Post treatment 3-6 Months

Early December, and am hoping to get more taste etc back for Christmas, but not holding out much hope, although able to eat somethings, still rely on some milkshakes etc.

PET Scan planned for mid December, this is designed to show if I have any sign of cancer left in my body, they inject you with a liquid that is dispensed in a very controlled way, wait about an hour, for the liquid to go round your body, then take you through to the scanner, which lasts about 20mins etc, overall a pretty easy scan, nothing to get worried about. 

Appointment with Oncologist on 22nd December to get results from Scan, to be honest again hoping for the best, but preparing for the worst. Unfortunately it was confirmed although cancer was know where else, but some remained in the lympnodes on the  right hand side of my neck., I was told that cancer still seemed to be reducing and maybe dying away, they decided that I would get another scan in early February to see if clear at that point. Until next scan eating an drinking continued to improve, although tastebuds and saliva remained poor, energy levels slowly improved.

Through this time Morphine gets reduced every 4 weeks, and it was not until much later I realised after googling it, that some of the extra stuff I had been going through was due to coming off Morphine (being cold, runny nose, irritability, insomnia etc) even though it’s reduced slowly, you still feel some side effects every time it’s reduced, even when I took my last doseage, it took about a week to get rid of side effects. Looking back, I started getting Morphine when pain was very sore after PEG tube, and always went with what Hospital was saying, probably could have been off it much quicker? although everyone has their own levels of pain etc. 

Next PET Scan held on 1st February, and follow up meeting with Oncologist on the 9th Feb 2021. At the previous session they had explained that they may have to operate to remove lymphnodes. So as expected Cancer seemed to be still alive and growing a little in the lymphnodes, so decision was made to have an operation to remove some lymphnodes, rather than going through more Radiotherapy etc. Told some side effects of problems with loss of feeling/sensation on neck, and problems in shoulder.

Pre op meeting all usual checks weight, height etc, also got Pfizer vaccine prior to op also. Day of operation in at 730am, and taken down just after 9am, operation lasted approx 3-4hrs. They ended up removing 13 lymphnodes, but wound was glued and pretty clear, although large dressing on it for 24hours.  Allowed out later that night, so good to get home, given meds to cope with pain, and leaflet on exercises to deal with shoulder etc. Removed dressing and some paper stitches over next following days. Started exercises  a few days later, and certainly shoulder definitely affected through operation, as I lift my right arm, apart from it being sore, it has less movement and is a significant difference to the left arm., looking in the mirror, if I shrug my shoulders, there is about 3 inches a difference in height, so need to step up exercise etc. In conjunction with what I’ve already mentioned, I had follow up sessions with dental teams etc, and have planned appointment to get PEG tube removed. 

Follow up meeting with Specialist who did the neck operation, was happy that the wound was healing well, and confirmed that I could return to work in May.

It’s 26th April, and chunks of Scotland getting back some normality from Covid, with Hospitality and retail opening up along with gyms etc, for me I am at the hospital getting my PEG tube removed, offered some Gas/Air which I would recommend. Nurse fully talked through procedure, just had to lie back on bed, still had normal clothes on, she cleaned the area, and added some gel and moved to tube about to ensure it was easy to remove, during this I was told to take deep breaths with the Gas, TBH it does make you feel very lightheaded and bit spaced out, which was needed as nurse wrapped the tube round her fingers and yanked the tube right out...It was a little painful, but maybe felt the tug more than anything, it stung for about 30secs. Nurse dressed the wound, and left me for about 20mins for recovery. The plastic clip roughly size of a 50p that was in your stomach, as it had been in your stomach at actually ends up like rubber so actually folds up when being removed.

For first few days, just watched I did not eat and drink too much, as appreciate inner stomach healing, and did not like thought of some food or liquid leaking out my inner stomach...given dressings away with me to keep wound covered and clean, roughly take about 1-2 weeks to recover fully, only had to ensure did not go swimming for few weeks, until wound healed.

So few months till get next scan, to see if all clear, but still follow up meetings with Oncologist and dental teams planned.

For now will start to focus on getting back to work, and manage appointments as they come along, certainly walking much more, even managed to do 10km walk round local park.

I fully appreciate for me it has been a tough and challenging time, but I know I’ve been lucky, many people do not recover from this horrible disease, best thing I can do now is take greater care of myself and enjoy life and family much more, as life is too short

Pics above Hospital post neck operation and scar....other photos 4 weeks apart,, top one after a 8km walk building up energy levels for returning to work. 

9. Post treatment first 3 Months

Best news during this stage is no more new damage can be done, as treatment has been completed on 11th September 2020, although as I had previously stated the radiation still works away for the first few weeks after last session. 

Certainly medication getting from GP, is much easier, either order through link and get picked up, or can be delivered also. Abbots also call to check on level of Milkshakes and equipment for PEG tube. Hospital certainly give you lots of information and contact details. 1st follow up video call 1 week after last session, video call was with Oncologist nurses, as well as dieticians and Speech therapist (video calls much easier rather that trailing out etc) Covid has certainly brought in better ways of doing things. Appreciate still off work as levels of energy still low and inability to eat and drink makes life a bit harder. It is something that we all take for granted, is the ability to eat and drink more or less what you want, years of finding what you love and hate, to suddenly have that all taken away should not be under estimated, getting well is the priority, but losing this takes a bit to get used to, and you will. Sleeping gets better as days go on, and remember to to try and get any meds reduced ASAP, especially if you are still taking Morphine. 

In the early weeks after therapy I could not eat, drink anything. It got to the point where I fell out of love for food, just could not be bothered even trying to try things, I was conscious I had lost some weight, and did not want to put to much on?. 

After 1 of the video calls, I agreed to try harder with food, as I knew i had to see food as medicine, as I’m had to get back to some level of normal, or the PEG tube could not be removed, so i started doing things in reverse, trying custards, rice pudding etc first, early days could still not take tea or coffee, so was relying on water to eat things, each week managed to eat a bit more, although very little taste. TBH I was finding I could maybe taste some of the first mouthful, but then very little after that, so it was only heat and texture I could feel, but try try try,,,,defo found plain things tasted better again, and processed foods were not very good. It was strange that I had found taking a notion for certain things, Bagels which are not the easiest to eat with a dry mouth, but every morning I have a cinnamon and raisin bagel with butter, as weeks months went on was able to start drinking hot drinks, although stayed away from Dairy and soft drinks, as they tend to leave a bit of a furry mouth. Mouthwashes 4xday certainly helped a little to cleanse the mouth, and still using electric toothbrush now, certainly helping. 

Best tip here is keep trying to eat and drink things, and exercise little more each day

Top few pics at Xmas, other ones early December showing skin on neck all improved, and also some effects from Morphine.....also had a go at growing some facial hair ( funny as nothing was growing on neck, hair grew quicker and thicker around face)

8. Weeks 5 and 6 Treatment continues

Weeks 5 and 6 were similar weeks with few bouts of sickness due to coughing up mucus, not a great feeling being sick at the best of times, but when your throat is in a bad way, the taste and burning sensation in worse. Saliva totaly missing now, only seem to be able to produce a white bubbly type moisture which is not nice, so using more and more tissues to wipe the stuff away from the mouth. Taking 7 Ensure drinks and been placed on Insulin to help balance sugar levels. Also as no chemo i feel the damage by Radiotherapy is getting reduced, and with sugar levels better, feeling better. Sleeping also better getting used to 3hrs sleep and taking some additional Oralmorph then getting another 4/5 hrs sleep is working out not to bad. The lump in my neck continues to reduce in size, down to the size of a peanut about now. Drinking water is also very sore, never thought something like water could even be sore to drink, I do try, but find it very hard, have to compensate with adding more fluids through the PEG tube.

Found especially in week 6 skin on my neck was starting to get very red and break up, continued using the cream Epimax they gave me, which was a little soothing, even after the last radiotherapy, it still works away on the skin and tissue for a few weeks, so do not think any damage will stop after last session. 

Through the whole treatment I was able to drive myself to and from Hospital, but I only live about 4 miles away. Except for the days I had chemo, my son dropped me off and picked me up, mainly as a precaution, but everyone is different, and how we react to treatment again is unique to you as an individual.

Wee tip, as I’ve said just because treatment has finished, is only another stage, take your time, there will be no quick recovery.

Top few pics again showing damage from Radiotherapy, bottom pic, last day of Radiotherapy 

7. weeks 3 and 4 treatment

Week 3 continued where 2 left off, eating becoming quickly very hard, mainly as foods nipping the throat as opposed to swallowing. Chemo went ahead, blood levels were ok, although chemo does make you very tired and definitely a reason why Radiotherapy is allowed to just create damage to neck and throat, as chemo takes away any part of where body would normaly repair the Radiotherapy damage. Taking more Oralmorph as the week goes on, unfortunately made the mistake of not upping my intake of the laxitive drink, as the Oralmorph can give you trouble going to the toilet. So by the Thursday i was struggling big time to do the toilet, to be honest it was one of the worst feelings I've ever had, had several hot baths as well as taking about 6 Laxitive drinks the whole day, eventually by 9pm that night i was able to go the Toilet, what a relief, never plan to repeat that mistake. Friday starting to rely more on feeding tube now for most medicines, have had to get liquid for my diabetes tablets also. Even small pots of custard with cream, i am finding it harder to take as it is nippy on the throat. Week 3 also sleep remained the same getting about 3-4 hrs max at anyone time. Start of week 4 Sat was looking forward to weekend, that was short lived, after taking all my medication, i was sitting relaxing watching TV, when i started to feel my heart start to race, i went and lay down to relax further, again this did not help, even started to watch Still Game, as thought that would take my mind of things, but no, heart continued to race, eventually i called Ambulance, to cut long story short i was admitted into Coronary Care unit, and after days of tests, it was found i had Hypertrophic Cardiomyopothy which is a thickening of the heart muscle, a Genetic issue, which has been highlighted by the Chemo, so Chemo was stopped, and I will be checked every year on my heart. Radiotherapy continued from the Tuesday, all meds and food all through tube also. Got home on the Tuesday night. Week 4 continued with no further issues. Look forward to end of week 4, and hoped the weekend would be more relaxing than the last.  

Pic shows hairline at rear taking a hit with the radiation, other pic showing in A+E as chemo highlighted a genetic heart condition, shows how much cancer treatment can put body under real pressure. 

6. Weeks 2 Chemo and Radiotherapy

So this week we enter and exit week 2 of Treatment.

Suppose good point of reminder, is everyone's journey is unique, as how your body copes and deals with different levels of treatment is always going to be different. My initial mistake was forgetting, that getting Chemo as well as Radiotherapy, meant that Chemo basically kills your system from trying to recover any treatment from the radiotherapy. So basically meaning that Radiotherapy is constant downward scale of damage, with body not much fight to heal as it goes....Remember radiation cannot distinguish between good and bad tissue, so all gets damaged.

Started the week, with being told off for losing 6Ib...Again your body is working so hard, even though you may not be as active, you are burning calories very fast - so you do have to force calories down (would be easier if i was not diabetic).

Chemo and Radiotherapy all went as planned this week, but symptoms increased also.

Not sleeping whole night, Dry eyes, heartburn, dry mouth, sore throat, Taste-buds decreasing by the day (left with 15% by end of week) build up mucus, struggle to find things that feel quench your thirst. Weather been warm this week also, which has added further issues, mainly because i do not like the heat, but obviously have to stay away from the sun,,,neck area getting enough Radiation.

Even though throat has been sore, still managed to eat most things, although some items taste disgusting....so its a blessing when you taste something and it tastes almost normal,,,,i have found so far blander tasting foods seem to retain the same flavour?

Created a game with Granddaughter, where we would sample lots of things to see if i could eat them, she loved the ice lolly challenge, bought many other sweets also like jelly babies etc,,,,but the search continues.

Away to enjoy my Sunday, before week 3 starts, although looking forward to see what support the team can give me for my mouth and throat.....

Pics above....trying more soft things to eat, plus medication and ensure shakes (food supplements to try and maintain weight).

Onwards and upwards.

5. Main Treatment. Chemo and Radiotherapy

On 29th, attended an introduction session, showing me round chemo area, and also taking some details, as well as blood. It was a good session relaxed, and removing and fears.

My son dropped me off for my treatment on the 3rd August, I was prepared with bags, and even change of clothes etc along with some tech, to keep me busy during the day. I went to the Chemo area, as my bloods were taken week before, meant I could go down for my Radiotherapy session first. (Every other week I will need to get bloods taken and checked first. So my first session of Radiotherapy went well, they took 5mins just to ensure all measurements were all spot on, took about 10mins once it started. Thankfully I did not have any issues with dizziness etc, it was actually bit relaxing, just tried to think of positive things. Back up to chemo area, before they got me hooked up with treatment, they did agree to give me some additional antibiotics also, as there was a small infection at the PEG tube (it is common as it’s an open wound) 

Rooms are made up with 6 bays with chairs, they discussed, how they would place a line in my left hand, and start to pump in various liquids, (Steroids, Saline etc) these are to help keep the kidneys also. Chemo drug Cistplan was then put through, then followed with more flushing fluids. Whole day was relaxing, teas biscuits and dinner brought round. They do monitor how much you are urinating, just to make sure you have passed enough. My first day, I may have set a record, as the antibiotics also help you to urinate, along with my Diabetes, felt I spent more time in toilet, rather than sitting down. Got out at about 4pm.

Radiotherapy continued Tuesday to Friday 920am each day, all went well.

Few bits to note for first week. Do not underestimate how much your body can be affected even in the first week, TBH I probably did not rest enough, to the point where I had an episode on the Wednesday night where my Heart Rate would not go below 114, partly probably because tiredness and getting myself worked up possibly, I did call the relevant helpline, but did manage after few hrs to get it below 90. So please plan, everyone is different and level of treatment is unique to you. I certainly rested a bit more over the rest of the week, and felt the better for it. 

Other small changes. Felt head a bit cloudy at times and definitely felt a little more tired (Chemo side effect) Mouth was a little drier, and felt my throat start to get a bit more tender, but started using Humidifier. In summary after first week it felt I had aged by about 10-15 years. 

On the positive front, even after week 1 I have felt the larger lump start to reduce in size.

Weekend off with no treatment, so plan is to chill out, although the hot weather over the weekend, means I will be staying indoors, to keep my neck etc away from the Sun...better to be safe than sorry. 

Pic above showing unit for Radiotherapy and mask already on table, other pic is ready for chemotherapy 

4. Treatment Part 1

 is what i class as Pre Cuncer Treatment.

I thought that after hearing, that my Cuncer had a 90% success rate, then the road ahead with the Chemo and Radiotherapy was not going to be easy, but what i was not ready for was, the treatment required before the Chemo/Radiotherapy. The bit to

remember through all of this is, Your body is still trying to fight the cancer on its own (it does not realise there is some big guns coming to help) 

25th June 2020 - Video Call from Dental Team

Again due to Covid -19 the Dental team at the Hospital have only viewed an Xray on my teeth, that was done few days earlier. As the radiotherapy can be very evasive to the Jaw and mouth area, concern more in longer term with Muscles not allowing mouth to open so wide, to allow future Dental treatment to back teeth, also the bone along jaw could become brittle also. Now due to COVID they had changed procedures, where they would try and avoid treatments where possible, they thought my teeth were strong enough in the gums, they would normally remove back teeth, they left the decision to me. Great - TBH i had many problems with my teeth in my early years, basically 2nd set front teeth all grew in not great, so went through years of treatment, which left me with a bit of a fear, as Dentist was not exactly child friendly, eventually in late teens i got most of my front top and bottom changed to crowns...So to be given an option 1. Do nothing and hope for the best or 2. Go ahead and get 7 back teeth removed. Yes believe it or not i went for option 2. Think a few weeks of pain and feeling uncomfortable was probably best for the long term.

Prior to Hospital appointment to get teeth out, had to go for Covid Test - God that was not nice, felt like the swab was hitting back of my head....Came back Negative.

3rd July 2020 Attend Ninewells, admitted into ward, prior to being taken to get all 7 teeth out at once. Usual tests taken first Blood Pressure, ECG, Blood. Side note after 3 separate Drs and Nurses checking my heart, they discovered i had a slight Heart Murmur - thought what else are they going to discover.

Thankfully never stopped getting the teeth out, was taken up, put to sleep, and woke up on move back to ward.  Given some pain killers etc, and allowed to recover for number of hours. DR came back to confirm ECG showed heart ok, but there was a Murmur, but nothing that worries him. Got out later that evening. First few days were ok, taking Paracetamol and Ibuprofen at varying times to manage niggling pains. Follow up Video call from Dental team on the 7th just to check all ok, and again on the 10th, i had to attend again on 14th just to get an additional small part of bone/tooth removed that was niggling my inner cheek, given mouthwash also to help recovery - All went well, although getting used to new layout of inner mouth will take its time, especially as no back teeth to use to chew or bite.

Next part of Pre Treatment was getting a Radiotherapy Mask made and a  PEG tube fitted - Again this is a back up, to support the main treatment.

9th July 2020 was attending Radiotherapy area to get Mask Moulded to face/neck, as the measurements are very precise to maximise benefit and minimise damage to healthy areas.  For fitting they weigh you and intimate no weight loss allowed, to ensure Mask remains tight fit, also body needs to recover so you need to putting energy back in. 

3 Nurses involved in procedure, lay you down and get you into correct position, then get you to hold onto handles attached to a base plate to pull on, to lower shoulders. Meanwhile they have warmed the plastic mesh ready to be placed over face neck and top of shoulders. They place on, then nurses start prodding all over face and neck, moulding to face etc. It was actually relaxing. After short space of time, taken down for CT scan with Mask and secure me and mask to table, so we do not move, they scan and mark points all over mask, again all just as treatment is very precise. (Some videos on You tube can be easily found). 

10th July Video call from Speech and Language therapist, i was given a range of exercises to do, which is designed to help swallowing techniques, as Radiotherapy will increase the risk of throat being to sore, so these will help in long term.

Few weeks rest to recover Mouth etc, before next Hospital appointment, apart from few calls from Dental team just following up to ensure all was healing well.

20th July 2020 - Into local GP for Bloods to be taken, prior to the operation on 22nd July

Arrive at Hospital on the 22nd July, for getting the PEG tube fitted, usual pre checks done prior to be taken down. Procedure is basically, the insert a small thread via Endoscopy, through to stomach, they also inflate stomach at same time, they basically got through the stomach, and right through muscles and skin. At the other side of the thread, they then feed the tube through the body by pulling through the thread at the stomach area, the tube is then left in situation, where base is in the stomach, and 80% of the tube is left outside the body, with a clamp and feeding screwed inlets. They then removed endoscopy etc, so nothing left sticking out of mouth. During main part of procedure, you do not remember much, TBH only thing I remember was burping loudly, with the air they pumped into the stomach.

I will be honest, this took a few weeks to calm down, do not underestimate how much your stomach muscles are affected, very uncomfortable getting in and out of bed. Each morning and night you have to flush through approx 60ml water to keep tube clear. I did use it a few times to pump in the laxatives, as I was given Oral Morphine, which can make you Constipated, Laxatives not the best so it was good practise to use the food tube. As a further bit of advice, try and get off Morphine as soon as possible, side effects coming off it are not very pleasant, this will be mentioned later on blog.

Main event of treatment planned to start 3rd August 2020, so few weeks recovery before treatment kicks off for real. 

Top pic is after PEG tube fitted