I’m going to start this blog describing the events of the last week or so and then take you back over what has been a difficult two months. The last blog was quite optimistic, however things have not continued that way. On Saturday 26th November I went to my cousin Jenny’s wedding. I felt it was going to be difficult because just two days before I had considered going to Bath A&E due to how bad I felt. But I managed, with my family’s help, to control my symptoms of vomiting, restlessness, no sleep and a headache that was so relentless and severe; that I felt suicidal. Friday was ok, but Saturday was particularly cold and in the church I was tired, freezing and miserable. I felt out of place. This was supposed to be a happy day and I was very pleased Jenny was marrying her nice chap Dave. It took wearing three warm coats to finally make me feel a tiny bit warmer. Dad grabbed he and I a lift from a total stranger amongst the wedding guests, and I arrived at the reception feeling reasonably composed. Arnos Vale Cemetery has surprisingly become a popular wedding venue in Bristol and the meal was in a beautiful and grand chapel building. As the afternoon and evening progressed I got considerably worse despite self administering an arsenal of medication: morphine, paracetamol, ibuprofen and some anti-sickness tablets. Unfortunately due to the lack of toilet facilities in the building and having nowhere to run to when I had an urgent need to be sick after the starter, I found myself unintentionally aiming my stomach contents on a gravestone. I felt humiliated and quickly explained to onlookers that it wasn’t alcohol, it was cancer.
I slept through the speeches, afterwards I spoke quickly to the happy couple and my cousin Ann, cried a lot and left in an Uber taxi with my mum. I had so wanted it to be a positive day yet it just got more and more of a struggle as the day went on. This was a shame as I know a lot of work went into creating a beautiful wedding. At home, I rang Georgie (she was unable to make the wedding), sobbed a lot, then went to bed. Mum piled on a duvet and blankets and put an electric blanket beneath me but my teeth were literally chattering with the cold. I must have slept about an hour before spending the rest of the night very restless, with severe vomiting, headaches, neck pain and right sided abdominal pain. Mum and Dave looked after me in the night, making me sip water, and in Dave’s case making himself up a makeshift bed on the floor beside me for the last few gruelling hours and putting compresses on my head. At seven in the morning Mum dialled 999. The paramedics were great. With a fentanyl patch already on it still took around 40 mg of morphine (half IV and half orally), IV Paracetamol, Ondansetron and Ibuprofen to get my symptoms under control and I was high… very high. That was probably the pinnacle of this episode but most of the days before and after this have been very bad. Just a couple of days earlier I had to stop playing pool with Jack and Kieran because my head was so ferociously hurting. How has my quality of life capitulated? In other words why has it gone so Pete Tong?… Wrong?
Going back to October it started in a little known tube called my right ureter. Urine flows down these from each of the kidneys into the bladder and out of the more well known urethra; definitely a part of the human anatomy that I hadn’t given much thought to before. On Monday 24th October, I had woken up in quite a bad way. I was feeling rather well having been to the Body Balance class at the gym the night before. After the class Dad, Paul and I played a new board game, Tzolk’in The Mayan Calendar; a somewhat complicated game but thoroughly engrossing. I went to bed feeling pretty well still unaware of what was to follow. In the morning at about 8am abdominal pain started and a few minutes later I vomited a lot. (This is a pattern that has continued with the urge to vomit coming on really quickly and usually a few full vomits being followed by excessive amount of retching). I had some breakfast an hour after being sick and hoped it would stay down. I took my Prednisolone afterwards and it came straight back up. Now for most people not keeping tablets down for one day wouldn’t be a problem, depending on the tablet and their own condition. However with steroids this can be a disaster, especially as I know from recent tests that my adrenal glands are not yet ready to start making enough cortisol to counter this. This state of affairs has been brought about by my prolonged period on a high dose of steroids. Without corticosteroids the body goes into a state called an “Addisonian Crisis” basically due to the lack of cortisol and cannot maintain a blood pressure and eventually organ by organ will fail. Being a doctor I was very aware of this problem so we got into the car and headed to Bath Hospital, with Dad driving and Mum in the back seat. I had gone home to my parents for a few days. They have a Bristol postcode but Bath is their nearest hospital, about twenty five minutes drive away. On the way Dad stopped the car for me to be sick. On arrival I explained the situation and we went straight through to a bed space in majors. I wasn’t in a critical position but I knew I would be unless I got some steroids in the next half day or so…
After receiving the intravenous steroids (100mg Hydrocortisone) which perked me up quickly and having had blood tests coming back normal I was discharged. The next day Paul, Mum and I went to Cardiff. Dad was working in Barry and dropped us on the way. We went to the Doctor Who experience, which started with a little interactive adventure. We had to find these crystals on different sets, a few less shy children got their chance to shine and take the crystals from the Daleks. Unfortunately adults were discriminated against so I missed my chance to save the universe! Surely I’ll get the award for that someday. The museum was an entertaining hour and a half, finishing with a walk through different sets and countless monster costumes.
Georgie rang while I was outside and I told her what a brilliant day we were having and just then I noticed a bike hire place, where you could hire cycle golf buggies. We felt energetic and just about got the very heavy contraption moving down the side of Cardiff Bay. After that we had food in Wagamamas, followed by the cinema to watch the film Inferno (the film inspired by the book of the same name by Dan Brown). That night I went to bed feeling content; only to be woken up about midnight with severe right sided abdominal pain. Despite Ibuprofen and putting on some Fentanyl (morphine like) patches, as I didn’t have any Oramorph I could not get the pain under control. I had got to the point where I started to feel so confident about my health I stopped carrying Oramorph on me. However, I knew at this moment that I’d let my guard down, and in this horrific game you can’t ever forget.
That night was horrendous, I just couldn’t calm the pain down enough to sleep. I saw on What’s App that Georgie had just been awake at 4am so I rang her. It helped to organise my thoughts, calm me down, and put a fentanyl patch on. We told each other how much we loved each other, then I woke my parents up, via the toilet to vomit. This resulted in my holding a hot water bottle next to my pain and being read a bedtime story by Mum. I fell asleep but I still woke up with the pain. After vomiting again and a bit of umming and ahhing, we called an ambulance. A good call as the two guys that arrived were very good and got to the crux of the matter quickly; I needed pain relief. Morphine was pushed into my veins, life got much better and we went back to Bath A&E for the second time in three days. They rang the Marsden and the plan was for Bath to admit me for pain control, to administer steroids and get an urgent CT scan. I had a lot more morphine that day; giving me a warm bath of hope in my mind.
I was so tired I drifted off despite the noisy medical admissions unit, the snoring guy across the bay and the near constant beeping sounds from around the ward. I must have woken up about ten times drifting off and dreaming vivid opioid dreams over and over again. A young Senior House Officer came at 6.10 am. I repeat 6.10am. Very, very early. She had two pieces of paper in her hand, despite being bleary eyed the paper looked like the CT scan report. She proceeded to go through the findings, pointing out there seemed to be a new site of metastasis, my right ureter, whilst also reassuring me that my renal function was okay, therefore clearly still draining enough urine. However in hindsight I thought peeing had perhaps got a little more difficult to initiate and was slightly painful. I’m not quite sure that she did the right thing in giving me bad news, of a new tumour when everything had been stable, at a crazily early hour. I have to admit she was very thorough, but because she was so early, I had assumed that the news was going to be good and therefore it came as a shock. Who gives bad news after waking someone up? Surely not great practise. It was too early to contact anyone and I was left totally alone with terrifying news. I wouldn’t recommend it. Please doctors, wait until 9am and give the patient an option to have someone there with them. This SHO was lucky that I am better able to cope than most patients and do prefer to know as much as possible as soon as possible, but I still would not advise it. I then couldn’t get back to sleep.
I managed to get hold of Mum out of everyone I phoned. She knew it was bad or I wouldn’t have called right then. Later she came to the hospital with Dave, Paul and Dad, delayed a little bit as she felt it was better Dave and Paul had some sleep for what was going to be a long day. Dave was already in Bristol from the day before with compassionate leave as he’d had some intuition that bad news was on its way. Georgie and I had a chat at about 8am before the others arrived. I hadn’t cried until then and I blubbed and blubbed. She cried probably even more than me. We’d had such a great few months and this seemed to signal the end of it. Chaos had seemed to be ending, but now it was back. In truth it was never that far away.
Knowing the diagnosis early was useful. I asked the doctor to prescribe “Diclofenac PR” a drug stronger than Ibuprofen which works particularly well up the rectum. My rationale was that it is particularly good for the pain associated with renal stones and therefore might work for this. After taking it regularly I did not need to have extra morphine other than the Fentanyl patches that I’d already put on. By the time the family got there I was actually feeling quite well, pain free and in the mood for a game of Camel Up (in fact several) which lasted most of the day. There were of course some emotional moments about the gravity of the situation. I was discharged that day awaiting a plan from the Marsden. Due to scans not being able to be sent electronically to the Marsden, somehow we’d negotiated taking a CD of the images of the scans from Bath home with us. Thanks to Paul and Dave for helping me work through this process and a helpful person in radiology.
I got home and wanted to see the scan. It was eerie, I was actually so intrigued that emotionally it didn’t affect me. However Dave, and Georgie (who saw the scans over Facetime) found the whole thing more troubling. As interesting as they were; the harsh reality was that they hated the fact that it was my body, Georgie saying ‘I wish this wasn’t of you’. We spent quite a bit of the evening trying to find the ureteric tumour, taking advice from Georgie who’d just done Special Study module in Radiology. Eventually we found what they described in the report.
On the 1st November everything became a bit clearer. There was a mad panic after discharge from Bath to organise immunotherapy as fast as possible if that was necessary. Lavinia (my registrar) who was about to go on maternity leave, pulled out all the stops and I had it lined up for Wednesday the following week. On Tuesday I had an MRI of my head to check for any progression there, (thankfully there was not) and a urine sample to look for cancer cells. I saw Dr. Larkin in clinic; the rarity of my case was exceptionally interesting to him. He explained, as I expected; (after Mum found a case study of an Australian patient), that this was an exceptionally rare event. He and the Prof who have about seventy years of experience between them, had never seen melanoma spread to the ureter. He went to speak to their urologist who looked at the images and felt it could be either a benign tumour, a new primary cancer (transitional cell carcinoma) or a melanoma. Edward, the new specialist registrar, who was taking over my case from Lavinia did a remarkable job and organised a urology outpatient appointment very quickly.
After the melanoma appointment I went back to Bristol for a few days. By Thursday at noon we still hadn’t got a time for the urology appointment, which was going to be at Chelsea and Westminster Hospital. I was starting to get a bit disappointed, so Dad organised going to the theatre that night. They phoned just forty minutes later, Mum and Dad had gone to Aldi. “Er, Is that Dr Sims?” “Yeah” “I’m not sure you’re aware but you have an appointment with Mr Attar at 15.30 today”… obviously I wasn’t going to turn down the appointment. Despite the appointment being over 100 miles away in just a few hours. Mum and Dad arrived back whilst I still was on the phone and I shouted we had to leave now. Mum and I both grabbed our bags and raced to get there, with Dad dropping us at the station in Keynsham, changing at Bath for London Paddington and thanks to Uber for the final leg, we actually arrived twenty minutes early.
The consultant Mr Attar was efficient and had a kind attitude. After the consultation he was desperate to fit me in on his surgical list as quickly as possible. He went to pre operative assessment himself to get me seen and added me to his Monday surgical list. (Remember this is Thursday now) He explained that as he was overbooked and as I had extensive cancer it might not turn out as planned. For example there may be a paucity of time or the anaesthetist could potentially have a problem anaesthetising me.
I felt exhausted by the consultation and the events of the previous two weeks. I was so well and yet the stability was over. I discussed it with Mum, Dad and Georgie, as there was some suggestion that it might not be melanoma, that was good news right? But I still needed a reasonable sized operation. By that I mean somewhere between the expressions ‘minor op, and a ‘major operation’. This op involved insertion of a plastic stent (a JJ stent) from the kidney to the bladder and hopefully if the ureter doesn’t spasm, remove as much of the tumour as possible. All under a general anaesthetic. However I couldn’t help thinking if this was a normal person they’d be devastated by the mere mention of an operation. I phoned Georgie whilst having dinner with my mum. Talking to Georgie always reminds me how much my survival means, we cried a lot, Mum booked a hotel and we stayed overnight, neither of us feeling like going far. The next day the results of the urine sample came back suggestive of malignancy but, admittedly, inconclusive. Was this the end of the miracle?
We didn’t need to wait long to find out for certain. Two days after the operation I started getting headaches again, along with occasional vomiting and neck stiffness. As I had very recently had an MRI head I waited a few days just to be sure that I thought something was going on. The headaches were particularly severe after waking up in the morning. By Saturday (12th) I had decided that I needed to been seen ASAP. So I went from Georgie’s in Leicester to London on the Sunday, with Dave and Paul picking me up by car. Then emailed Nikki at 8am the next day to be top of her email list. She readily replied and Mum and I met to get an Uber to the Marsden.
The Marsden was an efficient machine and by 11 am I had had a range of blood tests and crucially an MRI of my head (another patient hadn’t turned up). Fortunately the Acute Oncology team seemed to have toned down their “Grim-Reaper” attitude and didn’t mention a Do Not Attempt CPR order or any talk of withdrawing treatment. Instead they were very surprised by how well I was, just under a year on from when I was incredibly unwell. But at around 3pm I heard them uttering my name on the nurses station. Albeit I couldn’t really make out what they were saying but the length of discussion implied it was bad. It was. I already knew I had melanoma lesions in my meninges (the lining of the brain and spinal cord) and two of them were growing. Awaiting for the biopsy result of the ureteric tumour seemed unnecessary now. Restarting immunotherapy was almost guaranteed.
On Friday 18th I went to the Marsden with Mum. The day had been set up for immunotherapy. Nivolumab and Ipilimumab, the combination of drugs that had been stopped due to my hepatitis (liver inflammation). I saw Edward and Nikki in clinic. It wasn’t much of a consultation but more of a chat and thoughts. The only medical benefit of the appointment was to find out definitely that the ureteric tumour was a melanoma (which was obvious by then because Mr Attar told me the tumour was black), a discussion of potential further radiotherapy, which was unlikely and to get a prescription. Other than that it was a motivational talk. We all knew this, and I used the term “shit or bust”. Nikki mentioned how much better I was than before starting immunotherapy last time and that my steroid dose was lower and my liver function was back to normal… I suggested a reduced dose of the two drugs and was told that wasn’t possible and even if it was, it would be ill advised as the current dose is the best tested. He went further, albeit not repeating my crass language, he felt it was either do it properly or not at all. I understood I needed a quick response, so full steam ahead but I have never been so terrified. This was a conscious decision to potentially kill me or have hideous side effects with a small chance that my disease might be controlled again. All these thoughts stemmed from the limited experience that the team had. I’m a guinea pig and I know it. The Prof came in afterwards to wish me ‘good luck young chap’ and to say ‘we are all rooting for you’. I thanked him warmly and Nikki too on behalf of all of us. Whatever happens we will be very grateful that they had given me time and more importantly a lot of very precious quality time to enjoy life with Georgie, my family and my friends.
As the cancer was growing… it was now or never. It was a journey into the unknown and as I watched the first drips of Nivolumab enter my veins that afternoon; I knew only one thing I was terrified.
The following weekend was mostly undramatic Georgie and I went to Winter Wonderland after having a short cycle ride through Regent’s Park. The next day going to The Wellcome Trust for its exhibit on “Bedlam”, apt because our lives were chaos once more. I went to see my brother Matt and spent the rest of the week in Bristol leading up to the wedding.
Back to now as described at the beginning of the blog. Every day the headache and the symptoms are getting worse, which has led me to feeling as I am now.