My Cancer Journey - Part 2 : The road is long 🛣️😬
Introduction
Before I begin this next part of my cancer journey if you have not read Part 1 already. I thought it would be either cathartic to me in some way and informative to others that maybe affected by what I had or just Cancer in general.
I often get asked about it so I put pen to paper as its been almost a year since this journey started. That and the fact if you are reading this you may have found it through my Macmillan fundraising page and I want to throw more info at you to convince you why you should part with your hard earned cash to support this wonderful charity😁
I will be honest and factual, I'm am aware this maybe hard form some to read and may be a trigger. At the end of the day I am talking about cancer here after all. I'll try to be my upbeat self but where there may be humor (this is how I deal with things...everyone has their own way) there will be at times emotional areas to cover. In my first installment it was safe to say there was probably more humor amongst the grim reality as I have received a lot of feedback about it. Sadly I am not sure I can offer the same in this installment.
In fact since writing and posting Part 1 last week, a very dear friend of mine got some devastating news and the worse has happened. His mother was diagnosed with cancer last year at a similar time to myself. She is doing ok at the moment and like me has a long road ahead. However having had that blow last year what seems even more of a cruel twist of fate. His father less than a couple of weeks ago was not feeling too well. Early last week he had to be taken via ambulance to A& E. The paramedics knew something was not right, but he was fine in himself only a week before.
My friend called me on Thursday evening with the news that his father now had cancer and it was "not good". He didn't have all the details as it was third hand from his father to his mother then to him. He was to go in the next morning to visit and to find out from the doctors. He then called later that day...not only was it confirmed it was bad but it was even worse. Stage 4 and it had advanced aggressively and spread over many vital organs. He had been told ]his dad may only be with us a couple of weeks at most. He then went to rally his family to get them all together (siblings were out of town), this was the Friday.
Saturday evening called me to say he was being transferred to Dove House Hospice, having visited there myself (not through my treatment but a few years back on a tour as I did some fundraising for them). I advised my friend that Dad would be in good hands and it was better for him not being in the infirmary now. I wanted to go and visit if this was ok with the family and would ask the next day. Unfortunately I woke up the next morning to a text message just before 8am "Morning ring you later just got to dove house he has passed mate" 😢.
Sorry to mention this and my heart goes out to all that have lost loved ones. I mention this to remind us all that this disease can be like this, I am thankful everyday that I'm still here and that hopefully my treatment is over now. I am still being supported by Macmillan Cancer support and will be for some time.
My friend however will need support from his friends and family but I'm sure if the family have not been advised already (I will be doing so if not when the time is right) that Macmillan will still be there for them, and will continue to do so even though the worst has happened. This is just one of the many areas of cancer support they are an invaluable resource and why I want to raise funds and awareness by undertaking this years Tough Mudder challenge to give something back 🙏.
Again sorry to burden you with some upsetting news and now back to my journey...
3 weeks since the op
As I said in part 1 by this time I was in not much pain and apart from the nasal regurgitation (Funny dripping nose 👃💧) I was getting on with things. My scar was starting to look less grim but it was clear to see the "Space Pirates 🚀⚓" had left a rather visible mark on me (still working on the detail of this incident 😊). My son, bless him just found it fascinating and from the moment I came home he often asked "let me see it". It had dawned on me that once I came back with my scar, being only 2 years old might be frightened by it or just upset by it.
His fascination was a relief, I had explained that Daddy had a booboo on his neck and that he had to be careful around it. Being a young child and a rather boisterous one as most are at times. We often wrestled on the sofa and he used daddy as a makeshift bouncy castle (Daddy was packing some extra timber after all 😮, it might as well be put to use I'm sure he thought 😁). He could not have been more gentle, I never once had to remind him to be careful.
He would ask if daddy's booboo was better now? Which was cute and I knew it was as he wanted to play like we used to do, equally his patience was heart breaking as I knew the worst may not be over yet and daddy may be a little more "out of action/off limits". Still he was gentle and would check on me most days by getting up close to look at my scar and ask if he could touch it.
He thought it was wonderful in fact when he felt it with the staples still in regardless of it looking a sight (See Part 1 for images). Then as the wound started to heal it did feel feel slightly different over the following weeks. Going from feeling tough/hard to then getting softer just kept his interest and patience 🥹.
Post Op checkup
"Open Wide!" 😄
3rd of May - Over I go to Castle Hill Hospital to see the surgeon for a follow up consultation...what next? My surgeon asked me to sit down so he could inspect his handy work 🔪. "You are healing well Russ" he said, a couple of junior doctors were in the room also and he proceeded to show them what had been done and that the neck incision was looking really good, even at this early stage 👍.
I moved from the inspection chair to near his desk were he had my file open on his computer. You will however need further treatment he announced. I had kind of prepared myself for this and at least I had options right? I would need to wait 7 weeks after operation before they could administer radiotherapy. So I would have to wait another 3 and a half weeks, so a little peace and quiet time...or so I thought.
He explained the reason was down to the fact he had got the tumor out however within part of the "free margin" were some vital blood vessels to the brain. He did not need to go into much more detail, it was clear that he could not damage those and what was happening next.
I would be passed on to oncology and did I have anymore questions he said? I could not think of anything as my head was a little overwhelmed, the treatment was not over yet, in fact little did I know... it had only just started.
I nearly exited the room and then it hit me...the question I often thought about from time to time since the operation. Should I ask it? Was it that important? Would I be wasting their precious time? 'Russ just ask the question!' I thought. "Oh I did have one question" I exclaimed ... What room was I operated in?".
Ladies and gents it does bring me great comfort to know that in fact it was in... "the robot room!" 😊 As explained in part 1 I knew it would not be Bert 🤖 but I like to think he was there in spirit.
Off I go to meet my Oncologist 👨⚕️
After my consultation with my surgeon I went over to oncology where I would met the Dr that would arrange and assess my next phase of treatment. I walked into his room and I was not surprised I would be there, after all there was only a 20% chance of the operation being the only treatment I would need 🤦.
He greeted me and asked if I knew why I was now with him, I said yes but or course he knew I would have lots of questions so he started off with what would be the next steps. A six week course of radiotherapy Monday - Friday (weekends I would get off), then every Monday a dose of chemotherapy to add to the mix 😲 .
He then went on to say that he was under the impression I wanted to take part in the clinical trial. The trials nurse was also in the room and at that point, asked me if I was still happy to proceed again and of course said I was.
My oncologist then said to the nurse are we able to find out which test group Russ would be in the trial. "Of course" she replied and went over to the computer where I could see a small form with a large button on, "wont take long" the oncologist advised...😬. He then went on to mention what the groups were. Now I may have not remembered all the combinations but from what I do remember here they are:
- Lower dose of radio with Chemo
- Lower dose of radio only
- Normal course as mentioned before as a benchmark for the other groups
- Higher dose of radio only
I was advised I could stop at any point and we would proceed as the normal course. If it was a low dose then it could be raised. However it would not be the same if it was the higher dose you see you only get one shot at radiotherapy.
The human body can only be allowed to take so much. This means that even if my curative treatment was successful and many years later I developed another form of cancer...radio would not be an option. Why you ask? Well here's the kicker...too much radiotherapy can cause cancer...talk about fight fire with fire 🔥🔥🔥.
Luckily there are other cancer treatments like Chemotherapy which you can have multiple courses of. I like many others may have been under the impression that chemo would be a hard path to endure but if it was the only option then its better than no option at all 😧.
"And the test group says...😬"
The test group was generated...Higher dose of radio only ☢️☢️☢️
Initially I was relieved to learn that I had avoided chemotherapy but the old brain box and its worrying ways ask me the question "but what if that's not enough Russ?". I don't know I thought "ask the doc not me" realising the internal conflict I thought it would be easier to ask the professionals and let my concerns be known 🤦.
"What if the radiotherapy was not enough?" the oncologist obviously knew the question was coming. He explained then they would then take other measures, reminding me I can stop the trial at any time. They would be monitoring me with blood tests all the way through treatment . The radio machines take a quick CT scan each day also, this means that they can closely monitor how my body is responding to the treatment.
"look Russ, I can't write this down as there are no certainties but after your course of radiotherapy I am not expecting to see you back here!". I didn't really know how to take this information, how could he know? But what if it doesn't get it all? I asked, "then we go onto your next option" he volunteered. "Ok so I would then need chemo?"..."No I would not treat you with chemo"...wait! what! hold up just a minute? 🤔 "You see Russ I would treat you first with immunotherapy", "errrrrrrr immuno what now? 😬"
Let me now explain what I had never heard of before. Immunotherapy is the treatment of disease by activating or suppressing the immune system. Immunotherapies designed to elicit or amplify an immune response are classified as activation immunotherapies, while immunotherapies that reduce or suppress are classified as suppression immunotherapies.
So basically ladies and gents I would be back to being wolverine again 😁. Ok I thought so we now have another option, more options than I thought were available, this is great.....what was that Mr. Brain? "So what if immunotherapy did not work?" I had blurted it out without consciously knowing it at first. My oncologist just smiled at me and explained we would then move on to chemo....and as many courses as needed (answering my obvious next question 😊).
He then was quick to say while placing his hand on my shoulder "But Russ I am not expecting to see you for any further treatment after the radiotherapy. Again I cannot write this down but we are working on a microscopic level with you to cover the free margin area". I said ok then talk to me about side effects of radiotherapy. I felt even more positive at this stage as now I had another option to fight this 💪.
He then explained I would be scheduled into see a dentist, why the dentist?...I'll get to this soon enough but initially I thought it was odd.
The side effects I will list here:
Hair loss
Lymphoedema
Difficulty Swallowing
Taste Changes
Hypothyroidism
Tiredness
Sore mouth and throat
Sore Skin (think sun burn ☀️)
Bad breath (not again 🤦)
Difficulty opening mouth
Late side effects (I did not remember this one, I'll come back to it)
Stiff joints and muscles
Dry mouth
Feeling Sick
Sticky Mucus
Hoarse Voice
Hearing loss
Damage to the jawbone
Weight loss
Not much here then I thought 😂. Dry mouth, trouble swallowing were very common. Radiotherapy side effects are culminative and as before not guaranteed to get them all. Weight loss...quite a bit....maybe 10kg I was advised would most likely happen and I would feel very tired.
The culminative effect would mean I would not notice anything changes at first and maybe take a couple of weeks to be noticed. I had assumed these kind of side effects were due to chemo when thinking of cancer treatment before now. Well at least I know now what to expect.
"Oh did I want a Rig?"
Pronounced "Rig" but the acronym is RIJ I found out. He advised that it was a just a small tube inserted into the stomach...I will come back to this topic later but at that point I declined the offer ew...🤢
I remember speaking to my parents after my appointment to explain what was going to happen next. I must have been upbeat about it and maybe a little..."it'll be fine, I can handle it"...as if it was maybe easy 🤦. In my head I understood this to be the case as I was at least at the moment avoiding chemo right? My father seemed a little more cautious about it all, stupidly I did not take heed in his caution.
I know what your thinking folks "They are your parents Russ, your dad is just worried about you as a parent should be". Well yes ✅, I would agree and if I did not have this one piece of info you don't just yet.
What I should have done is maybe listened a little carefully or asked more questions to prepare me a little more. You see before my father retired several years ago now he was a technician, a technician at a hospital, a Medical Physics Technician to be exact.
Yes that's right he fixed the very machines or at least similar to (he'd retired over 15 years earlier) that would be saving my life. For over 21 years he worked there and of course had dealings with unfortunately thousands of patients. He knew the severity of the side effects only too well and that my "it'll be fine/easy" attitude may be a little misguided. I was yet to find out what would really happen and boy I did underestimate it 😬.
Avoiding a fresh tattoo & "The mask"
8th of May I am back at Castle Hill - Queens Center for the mask fitting and marking up (temp tattoos avoided). I did not know but for those that have radiotherapy elsewhere other than the ENT area, often get tattooed. Not as a badge of honor but actually as part of the treatment. This is used as a guide to make sure the patient is perfectly lined up in the machine each time, so a few dots would be tattooed on their skin 😬.
In my case this was avoided by the fact I would need to wear a mask, this would be to keep my head in place and perfectly still each time I was having my treatment. The guide dots would be made on the mask so all I would need to do is lay there 😊.
Firstly we would need to make the mask. The mask starts off flat and is warmed up in hot water. It is allowed to cool a little before being fitted over the face....sounds simple right ...sounds scalding😬. In actual fact it was straight forward, I lay down and 3 people stood around me while I lay on the moving table that goes into the radiotherapy machine. Then they place it over my head and shoulders and press down on the frame to lock it into the table.
As it is locked in place they pressed the surrounding mesh tight against my head, neck and shoulders to make sure its a snug fit and that I can not move when wearing it. After 10mins it had cooled enough for them to remove again. To be honest it was painless and more like a strange facial massage if anything.
Below is a picture of a similar mask before molding. I couldn't find the same as mine but you'll get the idea and then next to it a picture of my mask molded that day. I still have it in my garage to this day. Yes they let you take it home, first thing I asked them when it was made was could I keep it to show one day to my son 😀. What else I was going to do with it I don't know but it's still in there....I could not take it until I was finished of course. So the mask was fitted and ready for my treatment to start....but first, something about a dentist has been mentioned.
"Open Wide...again!" 😄
9th of May back to Castle Hill - Maxillofacial Dept, first things first, lets have an x-ray. Once everyone dashed out the room as they do with a dental x ray. I thought I hope they don't do this everyday for my radio therapy 😂,it is kinda like a high powered x ray machine (yes I know there's more to it than that 😁). I always find it funny and of course I know the reason why they don't hang around to be exposed to too much x ray or they would be needing cancer treatment themselves but it does make me chuckle.
It will come to no surprise that this nerd did for a moment think well what if they hit the wrong setting, somehow it was switched from "X" to Gamma rays. Would I follow in Bruce Banners footsteps, first thing I would do each time after my dose would check my skin hue...is it going green? Then I thought, shut up brain...it ain't gunna happen 🤦😂lets just get on with this. In hindsight the reality wasn't far from this, well I did not gain any muscle mass. In fact quite the opposite and just as dramatic but I'll come to this. The similarity would be that, and the other geeks out there would know that the original Hulk was grey...this was pretty much the hue of my skin by the end 🥺.
"Look at what you've won! 😬"
"Here have free toothpaste and mouthwash for life" and the Dentist handed over a prescription that would be for the rest of my life for High Fluoride Toothpaste and Mouthwash. This is great I thought 👍(being a true Yorkshireman I appreciated the cost savings 😉).
I would need to brush 3 times minimum a day while having radio treatment. Reason was due to the saliva production slowing or stopping totally. This would mean that my pH balance in my mouth would not be balanced. This then means the dryness of my mouth could cause rapid dental decay and I would be susceptible to infections...oh and oral thrush is common too...how lovely I thought 🤦,
I was advised I would be getting a teeth impression made and a gum shield would be made to use each night also. I would need to sit for about 15 mins with this on (top and bottom rows of teeth) with said tooth paste squished in together ... after brushing that is and no rinsing after 🪥.
"But wait there is more...😫"
So it was teeth inspection time, the dentist did the usual talking in "teef" code 😊 "LI1, good, Lower LM2" this, that and the other. Russ we need to remove a tooth..."wait what? 😬", "I don't have tooth ache" .
Osteoradionecrosis
"This is why you need the tooth out 🦷" I was advised. I have taken this next bit from the NHS website:
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"Radiotherapy reduces the blood supply to your jaw bone and therefore the ability of the bone to heal. This means, if you need a tooth removing after radiotherapy, there is a chance that the bone associated with the tooth could die, causing a painful, long-standing condition called Osteoradionecrosis (ORN)"
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So basically remember the "necrotic tissue 💀" in Part 1? Well this is basically the same. It would need to be cut out and then a bone graft would be needed to fix the jawbone. Its an extreme tooth removal option and so I had a question. "Ok if I do not decide to let you take the tooth and its fine great....but I know at some point age will catch up on me and I will need another at some point removing...so what then?".
The dentist was very matter of fact and said that the tooth will need removing either in the next few weeks/months or year but soon it will. It may seem fine now but what will have to happen anytime you need one removing and for the rest of your life. Would be to have the removal done and then you would need daily visits to a hyperbaric chamber for a several hours per day and for a number of weeks to try and stop the ORN happening.
So I was faced with the possibility of spending hours at the queens center each day Mon - Fri to receive my radio treatment. Then off to the Hyperbaric chamber at Willerby for several more hours per day to sort the tooth, the tooth that I could and would by then wished I had out. Of course it was a no brainer "when can you pull it out" I asked?, "we'll see you in 2 days" was her reply 😂.
So information overload again, I was well informed so on with the molding gel and "Russ bite down on this!" 👄😆
So this explains all the fuss about the teeth.
"Out ya come 🦷"
11th of May back I went to Caste Hill to see the hygienist for a spit and polish and a fluoride treatment to my teeth. I was told I would go back in three months for another session of the same to check and limit the chances of decay due to the up and coming saliva issue they knew I was going to have....my teeth (what would be left)have never been so l clean. My next appointment was about 90mins later to have the extraction.
I went from the Maxillofacial building to another across to the main building. I had a bit of time to kill so as I was prepared I watched Netflix on my phone (earphones in of course 🎧). I had been sat for a little while and I noticed that the waiting room I was in had emptied, it seemed strange as it was a large waiting room. Even the receptionist was not present, not to worry I am sure I'm in the correct one. I took the chance to stretch my legs a little and started to pace around the room (I explained I can be a bit of a fidget bum in Part 1... see first MRI scan section 😉 if you have not read that yet).
I was reading the notices on the wall (as you do) lots of course on oral hygiene, some on gum disease and the old gingivitis as you can imagine. However a large poster was on the wall that did not seem to fit in, it was by far the largest too. I could see it from a distance (large waiting room...not bad eyesight 😊) so I walked over to it, call it curiosity I don't really know why. It was a chart on types of skin cancer.
It just seemed a little out of place but to be honest looking at rotten gums and teeth was starting to lose its appeal so a change of morbid scenery was welcome. I studied the charts and pictures and then a nurse passed through the empty waiting room and said hello. Right it was my time and I was in the right place.
The procedure did not take long, with a few quick "Short Sharp Scratches 💉" I was numb and ready for the dentist to do their bidding. Surprisingly it didn't take much to pop it out, considering it was a larger molar at the back, very little blood. Maybe the gnasher was not far from being done and I narrowly escaped the Hyperbaric chamber visits after all...who knows.
I did not start my radiotherapy for another 5 days so I went home to unwind and wonder what the radio would be like. A close friend called me to check in only a day or two after the extraction. We got chatting about what was going to happen next and my numerous visits to the hospital that week. I remember waffling on (as I do 😊) and saying, enough about me what about you. "Aye I'm crackin' on mate" (I wont try and convey the accent to conceal his identity, and I wont say his name so for now I will call him CJ 😉).
He told me he had been meaning to go to the Drs for a couple of weeks but due work commitments he had postponed it. I asked what about and he said that he'd notice a mole on his inner thigh that was "a bit weird and didn't look too canny like". I asked to see it so he send over a picture of said "issue". Now he failed at two things here, firstly failed to tell me how high it was up his thigh and secondly, failed to conceal enough of "the boys" for my liking 😂.
So like a true friend I over looked that and did not make reference to a well deserved manscaping he possibly may have needed 🤦😄. There it was though.....boom...I've seen this before I though....why? Then it hit me, the waiting room, I saw something almost identical. I had to tell him and then remind him of the charts and stats I'd taken notice of on how treatable it was...if it was to be his "little passenger".
About a week after it was confirmed positive and removed there and then. Job done, my fidgety legs came into good use that day and all is fine with CJ. The scar is a little boring to be honest and I can safely say mine is bigger than his......oh and if you are wondering...I did appreciate the level of manscaping he had done for the next photoshoot of "the boys 😂" .
You maybe thinking Russ you've gone off on a tangent, those that know me would expect nothing less. I added this antidote as its true and happened as it did but to remind us all that 1 in 2 people will suffer from cancer in their lifetime. Some minor and some more devastating. The impact it has is enormous to those suffering and family & friends. This is again why I wanted to raise money for Macmillan Cancer Support to aid there vital work, the research and their support services 🙏.
"Taxi! 🚕"
I was offered transport for my radiotherapy treatment so I opted to take it. I was told by many after a couple of weeks or so I would be feeling lethargic and or nauseous and it wasn't probably a good idea to be driving like this. Add that to the Yorkshireman in me having paid a lot for parking at the hospital already, it was the best option 👍.
Each day I would be picked up from around 11:00 - 12:30, this would be either by a local taxi company (Drive) or an Ambulance transport vehicle "great that's going to interest the neighbors each day is an ambulance come to the house" I thought. My scheduled appointments were all about 13:00, some 13:05 or 13:10 but usually about 13:00. This means if I am picked up at 11am that's a bit of a wait....little did I know what it was really going to be like 😬.
After treatment I would report to the main reception at the queens center each and say I was ready to go home. They would then arrange the transport back, this was needed to be done each day as there can be delays due to machine break downs etc. Then there could be about a 40 minutes wait for the return transport...again I wasn't to know what would actually happen.
I will summaries my waiting times in another section as this is not down to the lovely folks doing the transporting. It is all arranged by a central head office who I'm sure have a massive task to provide all this to everyone ⭐ so I would not want for a minute to look ungrateful, however in the beginning I was under the impression the procedure would take a few minutes and my appointment times where set...all 30 of them.
What I would like to do here is make note of the service I received when the transport arrived to collect me either to or from the hospital. Each day I didn't know if it was going to be an ambulance transport to which I called the "The Sunshine Bus🚌" now please don't think I am using this term derogatory nor do I wish to sound out of place but in my mind it sounded more positive and jovial. Again having an ambulance turn up at your house, and you know its because you are receiving life saving treatment each day just felt a bit grim...the sunshine bus just made it seem happier to me.
So it was "the bus" or a Taxi 🚕, now I realised after a week, if "the bus" had not arrived by 12:15 then it would be a taxi and I was right on most occasions. Either method they would call me about 10mins before to say they were on their way to me. Some days there was other passengers. Usually just 1 other and maybe their partner, again either method. I got familiar with a few regulars but as we all started our treatment at different dates and some had shorter courses then people the changed.
My fellow "Radio Club members" came from far and wide to the queens center. I am only about 10 minutes away but some of these came from Grimsby, Scunthorpe and even further a field, some days even Scarborough...and I thought my day was long 🤦. Quite a lot of times it was just little old me in the transport.
I have to say whether it was "the bus" or a taxi I couldn't have been treated any better. With the Ambulance transport you would maybe expect they have been trained and know only too well what people are going through with their treatments but so too were the taxi drivers. Each taxi driver had training for this, some I had told me they started doing it as they had had their battles with cancer and wanted to give back.....yes some were even volunteers 👏
I had so many interactions with different drivers and it truly made the days a little bit nicer. As the weeks went on each day got harder which I will get too this, but I have to give them credit. I wish I could remember them all but I remember Sarah and Rachel from the ambulance crew 🚑 , we travelled together a lot and the way they dealt with me and seeing them treat other (usually elderly "club members") was a pleasure to see.
Big shout out to one of my "Drive" taxi crew 🚕 and there was others don't get me wrong but he did stand out from the crowd...Rossy .I know his name really and its partly here but after spending 5mins with him you'd be calling him Rossy too and no doubt be laughing away...even if was on your 26th day and feeling nauseous and drained beyond anything else since day 10 ..which happened. For the whole journey in I got to forget for about 25mins what it was I was doing and where I was going that day. He knew from only a couple of weeks before the amount of weight I'd lost but just treated me like one of the boys, it felt like I'd know him for years. I said before the journey was only 10mins from my house, you see we arrived early and we just chatted and laughed for another 10mins or so, sat outside the queens center...he didn't have to do that, but did.
I would love to see him one day or the odd time I do venture into Hull on a "night out" you know "out out!" see him and thank him. He probably wouldn't recognise me now as I think he would be like he was with anyone and unfortunately would have transported so many other "club members" since he transported me.
"1 down, 29 more to go..."
30th of May, the day after the spring bank holiday I had my first blast. I went down to the radiology department at the queens center. Checked in at the welcome desk and I was advised that I was on machine No.4. I came equipped with drink and some snacks as I was warned there maybe a wait. I was handed over my first (of many prescription to come but I did not know this at this point).
First on the menu was a large tube of Flamigel and a box of Caphosol. The gel was to be applied after each treatment and as a when needed when the effects of the radio was felt on my skin (a little like sun cream but without the smell of holiday 😎). The caphosol was a 2 part clear liquid you mixed together and then rinsed your mouth out with twice a daily. It was more like salt water than a chemical taste.
The clinical trials nurse came to meet me and wanted my blood 🧛♂️, so off to a room we went and "short sharp scratch" 💉🩸time. I would be needed to give blood for the trial each week , I'm not squeamish about it so it was no bother. I was then weighed before I was to go and sit in the waiting area outside room 4. Along with my snacks I had my tablet and Netflix too keep me company.
I could see on the wall a large screen, it presented a large spreadsheet style form 📺. It listed many names. Each page was another spreadsheet for that particular machine. Room/machine 3 was popular that day I thought, then after a little while I could hear people talking, it was because room 5 was out of action that day.
I could just picture my father trying to fix 🔧 the machine and the pressure he had to get it back online to process the "Radio club members" that day so their waiting times improved. Needless to say I had a whole new level of appreciation for what he did💖.
Machine no.4 was on the screen. I was so far down the list and it was already 13:00 😫. Thankfully the wifi signal was good and free so head down into Netflix and I just occasionally looked up to see if my name had moved up at all. You see the room are all in the same corridor so lots of people passed by some came after you but left before. Then you had staff walking past a lot so I just got my head into a film.
"Finally my go"
It was time, I walked into room 4 down a smaller corridor where it broke out into a small open office. Here a few technicians were sat partitioned away from the "Business End" of the machine, that was around the wall/corner. I noticed a small sign the infamous radiation sign ☢️ indicating it was a lead lined wall and a thick one at that.....mmm maybe they wont be dashing off after all like at the dentists 😂.
I was welcomed into the area by a technician and asked to remove my top. I was instructed on what would happen when I had my mask fitting so it felt familiar. Off with the top and lay down on the table. I was told I would be treated by a new Halcyon machine (see picture below), apparently better than there other machines but they only had two and one had broken down that day. Hence the wait, I soon learned that at some point all the machines would intermittently have break downs through out my whole treatment so "the wait" was the norm.
I laid down and then was asked what was my name, date of birth and then my address. Obviously this was to make sure, given the number of people they had to process a day that they got the right person each time. The machines where programmed to target each person differently and being even a micrometer out may have made the treatment pointless and as I said before there is no second go at this.
Once confirmed the mask was quickly and few clicks I was immobile from the shoulders upwards. I could still breath of course and talk almost audibly like I had a hand over my mouth. Enough to reply when they asked if I was ok and ready I could mumble a "yeah" and give them the thumbs up and in I went.
This is me about to go in that very first time.
I know you may be thinking..."what did it feel like Russ? 🤔" in answer I could not feel a thing. There was not a great deal of noise from the machine either. My mind just wondered as it often does and yes I was thinking of and seriously, would there be the odd stray gamma ray coming off. I was having a higher dose, the next type of wave on the spectrum from x ray is Gamma after all 😂.
A scene from the original Superman 2 film came into my head where a lady turned into a robot where the AI machine took over (that scene did scare a lot of folks but I always thought it was funny as a young child). The scene had the robo-lady (in reality just a actress with a bad wig and tin foil on her 😂😂😂) shoot out a laser from her/its eyes and superman deflected it.
I then remembered a time were I used to wear a superman costume...don't worry folks I was about 5 or 6 years old and not in my 40's as I am now, its one of my early memories I have. I fell down the stairs and my mother came dashing over and was so worried I'd hurt myself.
These where wooden stairs and no carpet so each step was a bang on the way down. I just sobbed to myself and in broken sobs, sniffles as a child does when they are upset and tries to talk while crying said this..."I wish I wore my superman outfit, that would'nt have happened 🦸♂️". I thought how did my mother keep composed and maintained a level of worry on her face when I came out with that, she must have known by that point I was fine and the ridiculous notion that a cape would have saved me from falling must have made her want to laugh at me 🤣.
I know it sounds like another "Russ tangent" but this was what I was thinking, I wrote it down afterwards as I just wanted to laugh, call mum and then go home and watch Superman 2.
After my first session I left the room and said see you tomorrow 😊. I checked in at the main reception at the queens center and transport was arranged. I sat down in the waiting area and turned on Netflix again (no it was not listed there, I would have to rent it elsewhere 😫). I thought would it start to hurt during treatment as the days went on, in hindsight now I can say no...not the actual time in the machine....the side effects...well this was something else.
I waited 40 minutes as expected and it was a taxi home.
All in all the day took 3 hours 50 minutes.
Total time in machine no.4 = 4 minutes 😲
I would find out that on average my day would be 3.5 hours to 4hrs long each day. A few were done in 2 hours but only a few and some a little longer than average. The longest day recorded was 6 hours and 20 minutes...for a 4min treatment 😮. In all honesty it wasn't as bad as it sounds. What else was I going to be doing anyway. I was only going home to get some rest and feel the side effects worsen.
It's hard to explain the comradery that was formed between the patients, I felt it instantly. We would all chat and then some days, those that felt it worse maybe be quiet but we all were going through the same thing so were there for each other. We'd watch the list on the screen go down and if someone went to toilet or had to see a nurse then we'd let the radiologists know if they were called.
Sometimes I or someone else may have had our head down watching a movie. If anyone noticed they were up next they would wave over to get their attention to let them know that their time was soon. New people would come and go but it was always the same comradery, it was a nice thing in a not nice situation.
Dietician time
31st of May - Day 2. I go to see the dietician. Here I got advised that I would during my treatment would maybe start to feel nauseous and not feel like eating. This we need to prepare for as I would need to consume around 3000 calories to sustain myself.
Reasons are that with the dry mouth that happens swallowing is hard. So soups are a good thing but don't often contain anywhere near enough calories I would need. I was then asked if I had; had a RIG inserted, it was a no from me and I could see in her eyes that she thought it was a shame 🤔.
Cheese would be my best friend, I could put it in most things and a good source of calories in soup, plus it just melts in. Next butter, I asked straight away, all this sounds high in fat.
She smiled straight away and said you need to get the calories and not to concern myself for the next 6 weeks how I got them....just get them 😋.
She went on to say that my taste buds would change and somethings I used to like may taste odd and not to worry this was normal. Next on the agenda was meal replacers and protein shakes. I was handed a sack full and I'm not kidding, "try these Russ, see which you like and can stomach and I can always get you more". The dietician then said she would then write a repeat prescription for me to take to my GP. I did take it for granted at this point as I always had a good appetite and didn't think it would be an issue.
I was weighed for her records and informed that when (not if) it becomes harder to swallow to cut to smaller biter sizes like you would for a baby. Try to get as much solids before going to liquid. Keep a glass of water next to me whenever eating as the dryness was going to be a big issue. I left her office and had an appointment to see her again in a couple of weeks but to contact her if I had any concerns or any questions in the meantime. I then had my 2nd treatment and then off home it was.
I didn't take a photo of the sack of shakes but I include a repeat prescription photo below.
88 doses in total, it was recommended that when it got hard to consume solids the 2 Scandishakes a day and 2 Fortisips a day to be had between my normal (what ever that would be eating) meal so only approximately 22 days worth here believe it or not.
"Starting to not feel too good now 😞"
To be continued...
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| Feeling zapped |
I decided to split this blog as it was getting a little long to say the least, please see Part 2 Continued
