consultant/GP who will tell you to reduce very gradually over a longer period of time.
No need to suffer any discomfort and would advise you to take your prescribed medication if you continue to need it and without setting your own timelines for reduction. Take advice and also listen to your body
Administering Oralmorph etc
One wee tip is to use plastic medical sterile syringes (no needle – just plastic).
I’ve posted a link and you get pack of 10 for £2.70 and instead of making a mess with a spoon re oralmorph as an example, but can be used for other, you just use syringe, sook up 5ml then empty in mouth,Exact measure and so simple and clean to use and each one reusable for a while.
5ml Becton Dickinson BD Plastipak Medical Sterile Syringes Luer Slip without Needle for Medical and General Purpose Use / Packs of 10
or just type in Medical Sterile Syringes in Amazon..
Bottle of Water by bedside
I always have a bottle of water by my bed. Especially when mucas was at worst, I found having a drink helps. I still have a bottle to this day and very often just have a quick sip to reduce dry mouth. Very often the amount of water intake will also have you wake during night for toilet which again should prompt you to have a small drink to negate your dry mouth or mucas.
Dry Mouth/Sticky Mouth/Chapped Lips/Saliva/Oral Thrush/Ulcers
Like fatigue you will have a dry mouth – guaranteed.
Taste buds will go and dry mouth appears which can be a little off putting. Again drinking water is the best solution. Ices chips are good to suck on if you can tolerate.
Sticky and claggy mouth I have found different to mucus and hits me first thing in the morning. Can spend first 5 mins or so bringing up gunk and the stickiness from my Ensures I guess.
Saliva was just about nil at one point and tongue sticking to roof of mouth but has slowly started to come back again not 100%, but better. I tried a prescribed saliva substitute spray but I personally didn’t like or find effective
Chapped lips I just use Blistex to keep moist.
I would say along with fatigue and appetite the mouth issues are an important one to focus on and oral hygiene is important and brush teeth/ rinse mouth with Caphasol tablets and Difflam regular each day and night.
Sorry to be gross but keep tissues handy as you may well need to collect gunk from mouth you need to get out in a hurry.
You may come across oral thrush and I had for a very short time. Was prescribed Fluconazole which cleared it up in no time
Some use and gargle with bicarbonate and soda.
One used Trident spearmint chewing gum (it includes Xylitol, which is used to help dry mouths)
Another tip was to put soda water on tongue and suck as helps clear taste buds.
Loose clothing at Radiotherapy
Just a personal one and I did have the benefit of hospital being so close but as I spend a lot of time in shorts, I just wore them, a shirt and sandals/trainers to radiotherapy sessions. That way no need to spend time to change into a gown then get ready again. I literally kicked off shoes, off with shirt then on table, mask on and zapped. Easy and over in 10 mins.
Shirt/shoes on again and out. One morning I actually had my appointment at 9.00am and was back sitting in my car at 9.18am – perfect and job done for another day.
So after treatment I have been quite careful when venturing out as I have always feared of getting the cold or worse the flu while all this was going on. So given Scotland is not renowned for its warm climate I always get well wrapped up and have on a warm jacket/ beanie hat/gloves and I also wear a neck warmer/gaiter. I like them better than a scarf. Pair of warm sturdy shoes and i’m sorted and warm as toast.
Heating in house is pretty much on most of the time and I keep constantly warm.
Radiotherapy Sessions in Morning
Depending on circumstances I would advise to try and get your appointments first thing in the morning. I had majority of mine at 9.00am and it was a godsend. First of all the car park was quiet, I had treatment and back home around 9.30am. Then organised for medication and rest of day to rest. Understand this may not be practical for all, but certainly one that helped me
Spreadsheet for Medication/Organisation
If you are able to navigate around a spreadsheet then I would suggest setting one up to help log and record what and when medication taken. You will be on many different medications and some at different times. You will be tired and not always able to count on partner every single time so I basically set up a spreadsheet that listed each medication and times of day, then I had a marker than showed an automatic tick when I took any meds. Trust me it was really helpful to log as I sometimes could not remember when or what I had to take next and this was great to refer back to.
This can also be extended to listing radiotherapy dates/times/hospital appointments/contacts and phone numbers etc or even if you wanted to co ordinate everything in one place and also log sleep/food intake etc. Just a thought and do what works for you.This helped me a lot.
Just a small tip but flavored water a nice change from plain water and easily obtained from supermarkets. Try and avoid acidic drinks like fresh orange juice etc. I occasionally will have sparking water as well.
First of all for men – no shaving with blade and electric shaver only as well as use cream for washing face/neck – Hydromol was cream I used. No aftershave or alcohol based products on neck area.
Neck burn from treatment varies from patient to patient and I was lucky in that I had about a week of red , little peeling skin and feeling itchy. Again I used to keep a jar of Hydromol in the fridge and apply cold and often. That did the trick and helped no end. Calmed things down and didn’t last long at all.
Still suffer from left gums being swollen in morning sometimes but this might be just a personal thing. I was given Daktarin oral gel which helps as does my medication when taken. I obviously need a little more time re this but quick shot of oral morphine first thing in morning set me up ok for the rest of the day which will hopefully not be required shortly
Swallowing & exercises
Again probably not given enough prominence but my Speech and Language therapist has been great, not only with pre treatment appointment/tests and advice but also with the follow up monitoring.
I have another follow up appointment this month to test my swallowing etc
I was also given an excellent exercise booklet and its important to keep up with your advice and swallowing exercises. They are there for a reason and will help you during and after treatment.
Please try and keep up with your swallowing exercises. Is it always easy when so much going on – no. Will it help you on your treatment plan and recovery – yes
Be a brat and treat yourself and often. After all you have come through and the continuing side effects there is no question you need a dose of retail shopping. Helps if you need cheered up but even if you don’t need cheered up, treat yourself anyway. If your partner asks if you need anything suggest present/s would be really helpful !
Other treats for me was and is mini curly wurlys. There will be some things you enjoy more than others and this is mine. Soft squishy sweets I can tolerate too.
My best friends during and after treatment has been Amazon/ebay/ online shopping and the couriers.
I’m an avid reader and have read all my life and have read every night for years.
I only read in bed so this became a little impossible as I was too tired. I would say from my experience that I have been able to read again from around week 7/8. Slowly more and more but even a short time brings me pleasure.
Again, picked up from tip on cancer research but if you type the following into google there is an excellent article around after treatment. I would really recommend a read
After the Treatment Finishes – Then What? Dr Peter Harvey
A wonderful woman called Hazel from Cancer Research also has a detailed blog and another strongly recommended read.
Link to her blog is below
Not something I would recommend at all but not preaching. I used to drink vodka and coke and sometimes too much of it. From last June since all hospital and tests etc and definitely once diagnosed, I decided no way was I going to drink again. Not had a drink since early last June and have no intention of going back to in any shape of form. Maybe not for all, but my own view is that after all this, I don’t really want to be putting strong spirits down my throat. I’m not really a beer drinker and I’m better off and happier just not drinking at all.
Each to own and choice, but just wanted to put in my blog as my choice.
Avoid any acidic drinks like orange juice for example
I have not really experienced much hair loss at all although I had no chemo.
My neckline hair has not grown back and I have a higher neckline at the back and neck overall smoother than before. I still use electric shaver and avoid aftershave on my neck area.
Good to blitz some strawberry milk/strawberries and ice cream – or your preference. Its nice cold liquid, full of calories and recommend if you can tolerate.
I was advised to try even gentle walks, but I’m afraid I’m not at that stage yet and short visits/appointments/going to office/shopping gives me limited exercise but also tires me out. I am hoping to kick in some more gentle exercise soon.
I’m afraid that helping around the house with basic chores can be a challenge and unfortunately pretty much left to your partner.
Mine has been great and understanding but I think they must wonder at times if you play the “i’m tired” card to get out of helping. I can honestly say I never have done intentionally and have genuinely been so tired that even cooking a meal is sometimes a thought.
Although you can say the words it hard to explain to someone how you really feel and how total fatigue can kick in quite quickly and just ” I need to go to bed” becomes routine. Just my own experience but think its really hard for others to totally understand – colleagues at work is another example.
Darn it – we had to cancel one trip to Spain and two pre booked trips to Tenerife which we love and may take a while before we embark on that again. Another thing to remember is you will need to declare for insurance purposes and as you can imagine will effect premiums and may prove prohibitive. I think there are specialist policies available but its far too early for me to be thinking of that.
In the big scheme of things am not overly concerned although admit to being a little disappointed but hey ho, more important things to sort first.
Hoping for a few shorts city breaks this year
Again, just a personal thing but I have found a humidifier with essential oils and Eucolyptus especially really refreshing both in bedroom and in my den during day.
I started phased return to work around week 9. Maybe coming back a little too early as I’m really tired still and doubt whether I could work a whole full day 5 days a week. I work with computers mainly and no physical work really involved as I would not be able to do otherwise.
However I was able to pretty much work ok during treatment and for longer periods but the recovery period is the one that has been most debilitating for me and still is and little more restrictive of what I am capable of work wise. I feel my mind is overtaking my body but the body wins hands down and again I am forced to rest when I have to – no debate and no choice.
My specialists view is that it unusual to be back to work at this stage and while we are all different a general rule of thumb would be around the 6 month mark along with a phased return.
Maybe occasionally feel nauseous, which I did and was prescribed Metoclopramide Hydrochoride.
Quite a name but very effective and settled stomach
I have listed quite few tips here and although not exhaustive pretty much covers quite a bit in the hope that I help. Remember we are all different and what works for one may not work for another and vice versa. I have tried to share my experience so should qualify that any tips are only that and guidance and help shared is based on my journey so far and experience.
I am in no way medically qualified to advise or otherwise but I do hope that at least by sharing this can raise awareness of potential side effects and what may or may not help.
Any professional advice should always be sought from your Medical experts/ Support Team and GP
The last tip but should also be the first. Easy to say and not always easy to carry out I know.
However I have tried to remain positive throughout and keep cheerful and focus on the light at the end of the tunnel
Good luck to you wherever you are on your journey and I really hope you have found my blog helpful and would encourage you to show your partner/friends or anyone who you feel would benefit from reading. Please also forgive me for my spelling and grammar errors but you should get the gist of what I am trying to get across
Again, please feel free to contact me if I can help in any way.
I will continue to keep this blog updated so please come back for updates.
Oh did I forget to mention to drink, then drink again then drink some more !
Onwards and Upwards
The All Clear – 5 March 2019
Just back from consultants and great news… ALL CLEAR !
Called in and told good news, consultant is happy with scan and not showing anything of any concern to him and I have had a good response to treatment. Also told that after such a positive response to treatment and scan showing way it is after treatment then statistically there is a 97% chance that it will remain like that.
It’s a weird thing to take in as well as after all this time I suppose I can now say I’m cured and cancer free. I’m just so used to “having throat cancer”. I’ve been so positive throughout and still kept my humor but was little bit emotional coming out room.Think just sheer relief as no more further treatment required.
I also think its great for others to hear yet another positive outcome and hope provides further inspiration and belief that the light at the end of the tunnel does actually exist.
Onwards and Upwards….from a cancer free Ian
I wanted to have a last update, I guess for closure after news.
Rationale for last word is how I feel after receiving news and some of the reaction.
It’s like being on a roller coaster with so many twists and turns, ups and downs, always having an appointment , something always to do and continuous monitoring by support team and GP etc. Then it’s like you then hit the buffers at the end the end of the ride and then told , that’s it get off.
A lot of reaction has obviously been great, but there are many who are also saying today great, back to work/holiday/off meds and I should be absolutely fine now.
Truth is body still recovering and I will be back at work, back holiday, weekend breaks and health club with bike and swim once I am good and ready. Simple as.
So just a little flavor as while its great news and I really hope to hear more great news about others in similar circumstances, there may well be others, who like me will still have an ongoing recovery period, even after scan news.
So over and out and onwards and upwards
Back with Support Team and recovery plan in place
So while I have been given good news, this has not meant an automatic overnight recovery and everything back to normal and far from it.
Four and half months down the line I am still struggling with appetite and fatigue and have had to reach out to support team for further help.
I have lost lost weight and just been drinking supplement drinks Ensures and even then not enough of them. No appetite and just sleeping so much so need to break this pattern.
So meeting with support team Thursday 28th March and included Specialist nurse, dietitian and speech and language specialist.
Was basically told my body was in starvation mode and not getting enough fuel and energy and contributing to fatigue.
I now have an action plan to implement and have to report back in two weeks.
Ive been told to stay off work again as I went back too early and working too many hours even though only 4/5 a day and fully concentrate on getting better and have a more normal functioning life. Also have to see speech and language specialist separatly for re testing of swallowing function
I have to eat little and often and get fuel in, I need to record each mealtime and by that its breakfast/mid morning/lunch/mid afternoon/dinner/ bedtime.
Only 3 days in as I speak and I can say its made such a difference and I now feel I have some discipline and structure back and something to aim for.
I cant have blank sheets to hand over so its kind of forcing my hand, in a good way as there is no point in lying what I’ eating as only kidding myself and the aim is to recovery and can only do that by listening to the experts in their field.
Is it easy, no not always but its not been as difficult as I thought and I am now conscious that I have to eat something and record it on my sheet. Even if its a banana, yogurt or a small portion of a meal like cottage pie/scrambled eggs/rice pudding
Also been given a plan to reduce and control medication which is another bonus as still on morphine so am now reducing in a controlled manner with proper advice and monitoring.
Mentally I feel its given me a boost as I want to get better and know I listen to the experts and adhere to advice given.
I have eaten and logged far more in the past 3 days than I have in the past 2 weeks so that’s a good thing and its really motivating to have this focus as well as appreciate that I am now back in the system with this additional support and monitoring as they try and help me.
All in all its just something to accept as we are all different and recovery has no exact number of days or months and some side effects will linger on for years such as not being able to eat certain foods.
I will update further as action plan kicks in more and how I progress.
Meanwhile as usual – Onwards and Upwards
Progress of Action Plan from support team – 16th April 2019
Been on a structured and disciplined action plan after meeting with my support team approx two weeks ago and have to say it has definitely made such a valuable difference. I have been struggling on my own for a little while and thinking and assuming it was all going to sort itself.
Something had to change and I went back to my support team for advice and was best thing I did. Met with specialist nurse/speech language specialist and dietitian.
Talking through the issues made sense and came away with an action plan to record daily, food intake breakfast,mid morning,lunch,mid afternoon and dinner.
That discipline and structure was exactly what I needed and I started that very afternoon and since then have ensured I am eating something at times I was asked to. Eating little more often has definitely helped and the easy go to like yogurt/banana/boiled scrambled egg was a good starting point. Two weeks on, I am pretty much able to eat what I like now and also enjoy. I can’t always eat full portions and need to drink a lot when having a proper meal but that’s fine. Even on to fish and chips/ pizza and really enjoyed a fillet steak and peppercorn sauce. Bread and butter puddings and pastries on menu and for main meals often just zap Marks and Spencer ready meals like ham and mushroom tagliatelle etc.
For some reason I do struggle a little with chicken but in the main I would say my appetite is back and eating vastly improved since I last met with support team and in such a short space of time.
Met with speech language specialist 15th April and scope down throat to test swallow/eating function. Two throat muscles still having to make quite a bit of effort to get food down and it often takes water and second swallow to clear but told pretty normal and just a time thing.
Medication wise, again given an action plan and to cut long story short, am totally off morphine and rest of and back to my pre treatment medication of codine etc for my back so that’s another positive.
Fatigue is still an issue and I do still struggle a bit with that, although I did manage 3 nights in a row with undisturbed sleep. One of the issues can be turning night into day and up during night so just need to break that and turn on its head.
Advised to come off work again and fully concentrate on recovery and action plan and have done so and is making a difference. No stress / deadlines, pressure or clutter.Been told not to think of an exact time for return but I will be off for at least 4 weeks,
All in all, even mentally, going back to my support team has made such a massive difference and I can honestly say I would not have progressed and be back on track as I am if it were not for them.
We are all different and recovery can take its time as I have found out but learn to accept it as you have no choice. I still think my mind has overtaken my body as I want to do things and work but my body sometimes says no!
Best advice I can give is reach out to your support team – they are worth their weight in gold and I have nothing but praise and admiration for them all. They are a vital cog in your recovery so use them. They know far better than you and will keep you right and help you progress as well as monitor all side effects and lingering symptoms.
All throughout treatment and throughout recovery I have had such fantastic support and care and one of the really positive side effects is that you are not alone and you have the experts that can give you the confidence you sometimes need and that your feelings and current symptoms are normal and I personally take a lot of value, as does my partner, from engaging with them. Use them, they know what they are doing and – they care !
Some Understanding and Guidance from my Support Team – April 2019
So back at my medical support team this week and really glad I am. So specialist nurse who heads it along with speech & language specialist and dietitian together.
They are great moral support as well as giving professional helpful expert advice.
Have been on an action plan for around 3 weeks or so now and
record everything that is going into my body each day and have to log
breakfast/mid morning/lunch/mid afternoon/dinner/bedtime.Am totally off morphine
and on my normal pre treatment meds so that’s all good.
To me my action plan is doing great and I am pretty much eating what I want and ok sometimes struggle occasionally with swallow but on the whole its going great, well according to me.
According to my medical team I’m doing fine and they are encouraged by, but they did explain and discuss a few things that I was pretty much unaware of and all a little more technical and scientific than I had considered.
Although I have not really solved the fatigue issues its slowly getting better but its about the tie in with body fuel. I was told my body is still in recovery mode and they consider it early stages. Again the quote of 12 to 18 months to fully have my new normal. My body is looking for glucose and energy from anywhere it can get it and even speaking/doing work/exercise/swallow and eating is basically using more calories and effort than normal or basically if I had not had treatment.
Had scope down again,tested, and was also told I have 2 muscles at the back of my throat still prominent after treatment that are having to work quite hard to get food swallowed and down into stomach and that is expending a lot of energy apparently.
So while I have religiously been eating something each time on my action plan sheets there is a distinction to them between good calories and wasted calories. Right now good calories is fuel like puddings/cream/full fat yoghurts/fruit/normal meals etc but things like chocolate, my curly wurlys, they consider wasted calories/energy and not adding any nutritional value which is the key word. I drink a lot of water/diet coke which is great for throat muscles and hydration but its not adding any nutritional value. To that end I have been advised to keep on with what I am doing with drinking and eating but they also want me back on supplements ie Complan powder shake. This is to give bursts of energy and fuel and suggested I have one to hand when I am out and about or at appointments. If im really tired when out, take an energy shake. Have to take at least 2 a day. Its either that or the bush tucker Ensure drinks.
That’s the gist of but I actually found it all quite interesting and all these little complications and components that are more technical/scientific and tied together more than we know or consider. I am also getting referred to dental consultant so gums can be checked over and another specialist nurse regarding special neck exercises for the drooping/prominent change around neck area.
Back in two weeks and also consultant appointment but to anyone who might be wondering re recovery, no matter if its short or a little longer like myself, there is a real tie in with nutritional value and non added value items like my curly wurlys/gummy sweets for example. We also take for granted the functionality of swallow and exercise/work/outings etc but again it was explained to me that we use calories far more easily, my body is still running a marathon and there is a whole tie in with all these different components. Most of us quote we area all different and we are so while this may really not apply to all and many consider recovery ok, some can take a little longer and I guess it helps to have some understanding when that is the case.
I know this may not be of interest to all, but it is to me and if it helps even one other person in similar circumstances then I consider that a good thing but hopefully of some interest to some others as well.
I’ve made such great progress since action plan but need to consolidate
this with the guidance of my medical support team. I’ve to stay off work for
further 6 weeks to concentrate fully on action plan then have a structured slow
phased return to work with their aim to have me fully functional again.
The positive from this as well was that I was told that when body does all decide to all gel together it will suddenly happen quite quickly. They also advised that any weight loss when back to normal would have to be done in a controlled manner.
I will be keeping blog up to date with progress on my action plan and outcomes from my various impending appointments if anyone is interested.
Onwards & Upwards
Medical Support Team Update : 30 May 2019
So a little update and following my latest appointment with medical support team yesterday.
To put into contex my tretament stopped last November and I have been having lingering side effcets a little longer than some. That said, I was reminded my my specialist nurse again that recovery to a new normal can take up to 2 years. My consultant also refers me to this two year period of road to recovery.
This will obviously mean different things to different people but I guess the point they made to me is that some will have lingering side effects that dont really stabalise properly for around 2 years.
Also to bear in mind that some, including myself, who have had tonsils out that this operation itself can take a full year to recover from.
All in all I have learned to accept from the people who know what they are talking about and I tend to follow professional advice. Have also learned there are certain things we can do to help ourselves and why I have found it so helpful to be back in the support system and with an action plan.
Back to work next week on protracted phased return with 3 days a week Mon/wed/fri to start with and 3 hrs a day. This also comes with a common sense approach and is not a tablet in stone.
I have been referred to a clinic called “move me” and they will work with me to design an exercise plan, again baby steps, and work out whats best for me and what to aim for, I will do this in my own preferred environment eg health club with bike that supports my back but they agree a plan with me.
Fatigue still not 100% but I definetely see an improvement and not up during the night and managing to get undisturbed sleep now. Still need bed during the day sometimes but this is getting less and less so I would say starting to see a brighter light regarding fatigue.Always been an early riser to up around 5/6am as usual sometimes but I’m so pleased to see at long last improvement in this area.
Diet and appetite was main discussion again as fuel intake is the biggest driver.
Dietitian again re iterated the science around good calories and wasted calories and at my particular time i should now be looking at a more healthly balanced diet.
The good calorie/ wasted calorie explanation is around trying to make sure we get as much nurtitional value as we can as fuel and to try and avoid wasted calories like chocolate/sweets crisps ( if able anyway). These are wasted calories,add no value for us and will give a high sugar hit but also contribute to any fatigue issues. A lot of us were advised to eat high calorie items during recovery like full fat milk/yoghurt/creams etc and that is to try and pile on or at least maintain weight during recovery as much as possible. the radiotherapy is still working some time time after treatment stops and our bodies are looking for glucose/evergy from anywhere it can get it. If we dont/cant eat then body will look at reserves and thats when we start to lose weight/lose muscle as body goes for fat or fuel anywhere it can. Was also told to imagine that after treament your body is still running a marathon. While understandable, so many totally underestimate the recovery period and time it take along with the side effects after treament brings.
It is not easy , i know, but I kinda tried to think of fuel intake as medicine rather than meals when I was at my worst. That said I was a case in point where I coundt/woudnt eat and was on 6 ensure supplements a day. and at one point only took 2 a day and my body eventually went into starvation mode I was told.
We each have our own way of dealing with but what has definately worked for me was going back to the support team and working out and sticking to an action plan.
Basic outline re food action plan is that I log everything that is going into my body on a sheet and then we can sense check with team and adjust if necessay and discuss progress (or not)
So little breakfast/ something mid morning/lunch/mid afternoon and dinner.
Sounds a lot of effort and it can be but I forced myself religously to make sure I logged something at each time on the sheet and knew I had to report back what was logged. No point in lying/cheating as its only to yourself so if I missed a meal or time I left blank but these were few and far bewteen.Little more often is the key and breakfast might be oats with milk or a yogurt..mid morning…banana/yogurt..2 soft boiled eggs lunch..brioche roll if able..soups are ok as are ommelletes/stovies etc that are all easy to disgest but slowly building up energy. Avoiding wasted calories like choc/sweets etc helps. I sturrgle with chicken which is common, but stovies, slow cooker cooking with tender beef worked with mash..just some examples/ideas
So this is not just made up by myself as an idea/opinion and was advice given by my medical support team who have been fab and monitor my progres all along and for as long as I want them to.
Back to one of the favorite saying on here in that we are all different and thats true and what might work for me might not work for all, but if it helps even one person who kinda falls in line with my revovery road or experiencing similar side effect issues then thats a good thing.It may be worth a try or at least be a catalst for discussion at any medical team meetings.
As well as there being a science to our treatment there is also a science to our bodies and recovrey and I guess the trick is to find the best solutions possible to help us nudge foward in a realistic timeframe.
I’ve updated my blog a little for anyone who is interested and I thought i would update my thread here as well as not only is it theraputic for but it does show the progress made since I first started this thread last year. It’s been a great community spirit with so many contributions and helping one another.
I hope some take a little from the medical team updates and hope it helps at least one person with a little more understanding and coming from the professionals.
note: i have an excel spreasheet that i made up to log/record my fuel intake each day and then used them to dicuss at team meeting. My email details are on my blog if anyone would like a blank copy and an example of what i completed and am happy to send on an attachment file that can be customised to be used by anyone.
Drink, then drink again then drink some more !
Onwards & Upwards and to Infinity & Beyond……..
Dental Consultant Appointment and General Update 10 June 2019
Hope all doing well no matter where you are on your journeys and all keeping good progress.
To keep up to date and with my blog a little update from my appointment today with dental consultant.
Feel like I’ve still had an issues with gums on left side etc and was glad to get appointment with top man in hopspital to assess.
Yet again re iterated by a professional that I’m still early stages as far as they are concerned and as I had teeth extraction as well then zapped with radiotherapy he would expect on average a year or so before gums were back to some kind of settled new normal.
He also did state that for many their mouth/teeth and function will never be the same as it was before.
Had a good look at teeth and gums and was lookiing for bone dry gums but said was some moisture there, not too bad, so not really concerned. Felt a little tightness at left upper gum and said there was like a little ragged piece that was obvious and could just be a slow healing socket but wanted a furthre look and 2nd opnion.
Took some x rays there and then and we looked at them around 10 mins later on his computer. Impressive to get there and then as he then showed me teeth/gums then went over some of the options re planning the way ahead.
So the upshot is that as a brucie bonus I have to go in for root canal treatment on one front tooth, then at same time he is going to anaethatise gum and remove this piece of skin and hopefully that will help. He also wanted to wait another 3 months to put a little more distance on recovery period time. It just shows that anyone worrying about the length of time for recovery in all areas and full functionality as before that it is not a worry for professionals and they will quote all this is perfectly normal. We are all different and can take different recovery periods but at the end of the day I think the point is not to worry over recovery periods nor set exact times and our bodies will find its own timeline and taking into account our own personal circumstances.
Was also told had to use Tepe Interdental brushes to make sure good oral hygene is kept up and all plaque removed during cleaning.( get from ebay or Amazon and different colour depending on teeth. I need 2 different colors to use on different teeth/gums) I am also to get some special toothpaste on repreat prescription that I have to use from now on.. I think i have the name right in Duraphat and i think its about £16 per tube so thank goodness for our NHS. The cost of our treatment and medications throughout this does not bear thinking about and would be interetsting to know what the overall cost in terms of treatment/ NHS time/medication etc all adds up to just for one person. We generally take for granted when we dont need it but are so glad of it when we do.
Back baby steps at work and finding little tiring but enjoyable but making sure all slowly slowely and I feel a little better that I am constantly re assured that even my recovery period is considrered normal to the NHS professionals.
So dental plan that from start to finish will be approx 6 months as im also getting a crown post and new tooth as well as other treatment, like addional tooth to benefit chewing so at least I am in system and in good hands
Also have a lymph specialist nurse appointment soon to get some neck exercises progressed as I am still showing a ring around my neck area.
Hope doesnt come across as negative at all as to me its all very positive in that I am being well looked after and re assured all ok and normal even though I may be having a different recovery timeline from some.
Last strong message I took away, again, is that some of us will eventually find a new normal and that not everything will fall back into place 100% as it was before treatment and we have to adjust and accept whatever that will be. I also took away a message that we also have a part and responsibility to play in our own recovery and its not just down to professionals/treatment and medication and we ourselves need to adhere to advice given, make sure proper oral hygiene maintained, proper diets etc are followed.
So will leave on a positive note to everyone and will also update my blog with this as like to maintain.
Onwards & Upwards
Update 15th June –
A Year Without Alcohol
Just wanted to share that this is my anniversary when I was hospitalised last year on 15th June and put on a drip for a week re mis diagnosis and strong reaction to wrong medication Anyways that’s another story I’ve mentioned before.
Nope, it’s also my anniversary of exactly one year of being alcohol free and I would be interested to hear from others willing to share on their take on alcohol consumption with this type of diagnosis and whether adjustments made or still able to enjoy. (or not)
Don’t get me wrong, I’m not judging or saying one way or other, as each to own.
My own honest reflection is that I drank far more than I should,have always vodka coke/soda lime and not a great beer fan unless in Tenerife :(..
So added to fact I’m a bit OCD and kind of feast or famine mentality, I decided last year I was not going to drink again.I’m surprised how I’ve not bothered one little bit or missed at all as I’ve been heavy drinker for years.
While you can never say never, my intention is to stay tee total and maintain a no alcohol lifestyle. Big test may be in couple years when I hope to hit Tenerife again as it’s the whole drink in airport lounge/plane and relxo in the sun thing and then I go feast again :). hope not lol. Maybe if I looked up the word moderation in the dictionary to see what that actually means.
I couldn’t just now even tho I wanted to as still recovering/medication.
Anyhoos for me, its just another personal milestone on this journey that I wanted to put in my blog.
Anyone got anything they particularly miss that they know probably out of bounds now..Mine is definitely liquorice toffee/Thorntons toffee and blackcurrant and liquorice sweets. Darn it – I’ve just annoyed myself for mentioning 🙂
Hope I find you all well no matter where you are in this journey.
Onwards & Upwards
Update 23 June 2019 –
Appetite/Eating – treatment end/recovery phase
This update is an extract from my thread on Cancer Research UK and responding to a few who struggle with appetite/eating post treatment
I had this problem and I personally had the cancer treatment after being diagnosed with tonsil cancer last June, still in recovery, so can tell you first hand for real how difficult this can be sometimes. It’s not easy but I understand as well as sympathise.
To put some of this into context from my own experience.
Its not always the case we won’t eat or cannot be bothered or do not understand that we should eat something or take our Ensures. In fact in some cases, like myself ,sometimes we can’t eat. As hard as that may be for others to understand, its harder for us going through it and sometimes difficult to explain.
If it were just that easy to have others say to us eat something.
My consultant and medical support team did take the time to further explain just how serious the treatment we have had and what we have had done to our bodies.Some fare better than others after treatment while some, like myself can take a bit longer to get ourselves together.
It can sometimes be as simple as nuasea and feeling physcially sick but add that on top of recovering from 30 blasts of radiotherapy each day while being so exhausted, debilitated, in pain/discomfort, throw in some mucas, maybe oral thush, dry mouth with no saliva that aids our eating function, neck sore/red and burnt or itchy,constipation from Morphine if you dont take something like Laxido etc etc
Oh and our taste buds are shot over and above no saliva to help eating function and putting things that might taste like cardboard or metallic doesnt help motivate us.
You get the ( honest ) picture I’m painting and while we get it we should eat, all these things can play a part in why we cant.I certainly wouldnt wish for this or would I wish this on anyone else.
The light at the end of the tunnel is great, eventually, but its a tough old journey we go through with many faecets of the fall out of our treatment that effects our recovery all at once.
So I guess I’m trying to outline some perspective from a patients point of view but words are sometimes not enough to explain how we feel or what we go through to others.
If its something as simple like nausea or feeling sick which puts you off eating I was prescribed Metoclopramide Hydrochroride for anti sickness and that worked a little for me while I was nearing the end of my treatment. I was advised by my specialist nurse that I should be drinking 6 Ensures a day to get some kind of fuel and energy ito my body. Thats a hard one and not always possible.
When I was in full recovery mode, eating was more difficult and I had a real appetite issue and struggled with for some time. I lost quite a bit of weight and eventually I went back to my medical support team who gave me some great gentle advice and we came up with an action plan to try and help.
They also put into context again, that my body was still running a marathon every day and was looking for fuel/glucose from anywhere it could get it and needs more calories than normal to try and even maintain just an even keel.
So action plan – I met with my medical support team of specialist nurse/speech & language specialist and dietician – first of all it was determined that my swallowing function was reasonably ok so that was not a barrier. I was then given an explanation and help to understand the difference between good calories and wasted calories ( I posted few pages ago with a little more detail ) as what we are looking for is nutritional calories that will add value/help and also supplemented by Ensures or Complan for a period. They also did explain to me that at that time, as I had waited so long, that my body was pretty much in starvation mode looking for scraps of fuel, and that only source without fuel input would be body fat and body muscle, which in turn aint going to make us feel better and hinder recovery period.
I was given sheets/logs to complete and I had to write down everything I put into my body and was to try and eat small portions of what i could and was little and often rather than main meals.
Breakfast/mid morning/lunch/mid afternoon/dinner/bedtime.
So i tried to get into this routine, baring in mind fragmented sleep and fatigue made the timings difficult sometimes, and was advised to try and up the calories. Things that went down more easily like full fat yoghurts/scrambled eggs(with cream in) cottage pie, rice puddings/custard etc
May not work for eveyone but I felt that by going back to the medical support team and hearing it from them and having a plan mapped out plus I knew I had to go back in 2 weeks and hand my sheets/logs back into them to show them what I had managed. They will weigh you to check and no point in lying to myself by filling in fake fuel intake. and this gave me a strange mental motivation to show them and myself I could do it. I did have the mentality that I was taking medication rather than enjoying food and that I was making myself better. Whether I enjoyed any of it was irrelevant.
I never had a PEG fitted and not was I given an option for some reason and was never discussed. not that I wanted one. There is some great advice ( your medical support team can help ) over PEG and the benefits of having and that also maybe a route that could be explored as a solution.
Sorry for the long explanation but from a patients point of view it can just be a time thing and eventally something has to give and the alternative is they will do it for you in hospital if you cant manage.
Luckily my partner was great, very supportive and understood that I was not doing on purpose and was gently encouraging trying to help any which way and not adding to agnst by showing any personal frustrations felt. Would not have done any good and I would have responded accordingly. I did feel bad for her as I knew she was worried and just wanted me better but at that time I felt powerless to help myself for the above reasons.
I hope gives some context/complexities into the frustrations and understanding of some of the underlying reasons why we cant sometimes eat and maybe worth while trying the anti sickness meds or if like myself it was a little more of drastic measures required, then back to the medical support team to outline where you are and get an action plan and have them support/monitor you.
You can be kinda left to your own devices after treatment so I had to go back to them eventually to explain where I was in terms of appetite/fatigue recovery etc,
I made up electronic version of the sheets given in Excel and logged everything I took and that was quite a good focus. I didn’t want to go back and show them a bunch of blank entries and was no point in lying to myself and filling in fake food/liquid intake. Happy to share the spreadsheet and examples of what I recorded if you wanted to email me , I can send an attachment.
No intent to cause further against but the above does inject a little reality into our real world during recovery from this difficult treatment.
To leave on a positive, my saying of there is light at the end of the tunnel is actually true and although its a tough journey and often a long one, we do nudge forward.
Hope helps and taken in manner intended, and hope for resolutions that fit circumstances best
Onwards & Upwards
Post Scan check ups (July19) – Medication and Return to Work
At further consultant check up this week following scans and all looking good and no concerns at all.
I asked the question of whether there would be any more follow up scans say after a year maybe but was told no. They put scope up nose to have a look at throat and have a feel of neck and look in mouth. Was told that check itself would be the first point of anything further cropping up and at an early stage, so all in all quite re assuring.
Got a wee lecture about diet and was basically told to stop eating any rubbish now and no need for supplements/creams/full fat milk/yoghurt or indeed crisps/curly wurlies.
Back to a full healthly varied diet to include plenty fresh fruit, veg, fish,chicken etc and foods that give longer lasting energy like porridge oats in morning etc Maybe just a personal thing but I still struggle a little with chicken but told thats quite common.
Just a word on meds and in particular morphine.
For those of us who have had to take it ( among other meds ) and at quite a reasonable dose strenghth the advice is you should not just stop but phase out gently and over a period of time.
Ive been doing a 3 day rule, which I understand Hazel did as well, but as example 20g (3 days,) then 17.5 (3 days), (15),(12,5),(10),(7,5),(5),(2,5) then off. You get picture and a more controlled and advisory way to let body acclimatise. I use the analogy to divers having to slowly come up from deep waters and little by lille to let body acclimatise. Aware not all had such high dosage nor took any but many of us who go through this treatment do and on medical advice and control.
For those like myself who work full time we also chatted about work plan. This will obviously depend on the nature of your work if you fall in this category but again I can only go by myself. I basically work in HR/IT environment as senior manager which can be quite mentally challenging and taxing and can be just as tiring as physical work.
Cut long story short I went back to work too early and had to go off again and recently while I have been on a phased return I could go from feeling great and working quite a few hrs more than normal to then paying price for. Kinda like the meds and advice is to let the body aclimatise and find an equilibrium rather than a peak and trough scenario. Simple example might be on a phased return to work 4 hours and if feeling good, still stop and conserve energy and if feeling not so good, still try and do the 4 hours to try and get body used to a more balanced approach, then move up the number of hours worked. Will definitely not apply to all here, but for those in similar circumstances, again some medical advice on the practicalities of re aligning our bodies again.
What I have taken from it all is that we have been thought such serious treatment and our bodies have to adjust accordingly and doing things by baby steps and gently is probably, on balance, for a lot of people a more controlled way of having body and mind synced back into whatever our “new normal” will be. Sometimes trial and error and not always exact ongoing regular medical advice scheduled after treatment/scans
Morphine During/After Treatment
Back to the same chant is that we are all different but I’m sure this may ring true for some or even one person.
Little background in that before diagnosed with tonsil cancer I was on codeine for years due to a bone on my spine they cant operate on, so body is used to opiate medication.I also have had quite a bit of discomfort from my gums throughout and have planned dental appointments coming up to remove some skin that has been aggravating according to x rays I had taking along with slow healing sockets from teeth extraction so the pain from that perhaps could have been controlled with something other than morphine as well
So while on treatment and then recovery ,codeine was stopped and replaced by morphine. First of all by oramorph then upped to MST tablets, which are slow release tablets that are taken 12 hours apart to ensure in system 24 hours and can also be topped up by oramorph.
At my worst I was on 2 x 20mg and therefore 40mg daily prescribed by my support team.
A few weeks into recovery this was reduced to 2 x 10mg tablets and oramorph when needed.but still 20mg a day and oramorph that added to the dose temporarily
So this continued right through my recovery and in total was prescribed morphine by my GP for approx 9 months. With hindsight, I think this was far too long a period and too easy to keep the medication going. I now believe that morphine has been both my friend and enemy on this journey and has been a contributing factor in delaying my recovery period.
I tried to stop myself but did too soon by just stopping. That just induced cramps,noticeable anxiety,sleep fragmentation,agitation,sweats sometimes among other effects so long story when I explained to my GP he promptly put me back on with no plan or real monitoring.
Aware that my body was by now used to this level of morphine and eventually I took the bull by the horns as this recovery period was just going to continue with me being in my bed so much with fatigue and not functioning properly. To sort sleep fragmentation my GP prescribed 14 day course of sleeping tablets which looking back now, was perhaps not the most prudent course of action to add on top of level of morphine prescribed. Once finished these I decided that enough was enough.
So from 20mg, I reduced by 2.5mg every 3 days and after 12 days was down to 10mg total in 24 hr period. At this level I then had few stomach cramps, little anxiety and sleep fragmentation but I stuck with it, determined not to continue as it was.Lasted 2/3 days most then calmed down.
I then switched to my normal medication that I was on before cancer diagnosis and it’s like night and day now and as if a switch was turned on. The effect was pretty immediate apart from one night and I’ve felt so much better, lucid, out and about a lot more. This has been a massive transformation in just one week since I stopped so cannot be coincidence. I’m back at work baby steps 4 hrs a day and planning to up over a short planned period and, touch wood, I’m sleeping from night till morning now and a lot more normality has crept back in.
Those who have known me on here know I have had a longer recovery period than most and while I’m now really pleased and far more motivated and lucid, it does actually raise a few questions around this powerful drug.
Do we need it during treatment and recovery, for some absolutely yes and perhaps at dose prescribed. Do we need it over such a long prolonged period like mine, I would now with hindsight seriously question and certainly in my case, no. I think, depending on circumstances it’s a case of getting the balance right of when we actually really medically need it to help us and when reduction and removal and take less powerful medication that would be adequate
I don’t really have any major solution and I’m not medically qualified but sharing my experience in the hope that my little chapter on this may help one person assess both the levels of dose and if its being prescribed over such a long prolonged period after recovery, then perhaps it’s a conversation with GP and or support team, or unfortunately try and sort out yourself.
If you do find yourself on morphine for any length of time then its really important that you just dont stop overnight. Reduce gradually perhaps every 3 days until you feel body is then comfortable to cope with. My GP thought my 12 day period was too quick given length of time but if I’m honest by now I was starting to challenge the medical advice within myself so was determined to carry on now myself and proved it could work and I’ve been absolutely fine since off last weekend. I will not be convinced otherwise that it’s a coincidence.
So I hope this helps a little but also doesn’t not put anyone off from taking during and after treatment depending on their circumstances. I’m just trying to outline that it’s perhaps really quite prudent to assess on a more regular basis on the length of time prescribed and whether it would be more beneficial to slowly reduce then come off rather than continue with.
I’m not blaming GP or anyone as I have a responsibility as well, but we do tend to listen and take the medical advice we are given but there is also a point that a 10 minutes chat/assessment in a GP practice aint gonna always provide the best course of action for you and then you get in the cycle of the next appt, more meds,nex appt etc.
It’s just an honest assessment and will not apply to that many on here but it’s also been a real part of my recovery, right or wrong, and if I could sell hindsight, I would make a fortune.
I genuinely hope this helps at least one person.
Onwards & Upwards