As I left the hospital with a promise to the doctor I would return in 1 hour my mind was spinning, as I exited the hospital doors I couldn’t even remember where I had parked the car, finally I found it and set off on the 10 minute journey home frantically trying to work out how I was going to break the news.
As I walked through the front door, 3 hours later than expected, I heard my wife shout from the living room “finally, you’ve been ages, at least you’re not dying ha ha”. How little she knew!
There was no time to beat around the bush and definitely no easy way to say the next sentence out of my mouth, so I just started with the words, “I love you princess more than anything in the world but I have some terrible news to tell you, I have cancer that has spread and the doctors say the outlook is not good, I don’t know anything else and I only have a few minutes before I need to go back to the hospital as I need an emergency CT scan”
The look on her face haunts me to this day; it was like she was waiting for the punch line to a sick joke, but of course there was no punch line coming. The look turned almost immediately into blind panic face, followed by what? Why? it can’t be, are you sure etc etc etc and then a noise, a cry, a scream, I’m not sure what it was but it was some sort of primal noise only a soul in deep pain and panic can muster. As this was happening the phone was ringing, the consultant saying I need to be back at the hospital in 15minutes. Walking out of the house after dropping the biggest bombshell ever felt like the cruellest thing I’ve ever had to do.
After several hours it was confirmed they could see a large kidney tumour, another tumour on the pleural sack and at least 12 small tumours across both lungs, I was told they could only offer surgery to remove the kidney unfortunately (a robotic Nephrectomy) and it would need to be done as soon as a slot with the surgeon could be found, probably in the next week or two.
The only question I asked and the only one that seemed of any importance was, “can I survive this”, the doctor replied in a way I suppose they have to avoid any kind of misunderstanding, he very directly said “if it was just one thing or maybe even two and we found them early we would have a good chance, but taking everything altogether I won’t beat around the bush, you are in a world of trouble but we will do all we.
For now you can go home and try not to worry we will know more after the operation and the tumour has been sent off to find out exactly what kind of cancer it is.
Over the next week my wife and I went from endless conversations about cancer and treatments, to sitting in silence for hours staring into space. My poor wife, the love of my life was broken, every time I glanced at her she was crying, or hiding in the bedroom to cry in an attempt to shield me in some way, she was panicking, sad and devastated and it was all my doing, the guilt I felt was overwhelming.
I’m sure it is easier being the person with the diagnosis, than a helpless loved one because to this point I hadn’t shed a tear or felt emotional about my own situation, in my mind I was very matter of fact, I have terminal cancer and I am not going to curl up in a corner like a victim, if I’m going down I’m going down swinging or at least with my rucksack on.
All that bravado in my head changed the day after the diagnosis when it was my job, as a man, as a father to tell the kids the worst news that Dad isn’t superman. I can’t explain the feeling or put any sense to it, but when it came to the words coming out of my mouth I could barely look them in the eye, the feeling of shame ripped my very heart out of my chest, how could I have let them down so badly, I am meant to be the strong one, the family rock, Dad fixes everything!
I could write for ever about how this news affected everyone, my wife, my children, grandchildren, my parents, my sisters, every member of the whole family but I hope for this to be a simple explanation of the personal journey that could possibly help someone else in the same situation.
The appointment finally came through for an operation to remove the offending Kidney and during the pre op appointment things started to get real, very quickly, the consultant explained the operation and then said “of course you will need to stop working, as you will be in and out of hospital more for the next year than you will be at home”, I said when will I need to stop work and for how long, he just replied “stop working today, and I’m sorry you won’t be going back to work”
For context of how our lives were about to change, for the last 20 years I had run a fairly successful IT businesses that looked after critical IT infrastructure that needed 24hr 365 days a year support, that was now going to be impossible and I only had 1 week to find someone to take over the running and understanding of a lot of contracts for multi million pound businesses and to top it off I had also just bought a second property to renovate with the plan of doing a simple property flip as it was something I’d always fancied having a go at.
Eventually after lots of phone calls and meetings with business in a similar field and sounding like some sort of lunatic, I found someone to take over the contracts I could no longer fulfil with immediate effect. That felt strange and relieving all at the same time, I had just given away tens of thousands of pounds worth of my income for free but money just didn’t seem important right now, more strange was id just given away everything id spent 20 years sweating for. Wow how can your entire existence change so much in a week, I was trying to process as I drove home as a newly unemployed member of society.
The Operation
My wife packed all my stuff in a holdall for me because I’m a typical bloke and don’t have the intelligence to do it myself, apparently you can’t go to hospital with things like used pyjamas and used socks, what would the nurses think of Claire if she had sent me with anything other than brand new everything, the mind of a woman will always have me baffled.
I was taken straight in 1st thing in the morning to a side changing room, where I met all the medical team that were going to be part of the operating team, the process of events was conveyed to me and then they left telling me they would make a start in the next 15 minutes. I was instructed by a nurse to strip and put on the hospital gown with no back in it, I was then taken down a corridor to the operating room, just as I was about to enter I noticed to my left a small room with the door open, inside I could see a coffee table and all the surgical team sat around it having a brew and chatting like a bunch of builders waiting to put up an extension. My surgeon saw me looking, smiled at me and said, right are you ready for us.
At this point I just wanted to get cracking, I was sat on the side of an operating bed as naked as nature intended, with my head almost between my knees as someone behind me was sticking a needle in to my spine to perform a spinal block procedure to ease pain later on, any sort of dignity I had was still outside in the changing room and clearly hadn’t bothered to follow me in, but I didn’t have time to dwell as someone else said I’m going to pop this cannula in your hand and administer the anaesthetic is that ok.
A few seconds later he said can you count with me to three, I have no idea what number I got to, that was the end of my input.
Now I could go into detail all the events of that day, but this is my story, my version of events so I can only tell the story from my perspective.
At some point I vaguely remember a nurse trying to stick a cardboard sick bowl under my chin and saying come on now wake up, it’s all over but all I could do was throw up again and again and again. It appears that I am allergic to anaesthetic, and my blood pressure was dropping, apparently the way to fix this is by drinking gallons of water, which the nurse was trying to tip into my mouth whilst firstly, I was stuck in no man’s land seemingly unable to wake properly from the anaesthetic and secondly being violently sick and the more water you tip in the more there is to come straight back out. This horrendous cycle went on for a good couple of hours even when back on the ward.
The next battle was the heat, my body was like a roaring furnace from top to toe, but according to the thermometer they kept sticking in my ear I was dangerously cold, so the nurses were burying me under blanket after blanket and any movement they were back to tuck me in again.
I had no idea of time or even what day it was when I finally entered the real world again, but I quickly realised I could barely move so I had a little peep under the covers and it was obvious why, I was horribly swollen and miss-shaped, there was four circular holes in my abdomen where the robotic arms had been and lower down what I can only describe as a letter box shaped wound.(photo a couple of weeks after the op) Shortly a lovely nurse appeared and told me I had to drink all 5 jugs of water that were now on my bedside table, as my blood pressure was still very low. After what seemed like an age of endless sipping id done my job, the nurse will be happy, but when she came back she now decided to tell me that with the amount of anaesthetic id had its very difficult for your bladder to wake up and id probably struggle to wee and would require a catheter inserting. No way! and why only tell me this news after I’ve just force fed myself a bathtub full of water.
I was bursting but no matter how many times the nurse took me to the toilet, I couldn’t even muster a drip, we tried running the taps, plain old patience, nothing worked. She did an ultra sound of my bladder and confirmed it was full to the brim, but still I held firm, some things are just not meant to have tubes shoved up them. I was adamant. Within an hour I was begging the nurse to get the catheter in and relieve me of the pain, the procedure was nowhere near as bad as id imagined but the relief was other worldly and I nodded back to sleep.
I was woke by a doctor id never seen before, he explained the operation was successful but they needed to take a few more bits than they had planned on but all would be explained to me by the surgeon at a follow up appointment, I couldn’t be bothered asking any questions I just took it in my stride because all I wanted to do was go back to sleep however the next thing he said genuinely shocked me, “we can remove the catheter now and you can go home”. Now at this point I still had one foot in reality and one foot in queer street, I couldn’t move, let alone get out of this bed and get dressed.
Sure enough the nurse returned and removed the catheter, the saline drip, the paracetamol drip and the canula from my hand and said you’re free to go now I will arrange for a porter to come and get you in half an hour.
I rang my wife to come and get me and I started the process of shuffling an inch at a time to the side of the bed, after an age I managed to swing my legs out and got my feet to touch the floor to remind them what it felt like, there’s no chance I was standing up, any attempt would have ended with a face plant for sure, so I sat there naked, trying to hook the bag my wife had packed for me with my foot to drag it closer, not a chance! it weighed a tonne, I just couldn’t move it, I’ll just wait surely a nurse will come by soon.
The next person in the room was the porter, he said I’m here to take you to the discharge lounge, why are you undressed, I explained the situation and the fact I couldn’t move my bag so this hero with a wheel chair offered to help me get dressed. As he went to pick my bag up it soon became clear what my problem had been, the bag weighed about a tonne, my dear wife had packed enough clothing for a fortnight in Benidorm, enough snacks to fill a spar shop and for some strange reason a volume of hard backed books for me to read, we skipped the socks and underpants and after some messing and lots of pain I managed a pair of joggers, a t shirt, and some flip flops, yes in my bag I had a pair of trainers, a pair of slippers and a pair of flip flops, I also had the trainers I was wearing when I came to hospital, she’s certainly thorough is my Claire.
In the discharge lounge I was waiting for some paperwork and I presumed some medication, pain relief maybe, after all I had just gone through several hours of major surgery and had an organ removed and god only knows what the other bits were. When it was my turn I was handed an envelope with a letter in it, no pills, nothing, when I asked if I could have some drugs, the lady replied, just stop at the shop on your way home and grab some paracetamol. Had she read my notes? Now I love our NHS and everyone involved in my care and treatment was 1st class right up to the bit when I was kicked out, where was the care, the empathy, I was in agony, in a wheel chair I couldn’t move and couldn’t get out of and I was doing my best to hold my insides in which kept one of my arms occupied and the infamous bag had been left on the floor in front of me, I had no idea how I was going to get from here, to the car outside.
When Claire arrived she parked at the door and came in to get me, there was no one around to help, so in a scene reminiscent of saving private Ryan, she dragged / carried me to the car like a battle field casualty and we began the journey home at around 5MPH. It’s at times like this you realise the UK’s roads are similar to ploughed fields, I’m trying my best to hold all these wounds together and every pot hole and speed bump of which there are hundreds are sending searing pains through my body. We repeated the whole palava outside our house but finally, I was home.
The Recovery
“Today we fight; tomorrow we fight, the day after we fight, if cancer plans on winning it better bring lunch because it’s in for a long day”
The first few days were the hardest, I couldn’t sit down, nor stand up and lying down was even worse as that meant at some point I would have to get up and that was near impossible. My abdominal muscles had been severed and boy do you need them when it comes to anything more than raising an eyebrow, I didn’t sleep a wink for days.
I was tired, feeling vulnerable, I couldn’t eat, everything made me sick, even a brew tasted like metal, and I was in constant agony and requiring Claire to inject me every day for 4 weeks in the stomach with a blood thinner we had been trained to use., but what no one tells you about is if you have been under a heavy anaesthetic for some time it can take a couple of weeks to get back to your normal self, during this time your brain can do some very strange things indeed.
I started to have dreams / hallucinations as soon as my eyes shut; they were so real even when awake I wasn’t sure if it had actually happened or not. It started with a Nigerian nurse standing in the door way speaking in silence so I couldn’t hear what she was saying, I’m sure I know where this came from as one of my nurses in hospital had just moved to the UK from Nigeria so I guessed this figure meant me no harm because the nurse at hospital was lovely.
Next I was woken surrounded by several of these Nigerian nurses around the bed trying to attach me to all kinds of medical equipment, telling me it’s for the best, somehow I managed to fight them off, the strangest was yet to come however, when I was woken by a loud noise, it was the opera singer Montserrat Caballé belting out the Freddie Mercury song “Barcelona” from the foot of my bed. What the hell was going on with my brain? I hadn’t heard that song for 30 years! The whole episode was really quite frightening and lasted days.
Anaesthetic does something to your sense of taste, everything I put in my mouth tasted metallic and made me nauseous or actually made me vomit, both Claire and I were trying our best, she was trying to get me anything I might fancy or might keep down, endlessly bringing me tiny bits on a plate, like a few slices of banana or half a slice of toast with all the crust removed, I just felt like an empty shell.
Sometime before the diagnosis I was 14 stone give or take, my weight never changed by much as I’m quite a solid build, I’m 5 foot 11. About a week after being home I thought I’m looking terribly thin so I decided to get on the scales, the numbers scared me, 9st 13lb I hadn’t been that weight since my school days. I was in a shit state.
From that moment I decided the fight was on, I was in for the fight of my life and I was going to have to dig deep and grizz it out.
One of toughest battles is the one with your own mind, your thoughts, your fears, the dark places your mind wanders uncontrollably to, I had to get a grip of this and turn everything into a positive, that pain I’m feeling is a sign I’m healing, the 10 steps I did today is more than the 5 I managed yesterday, that morning sunrise is the blessing of a new day, you get the idea. I was working so hard to stay on the right side of things. My eldest sister, Bev and her husband Ryk got this from day one and became the number one people I needed to speak to first about anything. There was never any doubt from them that I could beat this thing and I could speak openly to them without the need to protect them from the realities of what I was going through which is what I was trying to do with Claire, my children and my parents. They sent little gifts in the post, some treats, a book, a Llama (I won’t even try and explain that one) but it was the perfect timing and just what was needed, I drew strength from their belief.
Eventually I had to tell all my loved ones to stop crying and being down every time I saw them or spoke to them, I know it is just as hard for them as it is for me, but it takes such a lot of energy to keep putting yourself in a positive place and seconds for someone to bring the mood crashing down, I think my parents found this concept the hardest as it was still early days and in their eyes I’m still about 6 years old.
A week on from the operation I was now managing to eat, and get around the house and into the garden, the next step, can I actually go out somewhere?, I can walk slowly if I hold my insides together tightly with my arms. Prior to the diagnosis Claire and I had been keen hikers and had climbed many peaks in the Lake District, the Yorkshire 3 peaks challenge, and the peak district, surely I can manage a little stroll somewhere.
The next day I convinced Claire to let me try and together we drove to Brockholes nature reserve, just down the road from us, parked in the carpark and then attempted the 300yd walk to the waterside café, my PB for steps this week had been 30, I was very shaky and unsteady on my feet, so partly walking, partly using Claire as a crutch, we broke the walk down into little sections of around 25yds at a time, it took us an age but eventually we made it, to be sat by the water, on a beautiful day filled me renewed optimism and determination, we sat in the early evening sun for an hour watching the wildlife and baby frogs by the hundred heading across the path away from the water on their unknown journey. We headed back to the car in the same fashion and was soon back home, exhausted.
A couple of days later, feeling stronger, and encouraged by our previous trip we headed off to Spring wood for a 2km walk through the woods, I was still needing to hold my insides together, but the shakiness had gone, and if I moved slowly and on flat ground I was getting around quite well now and was managing a couple of hundred yards between rests. By the end of the week, we tackled the Yarrow valley walk, another lovely flat walk on good paths with a distance of 7km, I was really pushing on now, the next thing can I go up a hill, are my legs strong enough, will the stitches hold? my determination was almost becoming an obsession.
On the Friday 3 weeks to the day since the operation and after a few more short walks I was feeling stronger and stronger so we took the decision to go for it and tackle a hill walk. Rivington pike, Noon hill and winter hill was the target, and at 1496ft and 6 miles was a real challenge at this time. From the carpark you almost immediately start the climb up the hillside towards the terraced gardens of Rivington Pike so with trepidation we set off. Very quickly I realised I felt good, I had no pain and the legs felt reasonably strong, I was soon into my stride and yomping on, we reached the summit of winter hill in good time despite the fact the rain was now coming down sideways and the wind was trying to steal my cap, we sheltered behind a wall had a quick brew and started the decsent back to the car. I was so proud of our achievement, a few weeks earlier when the diagnosis was broke I was convinced my hiking days were gone.
The Following weekend was the last walk before my first follow up appointment with the surgeon, I was feeling really good now so we got together with Claire’s sister, Louise and her husband Mickey and walked the lovely Tolkien Trail, a 5.5 mile circular trek from Hurst Green in Lancashire and then on to the Bayley Arms for a couple of pints and some tea.
Monday was D-Day, back to see the surgeon, he was going to explain the operation, everything he had found and give us the results of the biopsy, my head was full of random thoughts, was it worse than 1st thought, is that even possible, how long do I have? The not knowing is the worst. Fortunately for me I have Claire, she is so strong and always has the ability to ground me in reality and facts. “There is no point picking a fight with something that doesn’t exist, whatever the consultant says to us in that room we will deal with it and over come it together” she said.
As we sat across the table from our consultant it was explained to us that the tumour and everything else removed during the operation had been tested and it was confirmed exactly what kind of cancer I had, it turns out it is was a variant of something called renal clear cell carcinoma and it was one of the most aggressive cancers around, well it bloody well would be, I thought to myself.
He went on to describe the operation, not only did he remove the kidney and tumour he also had to remove my adrenal glands, some of my diaphragm and some of my back muscle as the tumour was attached to them, whilst in there he was convinced some of my lymph nodes were cancerous, so he removed those too, (no wonder I was in bits when i got home) he explained that everything removed had been sent off to a lab for testing and when the results came back he was really surprised that only the kidney was infected, everything else was clear.
This was the 1st piece of good news id heard in weeks, the second was when he said, the operation was perfect, I have done an excellent job and I’m sure you will come back and see me in 10 years time. Even if this was just bluster I was going to hold on to those words, positivity had been in short supply.
He then had a quick look at the wounds, happy with his work, he said you are making good progress, I think you are ready to start having some little walks around your garden and maybe try the stairs, little did he know we had just climbed winter hill and half a dozen long trails, I wasn’t about to tell him what we had been up to, he seemed to be in a good mood!
The Ups and Downs
Today is the 1st meeting with my new consultant at the Oncology department within the Rosemere cancer centre, today I will find out what they have planned for me.
As we spoke with the consultant she explained the cancer appeared to be just in the lungs and the pleural sac, that was a relief, and it was the pleural sac that was of most immediate concern as it was quite large. She explained that life expectancy from a diagnosis like this is around 2 years, and if I had presented with my condition in the year 2000 they wouldn’t have even attempted to treat me, she followed this with, however there are some new treatments available today that we are just starting try and given your strength, age and fitness we think you would be a good fit for the program. This sounded positive.
The new treatment was something called double dose immunotherapy treatment, basically it uses your bodies own immune system to fight the cancer cells, one medication stops the cancer cells from hiding, the next treatment super charges your immune system to hunt down and destroy the cancer cells. I had a CT scan to measure all the tumours accurately, then watched a video all about the treatment and the following week I was ready to start. In the beginning I was to spend a day every 3rd week in Rosemere, attached to an intravenous drip as this is how the treatment is administered then they would follow up every 3 months with another CT scan to measure any changes. I can mange that I thought.
I went for my 1st round of treatment as planned, it was a fairly straight forward procedure, after a few hours of just sitting in a chair waiting for the bags of drugs to empty, I was ready to go home, after all the warnings of all kinds of horrible sounding side effects, I didn’t feel anything , I’d even had a free brew and a cheese sandwich. About an hour after being home it hit me, the best way I can describe it was my body felt like someone had just turned down the dimmer switch to zero, I crashed on the settee and a slept soundly for a few hours.
Over the following weeks we got used to the same routine, treatment, home, sleep. It was explained one of the reactions to your body working so hard is chronic clinical fatigue, when you have it you cannot sleep it away as you are just as tired when you wake, you need to accept it and basically do nothing until it passes. This was a pain as I have always been the epitome of a busy bee and have never been good at just sitting but if this was the price to pay it was a small one.
Somewhere along the line I had developed this inner mantra / thought, if I cant do X, Y or Z cancer wins and I wasn’t about to let that happen, so I got our team together and we went off and completed the Yorkshire 3 peaks challenge, for me it was a message to the universe not to give up on me, I’m a fighter.
3 months had passed, I had been for a CT scan, and was waiting anxiously for a phone call from my consultant with the results.
When the phone rang I was braced for the worst, but the news was amazing, only around 30% of people respond to immunotherapy drugs, and I had had a positive response, another win for me I thought, the tumours had remained relatively stable. I carried on with the same routine for another 3 month period
I was now having some strange side effects from the treatment, my hands started swelling to the point I couldn’t bend my fingers and just as we landed at a cottage in Whitby that Bev and Rky had booked to give us a short break, all the skin decided to fall of my bottom, now sitting down is an underrated past time when you cant do it.
It was late summertime and I had been taking daily walks to keep my fitness and spirits up when I noticed it was getting harder to breathe, then one day almost impossible to breathe, I could hardly speak, so it was arranged for me to go into hospital for some checks, it turns out my lungs had filled with fluid, a pleural effusion, this was my body’s response to the tumour, a foreign object and was a sign the disease was progressing.
It was arranged for me to go the following week to have a procedure to place a chest drain in my side, and have the fluid drained daily to allow me to breathe better. In hospital they immediately drained 1.5 litres of fluid from my lungs and for the 1st time in ages I could take a full gulp of air. The next day at home the district nurses came to open the tap and drain the lungs again, this time 1 litre of fluid, this would continue for the next few months. I had no idea how long this irritating drain was going to be in for but everyday day a litre of fluid was coming out so I knew without it I was in trouble. On the run up to Christmas and without any warning the nurses came to drain the fluid and instead of 1 litre which had become the norm there was only 500ml, the next day 200ml the following day, nothing! They told me this never normally happens, I rang my consultant with the news and she said the only way your lungs have stopped filling with fluid is if the tumour has shrunk and we need to confirm this with a CT scan and get the drain removed.
I had the CT scan and was waiting for the results to come through on Christmas Eve, My consultant rang me and immediately said I’m going to give you the best Christmas present ever, your tumours have shrunk by about 50%, we never really expected the chest drain to come out so whatever you are doing keep doing it. Only around 10% of patients have this kind of response to treatment. Yes, another win for me.
The next problem I had was without really noticing I’d started sleeping more and more, sometimes sleeping all night then going back to sleep again on the settee during the day, this progressed to struggling to muster the energy to get off the settee at all. After some blood tests a doctor rang me about 9.30pm one evening and said I had to get to the hospital immediately as there had been some anomalies with my blood results. I had some basic observations done and was admitted for the night as my blood pressure was dangerously low, in fact it was so low the doctor said it was the lowest he’d ever seen with someone still upright and promptly took a picture of the reading on his phone. after more tests it turns out I now have Addison’s disease caused by the cancer drugs, this is basically when all the various hormone producing glands in your body have been burnt out by the cancer treatment, such as pituitary, adrenal, thyroid etc they are collectively known as your endocrine system and mine was now shot, I was to be on a range of meds for life to counter this, as soon as I took the first batch in hospital I could feel myself coming back to life, again a small price to pay I suppose.
The next 3 month period ended with a devastating scan result, the tumours had doubled in size, my consultant warned me that the immunotherapy had probably stopped working now; sometimes you just stop responding for no reason. After everything, how hard I’d fought, I was all the way back at day one, just now I was considerably more tired, and probably losing the drugs id put all my faith in, and to top it off I received a letter from the hospital saying my future treatments are for palliative care only now, I knew what this meant, but I tried not to dwell on it, this was just someone’s opinion.
It took me several days to get over this set back and re focus. I told myself it was a test of my metal and I would go again with all the extra energy and positivity I could find.
I was sent for a week of radiation therapy; it would probably be ineffective for me but was worth a go, what did we have to lose? I don’t know whether it worked or not but I got a free tattoo on my chest which was the place the beam was targeted to.
We booked some holiday time in the Lake District climbing some wainwrights then off to Wales for more mountain days, we climbed Snowden, then Mynydd Mawr, followed by some relaxing beach time. By the time we were due home for the next round of treatment I was well and truly back in the positive camp and feeling strong, our break had worked wonders.
It was scan result time again and I was really feeling the pressure build the week leading up to the phone call, when it finally arrived I was amazed, there had been some shrinkage of the tumours, the immunotherapy was still working, even my consultant was surprised. I couldn’t believe it, another win!
The last scan result of the year was another fantastic present, the tumours had shrunk by about 50% I was finally back to where I’d been a full year ago, I was feeling good, we had been making brilliant memories. Through the darkest of times we have had some of the best times! I was ready for 2022.
The year started off really good, I was feeling as good as I had in a couple of years, my scan results came back in the spring, everything was stable, the Addison’s disease seemed to be under control, the side effects had settled down, I was doing alright and then from nowhere the next bomb landed. I woke up unable to breathe properly again, as the days passed it got worse, I was terrified the fluid was back because I knew what that meant, the disease had spread again. I was sent to the emergency hot clinic on the cancer ward for a CT scan and some tests.
It was a kind of relief to discover it wasn’t fluid but something called pneumonitis caused by my own super charged immune system which had now decided to attack my own lungs, this was a direct result of the immunotherapy drugs that had been working so well for me. My blood oxygen levels were down at 83% which is dangerously low and I was unable to perform even basic tasks, so it was decided I needed to stop my cancer treatment and go on large doses of steroids to slow down my immune system which hopefully should take a couple of weeks. 5 Months later I was still on the steroids and still had pneumonitis, it just wasn’t stopping, and to make it worse I’d had no cancer treatment for months and my scan results were due, I was dreading the news.
When the consultant called she explained the results of the CT scan were amazing, there was almost no visible cancer to be seen there had been that much shrinkage, I think we were both shocked but she explained the immunotherapy can continue working for weeks after you stop taking it, so that probably explains what we are seeing. This was a great win!
Over next few months I continued with no cancer treatment just the steroids for the pneumonitis which was slowly starting to improve although I was still quite breathless doing simple things and then I had my final CT scan of the year.
The results were just amazing again, my consultant told me there was no real medical reason to give me for where we are but the tumours on the lungs have gone and the rest is almost not visible and may even just be scar tissue, they say it will probably come back at some time but I couldn’t of wished for any better news to end 2022, I am due the results of the next scan early in 2023 so I don’t know what the future looks like but do any of us really know what the future holds, I’m still here, still fighting and the next part of the journey is yet to be written ……….
