It’s been a really tough few weeks. I’ve not written a blog post because I just haven’t had the mental strength or known what to say without sounding really negative. I try my best to stay positive but recently it’s been hard and I’ve definitely had moments when I’ve wondered how much more of this I can take. I will never give up hope that things will get better but when it’s issue after issue I can’t help but feel physically and mentally battered and to be brutally honest, it’s a tiring slog coping with it all. Things are all still up in the air but we have the basis of a plan, so I’m focusing on the positive steps ahead as much as I can now. Here’s quite a long update about the last few weeks (written from a hospital bed)!
As I wrote about in my previous blog post, May began in hospital with an emergency procedure to drain fluid from around my heart. It was all pretty scary and unpleasant but the worst thing was the fear that it was a sign chemo had stopped working and the cancer was progressing. Sadly this was indeed the case. The past month has been an excruciatingly slow series of tests and scans to see what is going on and work out what to do next. This started with a CT scan which showed a mixed response to the last few rounds of chemo. My lungs, spine and peritoneum are stable and my two liver tumours have shrunk, great! But sadly a number of small new tumours have appeared on the liver. For the cancer to have grown resistant to chemo so soon is seriously bad luck. By hitting it with the big guns of the triple drugs to start, we thought we’d get a decent period of stability, but that wasn’t to be.
The meeting we had with my oncologist to get this news was a depressing one. He didn’t have a plan for next treatment and we got the strong feeling that options were running out. I came away so dejected. He requested a double liver biopsy of the old and new tumours to see if these were also positive for the her2 mutation like my spine (for which there is targeted drugs) and decided to carry on with the existing chemo while he worked out a proper plan, given it had been doing some good. I’ve found the past two chemo rounds incredibly tough. Physically it’s wearing down my body with each round and I’ve felt very tired and pretty nauseous (which I hate). I think part of it is mental too. Knowing it’s not fully working and feeling down makes the side effects much harder to bear. On top of this, the biopsy seemed to take forever and we got very frustrated! It finally happened and I even made it to a friend’s gorgeous wedding the next day. It was so lovely to see old school friends even though I wasn’t up to dancing the night away!
Regardless of the biopsy results, the process was already underway to get approval for me to have the her2 targeted drugs as we know some of my cancer at least is her2 positive so it’s an obvious next step. Although we’d have to pay for these privately, at a cost of around £60,000 a year, my oncologist still needed NHS approval to prescribe and this seemed extremely slow. Unable to bear the waiting, we went back to see the private oncologist we’d seen previously. This was a good move as he not only confirmed he could get the her2 drugs quickly, but that he’d also be happy to take me on as an NHS patient so we wouldn’t need to pay for my regular scans and tests on top of the drugs. We came away feeling more positive that we had a plan if the route with my existing oncologist took too long.
Things improved at the end of the month as my heart was stable and the remaining fluid had gone right down, so I had approval to go on holiday to Portugal at the start of June. The day before we went I saw my oncologist and had a really positive meeting. He’d clearly been working very hard to find the right treatment plan and had been thinking outside the box! Because I have no primary tumour but just markers suggestive of gastrointestinal cancer (ie we can’t be sure where my cancer started), he’d managed to get me recategorised from bowel cancer to upper gastrointestinal cancer. *** A quick bit of biochemistry: your gastrointestinal system is the system that food passes through, running from your mouth to your anus. Upper is mouth, oesophagus and stomach, and lower is large and small intestines and rectum (bowels and bum!)*** Because I had polyps in my bowel, it was assumed I had bowel cancer (and this really is probably the case), but the lack of certainty gave my oncologist the wiggle room to recategorise. The importance of this is that the main her2 targeted drug, herceptin, is available on the NHS for upper gastrointestinal cancers, but not for bowel (it’s more common in upper so there have been the larger trials required for NICE approval). This was hugely positive news as the financial burden was of great concern, especially as we have no certainty these drugs will work (although of course hold out great hope). Whilst privately I would have had herceptin with another targeted drug, I will now be having herceptin with a different chemotherapy. Whilst I hate chemo (the side effects of the targeted drugs are general much less), my oncologist is keen on this route as I have been partly responding to chemo and it means we’re attacking the cancer from two angles.
So, feeling much more positive with a plan in place, we flew off to Portugal for a few days of relaxation, sun and pastel de natas! But of course nothing goes smoothly does it?! We had a lovely couple of days then I started feeling ill. My abdomen bloated. Optimistically I put it down to the wine and cheese I’d eaten; two things usually not on the menu for me. But then my breathing started to feel laboured when I lay down and I just know it was fluid round the heart again. We debated whether to go to hospital in Lisbon or fly home early, and opted for the latter. I was quite frankly terrified on the flight, worried I’d made a stupid decision to fly, but we got home fine and went straight to A&E where I was seen quickly. De ja vu of six weeks ago, they scanned me, confirmed a large amount of fluid round the heart (I overheard a student doctor being shown my scan say, ‘what the hell is that, it’s massive!’ Thanks mate, that’s my body you’re talking about!!), and I was blue lighted in an ambulance back to St Barts to the cardiac unit for an emergency fluid drain in the middle of the night. Bundle of joy… 850ml of fluid came off this time, more than last time. This couldn’t happen again, draining is a risky procedure, so it was decided I’d have an operation to cut a hole in the sac around my heart (a pericardial window).
I’m writing this on Friday, the day after the drain, staring at another weekend stuck in hospital, ahead of the operation on Monday. I’ll update this post once it’s done, but the plan is to stay in hospital probably until the end of the week, then hopefully start the new chemo/ herceptin the following week if I’m strong enough.
What a rollercoaster…
UPDATE: Thursday 13/6
I’m out of hospital, with a hole in my heart… okay, not quite, but a hole in the pericardium (the sac surrounding the heart), so that if fluid rebuilds, it can drain off into the rest of my body and not put my heart under distress again. The operation happened Monday. It was under general anaesthetic, but didn’t take too long and was key hole surgery so the pain afterwards was manageable. I’m sore and I have three new scars for my collection, but I was let out Wednesday evening and I’m feeling fine.
I have new chemo booked in for a week today which is good- the sooner I can get back on track with treatment the better. Oh, and I have my final nutrition exam next Friday, so at least revision will keep me occupied in the meantime!