My Cancer Journey - Part 2 ...continued : The road is longer 🛣️😬

 "Starting to not feel too good now 😞"

If you've not read the first part to this second installment please see here 

Towards the end of week 2 I knew something was happening. Very dry mouth and the onset of nausea a little. 

I made some notes on my phone while in the "radiology holding bay":

9th of June - Dad's Birthday too: 

"Constant feeling of lump in throat, when I talk it can make me want to gag which is not the best. Not sure if it's the nausea but feeling teary too today, heard the band James on this morning with a acoustic version of "sit down" was beautiful and made me reminisce of times of old as a kid weirdly. 

Watched the last half of a film I started in hospital, a Danish film called "a beautiful life" (Netflix dubbed in English, the songs were English anyway (they do speak it better than us 🤣). End song just got me while waiting outside (room 2 that day), good film not Russ's usual sort to watch but as I've watched all of Netflix, I'm down to whatever new comes out.

Will see the nurse after my session, to see if anything can be done about the gag thing" 😫

June 13th:

"Bad day, worse so far. Not had a no.2 for 4 days and mouth so red and sore. Yesterday was placed back on morphine and every 2 hrs 5ml. still it don't work 100% , also got given Difflam mouth wash....I have so many mouth washes 😄, don't think the lack of no.2's is helping the way I feel either"


June 15th:

"Finally had movement 💩😊 more meds given too. Slow release morphine tablets and something to help the mucous situation 🤞 spent most of the night vomiting it up. Oh and now I have been give laxatives to counteract the morphine constipating effects...yey!"

The start of week 3 got prescribed Metoclopramide 10mg for sickness and told to use the Oral morphine again I had from the operation. Also on the menu Benzydamine hydrochloride spray to numb the mouth/throat and Gelclair mouth rinse to act as a fake saliva for when eating. The Gelclair tasted like pernod and when the sickness feeling got worse just reminded me of typsy nights out in the 90's and that just made me feel more sick 😂.

By the end of week 3, nausea was happening more often. Lots of phlegm 🤢🤣 which coughing up make you feel more sick. This was the "mucus" that was spoke of in that first oncologist meeting. When I say it was thick, I mean thick, imagine that green thick stuff you get at the end of a normal cold. Then quadruple the volume, thickness and stickiness and you might get somewhere near to what it was. 

This stuff had the tensile strength of Spiderman's web 🕸️. You could feel it stuck down in the throat and wind pipe. No matter how much you tried to cough it up it was just shift about in their. I felt for a few weeks like I was waking about with someone's finger down my throat permanently. 

First thing in the morning as I laid a sleep some shifted upward and I was able to release some of it then. Usually in the shower and it took the pressure of a Kärcher (other brands are available 😊) washer to wash it away 🤢. After a week or two it was waking me up in the night, I'd have to run to the toilet to try and get it out. Usually it made me wretch so it was not a nice wakeup call.

....more meds needed 😊. This time it was Carbocisteine, a watery syrup of sorts. Now I must say occasionally I still need this. The mucus has never been as bad after a few weeks aftter I finished my treatment but it still comes back a little from time to time. This syrup tastes almost like honey. It is actually quite nice, you only take 5ml but its a delight. However remember those "taste changes", well during the dark days of treatment it tasted like spit and in my head it was not mine so it tasted like someone else's 🤮...it was far from pleasant.

These side effects went on from week 2 until about 2 to 3 weeks after my 6 week treatment. Then these started to fade a little. 

It was about 4 weeks after my treatment finished I could fully appreciate a cup of coffee , I did miss it. Until that point it just tasted odd, most things did so I just drank water. Fizzy drinks were off the menu too. I don't drink them often but they felt like they were stinging my tongue, even a beer when I tried one a month after treatment.....so plain old water it was.

 

Weekly meds by week 3:
Gelclair, Flamigel, Paracetamol, Ibruprofen,Carbocistine, Oral morphine, Morphine tablets (behind oral), Odansetron (anti nausea), Lax to help me 💩 after all this🤣

Weight loss

I was advised in the beginning on average people lose 10kg (1st 8lbs approx) during treatment. At that time I thought this was a good thing. I had gained a little weight and I probably had more than 10kg to spare for this 😊.  I under estimated how rapidly those 10 kilos would drop off completely. I had not remembered that I lost a stone in weight since having my operation. Most of it was water weight and the fact I wasn't enjoying a couple of  beers or glass of wine during the week (and the takeaway that follows 😂). So my body had already gone into diet mode.

My first 2 weeks of radio therapy from a food point of view was pretty normal, just some things didn't taste the same so I wasn't having a second helping as I often did 🐖. Then after those weeks the weight started to fall off. I don't just mean a pound or so but I was starting to lose a pound a day. I could only stomach soup and even that was such a challenge. 

It didn't take long before my stomach shrank and the volume I could consume was so small. Half a bowl of soup then maybe 2 hours later the other half. I needed those calories, I tried to take my Scanidishakes & Fortisips but the consistency of anything other than watery soup 🍲, just made me feel sick. These shakes are not thick at all but it felt like I was trying to swallow dry rolled oats. Apart from the soups I could manage plain yoghurt but even then it was a struggle.

Remember when my dietician said "Russ you need around 3000 calories a day"? Yeah well I did as I frantically tried to eat more but failed. I had dropped enough weight to be at my "ideal weight" in less than 3 weeks of treatment. I knew the symptoms where cumulative ...so would only get worse. Between weeks 4 and 6 (just one month) I lost over 13.8kg (2 Stone) along with the first two weeks and post surgery I had lost nearly 4 stone (25kg) in weight...in about 3 months 🤯.

Don't get me wrong a good 2 stone of that maybe should have not been there in the first place 😊 in this case thankfully it was, my body was just eating away at itself. I calculated that I had been consuming on average between 600 - 800 calories a day....would explain a lot.  As you can imagine at this point I was very tired all the time and very gaunt and pale looking.

Mum's soup: By week 3 this is all I could stomach really and each of these tubs was one meal but I had to eat half at a time with a 30mins gap to avoid throwing up🤢. It was sweat potato, chicken & veg. It was nicer than it looked. I thought it looked like the food Robocop ate. So it was pretty much this and plain yoghurt for weeks.

I have included some images, don't worry they are not a gruesome as my operation images from part 1. I have included a couple of photos of what I was like before, this was a progress photos at the gym. Its not there to show off 😂 and until now very few people would have seen me in such a way but I include it to show the extremes of a few months from gym - to very slim 😲 (so don't judge me😂).

Sorry 🤣

Sorry again...

3rd of July - After my last day

5th of August - I'm so glad I was well enough to attend this wedding

16th of August - Pink pig farm with my son

6th of September - First day at nursery...for him not me 😉

Treatment complete 

I finished my radiotherapy 3rd of July 2023, I got to walk out of the holding bay one last time. Good bye and good luck to all my fellow "club members". I had noticed "the bell🔔 " on day 1 and at least every other day someone would ring it to mark the end of their treatment and the whole corridor would clap and cheer. 

Oh how I longed to ring that bell and to walk out knowing I could start my recovery. It was finally my time and I asked lovely gent on his day 1 if he could film it on my phone for me. I was tired, sick and felt no strength at all but I had been longing for this for what felt like a lifetime to ring. I rang the bell and went to the transport desk one last time to go home 😊.

I went home and despite the side effects that would still carry on getting worse for another few weeks I was told (In reality about a month to 5 weeks tbh). I decided it was time to tell people as you can only put off meeting up with people before they think you don't care about them anymore. I decided to do it on one go as not to have the conversation over and over again so I thought Facebook. It would be a good idea to post to let people know what had been happening and that if they see me around, there was a reason why I looked different.

Here's what I wrote:

"

Today marked a big day for me. I've been a little hidden away for a few months now. I posted a while back whilst I was having an op at Spire. It wasn't as routine as I made out, in fact it was a biopsy for a suspected tumour. A week or so after that I got my cancer diagnosis.

So within 2 weeks I was over at Castle Hill hospital having surgery in my throat to remove the tumour. The operation went well as can be expected and left me a little sore to say the least. The main work was done in my mouth but I had to have some lymph nodes removed which has left a visible scar to my neck.

It took a good month to recover but the treatment wasn't done. I had to wait 7 weeks after my operation before the radiotherapy would start. 6 weeks Monday - Friday at the hospital each day. 

Today was my 30th and my last session. I get to go home and rest now, I'm told the side effects may still worsen for the next week or so but hopefully at the 2 week mark they will start to get better.

I can't thank the staff enough over at Castle hill for all their support. It's been a rough time especially these last 4 weeks. Swallowing has been tough and all that know me, know I love my food. From operation until today I have lost 3st of weight but 2 were from the last 4-5 weeks which has been a massive drop. So if you see me about the answer is yeah I've lost a pound or two 😀.

Now I just want to concentrate on getting well again and hopefully in the next month return to work. A little normality is long overdue. I'll still be seeing my consultants and should have my first scan in a month to confirm no other treatment is needed. I'm writing this as I've kept it all quiet and only a few knew as I've been sheltered away. Saves me having to explain it over and over again by putting this here. 

Russ x 

"

I added a few pics including the scar and me in treatment and then the footage of myself ringing the bell.

Of course many people were shocked to say the least.

I still have not had my first MRI scan since 😞.

"Why did I not ask for the Rig"

Radiologically inserted jejunostomy (RIJ) tube aka Rig

To expand on a rig, it is a gastrostomy tube would be put directly into a stomach under x-ray guidance and under local anaesthetic. This would then help with getting nutrition (feeding) and also provide a way of administering medication. Even though I'm not medically trained and I would not attempt to do this myself, its a simple procedure.

I wish I could say I had a really good reason or on religious grounds to why I declined this, but I can not 🤦. It was purely vanity and misguided at that. You see folks I assumed it would leave a scare on my abdomen. This was a big no no in my crazy head, even though it was a simple procedure and the incision would be tiny, in my head it would not look great 😂😂😂😂😂.

Why I laugh at the notion now is simple, Russ (yes I'm speaking in 3rd Person to shame my stupidity)😊. Has never had a "Six Pack" nor never will and doubt even after the weight loss...still would not have one (90's Peter Andre Russ is not 😆). What makes this worse is that when it came to thinking about my "Space Pirate 🚀⚓" battle scare, that would be visible for all to see and probably 50x bigger if not more, I did not batter an eyelid about it...it makes no sense.

When I spoke to my Oncologist when he was discharging me from his care I said all this too him. My oncologist and trials nurse asked if in the beginning there was any confusion or concerns they had not addressed and I said no. It was all on me, you see if I could advise anyone else in the same circumstance I would tell them 100% do it. Don't think about it get one inserted, the insertion is small and the scare would pretty much vanish in a short time. 

You would be able to do exercise if you felt up to it. You would have a better chance of "feeling up to it" as you would have more nutrition in your body. If you had what I had then no need to worry about the mucus, nausea and the swallowing, you would be bypassing all this. This in turn I am positive about would have speeded up the healing process, and the weight loss would be less, so if you are in this situation....don't do a Russ 🤦.

"Remember the 'Late side effects' on the list?"

Nearly 3 months after my radiotherapy my side effects had seemed to have eased a little. My weight had plateaued but the main thing was I was not losing it anymore and not looking as grey. My appetite was about normal but I noticed taste changes. After a few days I had soreness in my mouth. It was hurting to swallow food and even liquid so I contacted my GP surgery. 

At this point I must make reference to the fact that since my operation, whenever I contacted the surgery, in the past I may have waited a few days for an appointment and at the most a week. Since my troubles I must say and its the same to this day. When ever I call, they have me in that day. If I register for an appointment or suggest what I'm talking about now, has come back on there online form. Within an hour I am contacted, either they want me in to check. If I insist I know "its come back" and I did not want to waste their precious time. When they could be seeing other patients as we know it will be just a repeat of the last prescription. 

They contact me straight away, I must have a red flag on my file or something. Its a small win/silver lining to having cancer I guess....oh and I have been given a medical exemption for not paying for prescriptions for the next 5 years 😊 (Thankfully, as there has been many of them made out for me and at £9.65...i must now be in the thousands now 😔).

Back to the soreness in my mouth, I go to see the GP and a swab is taken. A day later the doctor calls me and says its an infection. Not to worry a prescription has been made out for me to collect. Simple enough I thought "what is it" I ask, "oh just some oral thrush" she remarked. Oh how wonderful I thought, now every 2 - 3 days when I was having my radio treatment a nurse would check for this as it is very common. It due to the saliva change and is the same reason why babies get it, the pH balance in the mouth is off balance and its easy to develop. So a course of anti fungal meds where needed, to honest it took 3 lots as I had mistaken some of the symptoms as normal sore throat that I had had since radio. It cleared up nicely and taste buds resumed to normality. 

"Where is my shaver 🪒?"

I had lost hair at the radio site on my neck and face, this started to happen after week 4. I had to go from my stubbly look to clean shaven. I had a strange ovel like area that was smooth as a babies bottom 👶🍼 on my neck and left jawline. By November I notice some small amount of hairs growing back and by the looks of it...more white than my hair colour. This didn't concern me too much, I could never grow a full bodied beard anyway, it just looked like a cat had scratched it off 🧔😺.

"Dry mouth anyone? 🐫"

During the day its not that bad, I drink coffee all the time and probably too much. Still drink a lot of water too but its the night. From the 3rd week until September time. I would wake 3 to 4 times night like this guy below.

Teefs

It has gotten a little better now and if I only wake up once in the night, I class it as a good nights sleep 😴.

"Weight Loss!...again?"

I had manage to gain half a pound and that was a struggle. Normally I would look at some chips and boom there's another pound 🤣...2 weeks later even more weight had gone. I wasn't the 12st 2lbs I was when I finished my treatment. I was now 11st 12lbs...what's happening??...call the team!

I contacted the ENT specialist nurses as I was a little concerned. I advised them on what had happened. They asked about my diet and if I was still taking the Scanidishakes & Fortisps? "Well I try too" I explained, you see ladies and gents I had assumed now my appetite had come back and I had gained a little, that all was fine. I had enjoyed enjoying "Real Food" and thought I was doing fine.  I was mistaken, because I was starting to do more physically I was burning even more calories...on top of the many I was already STILL burning from treatment.

"Russ you should be consuming at least 3000 calories still"..."oh" that would explain it 😬. I'm aware that it takes approximately 3500 to gain a pond of weight and similarly that burnt to lose a pound. I roughly calculated I was around my 2000 - 2200 area...no wonder I was losing.

The nurse was not surprised and asked me a series of questions that I imagine was to assess if there was more to this (something sinister maybe). How was my appetite, bowel movements etc. This was all fine, she then advised me of the following, "Russ it could be like this for a while". She went on to tell me that radiotherapy patients metabolic rate stayed high for months, in some cases years. So I felt relieved and saw it as another silver lining...I could eat a lot more without the guilt ha ha. She did however advise me it would not be forever and to keep an eye on it. So I placed a repeat prescription for more shakes and made a sandwich 😊. She did give me a great tip too, with my Scandishakes, to put a large scoop of ice cream in there, this was a game changer, it was like a maccy dees milkshake then 🧋.

"Time for a break ☀️🏝️🍹"

At this point it was leading up towards the end of September. I was increasingly getting excited about my holiday I had booked with a mate of mine to Turkey for the beginning of October.  It had been a bit of a rough year to say the least and I had not been abroad since before covid, so as you can imagine I felt it was long overdue.

I may be far from beach body ready 👙 but I'll take really slim (for me) than beached whale 😁. I felt better about myself in terms of how I looked, I had gained almost a stone of weight back on, so not far to go to get to my ideal weight. I had colour back in my skin and knew now I could be in the sunlight, the tan would help also. It was so close to going away time I could already smell the sun cream 😊. 

About 7 days before I was due to fly out, I had notice a little swelling under my chin. More near the side where I had had my radiotherapy. It felt more like fluid than a firm lump so to speak....mmmm that's weird I thought, it was only slight but enough to notice. After 2 more days it was noticeably even worse. 

"Time to call the ENT specialist nurses...again"

Lymphoedema 

"How Wuude" - Jar Jar Binks

I contacted the ENT nurse again, I was a little panicked I wont lie. What was it? Is it bad? what can we do? I've only just got the all clear from my travel insurance company, can I still go? 

Side Note:

I want to make a little side note here, I was made aware that my travel insurance I got through my bank would not cover me while having treatment and shortly after. This was fine as I knew it was several months after my treatment I was to travel. However speaking in general with one of the many Macmillan nurses they made me aware that they could provide many companies that would still insure me. I just thought say they were even helpful with this aspect.

Back to the ENT nurse, I explained what was happening and she immediately said it was lymphedema. Was it sore to touch, any redness on the skin, did I feel feverish? No I said, well you'll be fine Russ. I could still go away, I just had to keep a look out for the symptoms she mentioned. She advised me if any of those things were to happen then it could be a sign it was an infection.

I wanted to know more about it and more importantly what can I take to take away "the bulge" from my chin/neck? Nothing she said,  Russ you may have this for a long time.  She was to email and post out some literature and massage techniques to help ease the issue. This would need to be done daily and correctly. I was told an appointment would be made with the Lymphoedema nurse for me to attend a one to one course lasting approximately 2 and a half hours. Great I said can I come this week? Sorry Russ no it would have to be after your holiday 😮😫.

So hears the thing, yes I had become very slim, the weight both muscle but more importantly the fat had gone. At this stage I had a killer jawline, to which I had not since I was about 16 years old 😊. But now though it was at peril, I'd lost so much weight I felt scrawny and given my height and personality I was more like Jar Jar Binks than Peter Andre as mentioned before, which was bad enough...but now...Now I felt like I looked more like the Gungan Council Head Leader - Boss Nass (sorry for the sci-fi references but I recon by now you know I am a star wars nerd) .

The literature came through the post and I tried to do the best I could to drain the fluid that returned on a daily basis (I was not doing it right at all and since my training, its much better). Towards the end of my holiday (and what an amazing place it was, I am to return there again this year in July). I noticed it was a little warm to touch and felt firmer. I returned home a couple of days later and I called my GP. I was advised by the nurse if any of these things developed then it could lead to infection...then cellulitis could occur. I knew a little about cellulitis, enough to know I didn't want it and especially on my neck and face.

As usual the GP invited me in that day and sure enough it was starting to show signs of infection. Time for some antibiotics, it cleared in a few days and the swelling went a little too but not all. To date this has happened about 3 times since now and each time....more antibiotics. Touch wood it feels like I have it under more control having seen the lymphoedema nurse and learning the techniques to massages it away 🤞.

So far and ongoing issues...

Lymphoedema nurse

I visited nurse who was part of a 2 staff team that ran the courses and where there as a point of contact for all things regarding this matter. The length of time it took to get my appointment scheduled for just shows that they are very busy and that I'm not on my own on this. There are a number of support groups for lymphoedema. You see radiotherapy affects the lymph nodes where ever you have it on the body but localised to that area.

In my case it was my neck (The Cervical Lymph Nodes), what happens is that the nodes stop working as efficiently or all together. There are hundreds of them in certain areas of the body, see image below.

They are vital to transport waste fluid around the body so of course a blockage or slow down of this means waste fluids just sat in the body, hence the susceptibility for infections. Remember from part 1? I know what your thinking it was such a long time ago and Russ you said a lot here😊, its ok I'll recap. I had a few nodes that showed up on the MRI scan that looked suspect and maybe had cancer cells. They were removed at the time of my operation (lets just say the space pirates where involved at this part 🚀⚓) . The nodes are arranged in branches and they had to take out 3 of them. In total I had 26 nodes removed from my body 😮. So this compounded with the radio treatment meant that my nodes on the left side of my neck had been left very challenged to say the least.

I do not think I have mentioned this so far in regards to the nodes they removed from my neck. Out of the 26 nodes taken and tested...only 1 tested positive for cancer. So it was a good job them pirates came along after all 🙏. 

I was advised that this is a chronic illness post treatment, meaning I have this for the rest of my life 😫. Some days will be worse than others and she was surprised  that it had taken this long to manifest itself. All is not lost however, yes 26 lymph nodes where removed but there are over 320 in the neck in total. 

One method is to wear compression clothing and in cases in other areas of the body that is simple. When I say simple I really mean discreet, in case of the calves being affected then just a compression stocking/sock is worn to help. In my case and I was offered it, it would be more of a balaclava (see below).

If you have seen me around recently or if not it will come as no surprise that I declined this option 🤣. I did ask what was its effectiveness and it was only a complimentary option and would not make a great deal to remedy the issue. 

So it was a no thanks from Russ 😊.

So my option is as follows:

• Daily specific stretching exercises
• General exercise
• Twice daily Manual Lymphatic Drainage Massage (MLD)

So far the MLD does make the big difference (this was why the course with the nurse was needed) but it does never seem to go completely. Some days the swelling is worse than others but if I can keep it down and it doesn't get infected that'll do for me. I will meet up with the Lymph nurse every 3 - 6 month for some years to come.

Weight Gain

Today I have been able to manage to get to 13st 3lbs, I seem to have plateaued at this for a few months now. I'm not losing anymore but gaining is hard a a few more pounds would be nice to get on track. I am hoping now I am able to return to the gym I will see some improvement and also in my fitness and strength. To give you an idea of what its like. After a weeks all inclusive holiday in Turkey at a 4 Star plus hotel, I had eaten my own body weight in both food and drink. My friend gained half a stone and I, well I managed a zero pound increase🤦🤣. 

I went a few weeks later for 4 nights to Krakow (I love this place) with my partner. Along with sight seeing we ate 3 course meals each day, some days more than once and drank plenty of cocktails. She returned 2 lbs heavier (and boy I have to hear about it most days and there is nothing on her 🤣...we've just joined a gym together 😊). I managed to gain a whole pound yes 1lb.....which I have since lost 🤦and here is the kicker, I lost it over xmas where all I did was eat 🤷‍♂️. 

It took from finishing my radiotherapy on the 3rd of July until October for me to be able to eat anything and everything and without having to consume 2 pints of water to masticate food down each time. 

The only thing that was off the menu was spicy food, this and the coffee draught hit me a lot. I love my spicy  food🌶️🌶️🌶️(I'm talking lots of chili), it has take until January 2024 for me to be able to tolerate a minute bit of chili. I could eat vindaloo's all day long before but after treatment a korma was hotter to me than a vindaloo ever was 😢. 

One time I tried a Chinese takeaway (was September time) it was a satay dish...my throat felt like it was closing up with any spice before this. I thought "satay is only mild"...wrong❌. This time I was in trouble. The sweats and feeling faint, my throat felt like I was being choked, I laugh about it now but at the time I thought I was in trouble. 

I must have eaten a full jar of honey and bottle of milk 🐝🍯🥛to try reverse the effects, my partner started to worry as I didn't look good. It took 30mins or so for this feeling to fade so I'm glad I can tolerate a little chili now...I have not dared to try that dish again since...not sure I am ready for that again😂

So my weight at least it seems stable and now time to regain my strength and fitness.

Special thanks to:

In my first part apart from Bert I had not named anyone. I'm not sure to be honest, maybe I did not want to single out few individuals. When a whole team or should I say army of medical staff have been crucial to my recovery and I did not get all the names. In actual fact I probably did not meet half of them in person and the ones I did, well its a lot of names to remember.

I would like to the following and I apologise if I have failed to mention anyone:

🧑‍⚕️ Mr Wong - Consultant - ENT Surgeon 

🧑‍⚕️ Dr Barreda -  Clinical Consultant - Oncology

👩‍🔬 Sarah - ENT Clinical Trials Nurse

👩‍🔬 Shirley Evans - Lymphoedema Clinical Nurse

👩‍⚕️Tina & the team of ENT Specialist nurses

👩‍⚕️ All the radiotherapy technicians 

🚕 Mike "Rossy" Ross & the rest of the Drive crew

🚑 Yorkshire ambulance Patient Transport Service & all the volunteers of PATS

🍴 Alice Hanning - Macmillan Specialist - Dietician

Thanks to all

Target Reached

Within 3 weeks of starting my fund raising page I have reached my initial fundraising goal already. Partly due to the fact of my first installment of this blog. I cannot express enough words of thanks to all the Macmillan staff and volunteers and no matter how much I raise, it wouldn't be enough to convey my gratitude. However I hope it goes some way and I will endeavor to raise even more now...if we could double or more my initial goal...that would be good 😉 Thanks to all that have donated, for all that have made it to the end of this...well done 😊and if you would like to support my efforts to raise for Macmillan, click here: JustGiving Page

If you are going through or will be going through this treatment or any cancer and would like to know more or just talk, please feel free to contact me on russ_kemp@hotmail.co.uk

Russ x