Update - an honest blog #livingwithsarcoma
Summer is my favourite season. It is my birth-season – I’m not sure if that bears any rationale but it has always been my favourite. August is my birthday month (yes, birthday MONTH) and I just feel I have so many happy August memories. Sunshine, family holidays, sunflowers, BBQs and picnics (summer food is the best food), my birthday (25 of them now!). In the winter, all I think about is summer. I dream of sitting in the sun, being on the beach, eating an ice cream, swimming, afternoons spent in beer gardens – purest joy. When I think about me at my happiest, I think of myself by the sea in the sunshine with good company.
This summer has been packed full of happy memories, and I am currently clutching on to the final dregs of warm sunshine, notoriously limited in the UK.
However, summer 2022 has also been a bit of a shitshow. Excuse my language.
I hate being a negative Nancy – but I have really felt the burden of being a cancer patient this summer. I have also just felt the burden of life, being an adult, and everything else that comes with life – things even non-cancer patients endure. I think even with the general ‘life’ struggles this summer I’d have struggled, but add on hospital trips, bad scans, treatment plans up in the air, and seeing my cancer friends go through similarly shitty times… It’s been a lot.
When I think about it, the whole year hasn't been the easiest ride.
When a new year hits, I don't always get the sense of 'fresh start' that I feel I am supposed to. I just feel...cold. It's winter, January and February are indisputably the worst months of the year (I am standing firm on that statement). Christmas is over, we have nothing but the Spring to look forward to. Although February is short, it quite often drags on. Jan and Feb 2022 for me were no different. But once March/April hit, it's like my year finally starts. I finally feel that 'fresh start' sentiment, everything feels lighter, the weather is nicer, people are generally cheerier. It's a bit like coming out of hibernation. This February, I finally rejoined the gym for the first time since before the pandemic. I felt motivated. We lowered my cediranib dose down further, to 20mg (where I'd originally started on 30mg), so I was finding it much more manageable - just the odd bout of diarrhoea, I could handle it. But then, late February, me and my family were handed our notice and forced to move house. Unexpected. Stressful. Obviously. We were given 2 months to find somewhere new to live.
I had a CT scan in March and my consultant said it looked stable. I left happy.
In April, we moved house as a family. As stressful as it all was, we have settled in really nicely. It was a big downsize so meant a lot of sorting and chucking away was necessary, but all in all, it could have ended up much worse.
So, the year wasn't going as planned, but whose year ever does?
I went for my usual consultation at the hospital in May. I thought, I'll be checked over, have a blood test, get my meds for the next month, job's a goodun.
Well, that didn't quite go to plan. In fact, I have written about what happened in May and June in a previous blog - The end of the road for cediranib? (maddiescancertales.com). If you read that blog, you'll know that I had a repeat scan in May which showed new pesky nodules in my right lung. My team decided to enrol me on a clinical trial, called Immunosarc.
Immunosarc involves a daily pill (very similar to cediranib), and 30 minute immunotherapy infusions every 2 weeks. It would have been a huge adjustment - a scary one. New routines to get used to, infusions (I am needlephobic so the idea of this freaks me out a lot), new side effects, fear of the unknown and familiar questions like 'what if it doesn't work?'. It was a really uncertain and, to be honest, terrifying time.
In July, I went for my first trial appointment (accompanied by a good friend). That deserves a blog post of it's own, just so that anyone who is going on a trial can have some idea of what to expect. I did post a tiktok about it which I will link at the end of this post. It consisted of lots of tests and scans to check my eligibility for the trial. Following this appointment, if I was found to be eligible, they would have to biopsy my lung. This was yet another fear I was having to wrap my head around, as it was a mandatory condition of the trial.
Then I got the call. I wasn't eligible for the trial. With another CT scan they found that the new cluster in my right lung had shrunk away between 25th May and 15th July. This suggested to them either that it wasn't a cancerous cluster, or cediranib had done it's job and had shrunk it. They think it was more than likely an area of inflammation. These things do happen sometimes, and without doing a biopsy, we can never be 100% certain of what something is.
I was devastated to hear I wouldn't be going on the trial. I had a complete meltdown. I had been working myself up for it for over a month, just to be told it wasn't going to happen.
They said 'we think cediranib actually is working, so you can go back on it'.
But, rewind - in May my consultant said 'we don't think cediranib is working'. That was before this cluster even showed up. Go to my previous blog and you'll see that. So, what's going on?
Cue me losing all faith in my oncology team and going into panic mode. My brain was switching between a slight sense of relief (that the cluster had shrunk), anger (at the stress of the past month), confusion, and fear. I had run out of cediranib and had stopped taking it on 14th July. I wanted a plan and I wanted it fast - but I also wanted answers and did not want to go back on a drug that wasn't working. I scoured all my past letters and scan reports and prepared all my questions for my next appointment.
I saw my consultant on 1st August and essentially ranted at her for about 30 minutes (eloquently, of course). She justified their approach and tried to explain why they thought returning to cediranib was the best next move. I asked her and the team to look back at all of my scans and tell me for certain whether there had been growth while on cediranib. She agreed. A week or so later, I got a call back, and my consultant said 'there has been small, but definite growth of some of the nodules'. Although, there had been no new nodules since starting cediranib, and the growth was miniscule. She also called me 'eagle eyed' (tell me something I don't know :p). In the letter it says 'there is evidence overall of a small increase in size of left lower lobe nodules (max 2-3mm) since Dec 2020.' They had sent my scans over to have a RECIST report. This is a type of radiology reporting which looks at scans in detail to determine whether they meet a certain bar of 'progressive disease'. Progressive disease is needed to enter a clinical trial.
Finally, a week or so later again, I heard the news that the RECIST report concluded that my cancer did not meet the bar for 'progressive disease'. I can't say I am happy to know that my nodules have grown but seemingly not 'enough', and that maybe I've been taking cediranib in vein for some time. But with cancer, and this cancer in particular, it is impossible to know exactly what's going on, and what the right thing to do might be. It is 'good' that my cancer is considered 'stable' at the moment. I just wish I didn't have to go through the last few months of panic and stress.
In this instance, we decided that returning to cediranib, but back at the original 30mg dose, was the best way forward. Give it another few months and see what my lungs are doing then. Luckily, as the growth of my cancer is so slow, we can afford to play around a little bit, time is on my side. However, the prospect of being on drugs (for life), suffering the side effects, just to discover they're not working and we have to find a new line of treatment, is soul destroying.
I restarted cediranib just last week. There was a long delay as my bloods weren't playing ball. When I say this summer felt like one thing after another, I really mean it. My bloods were indicating a raised liver level. Which can be normal, but it was continuously high for weeks, which is a concern. They didn't want me to take cediranib and potentially make things worse for my liver. Fortunately, the level has decreased again, and I will be having a liver Ultrasound next month to rule out any damage or anything else.
It is crazy that a couple months ago I wrote a blog titled 'the end of the road for cediranib?' and this month, 2 years after first starting it and 2 months after 'officially' stopping it, I am back taking it again.
Now it is back to 3 month waits for scan results. Bring on December where hopefully we'll see shrinkage on my chest scans... *crosses fingers*
All the events of this summer has been a lot of change to wrap my head around, just to be made to unwrap it again. And it hasn't just been the stuff around my health that's been challenging. In August we lost my wonderful friend , Danna, who died of sarcoma (see my previous blog), one of my close friends got really shitty news about her cancer spreading, and my bloody guinea pig died. While a lot of things are perfectly perfect in my life (thankfully), a lot has been quite crappy.
I have been feeling so much anxiety about so many things, and I have been feeling quite down the last couple of weeks. The questions/thoughts swilling around my head have been variations of
'What if cediranib doesn't work?'
'What if the side effects are worse this time?'
'What if I can't handle the side effects?'
'Is this pain in my back cancer?'
'Is that chest pain? is that the cancer?'
'What if things have spread during my treatment break?'
'Can I really do this forever?'
Having cancer is no fun. It's okay to have bad days - and that's what I've been reminding myself. I had thought I'd accepted the fact that my cancer was forever, but with these dodgy scan results and being fast-tracked into a clinical trial and being put back in to panic mode, I've realised that I'm not okay with it. I have felt more emotionally able to deal with everything this summer, but that doesn't mean I have found it easy. I just feel like I'm *not* on the verge of a mental breakdown. I have more healthy coping mechanisms than I did when I was first diagnosed. But it's impossible to always be okay. Nobody is always okay.
I have been non-stop for months (or, at least it feels that way), so this weekend (1st Oct!) I allowed myself to fully rest. I blocked out a weekend to just stay at home and recuperate. I'd been feeling so lethargic and down but I'd been keeping on, saying 'yes' to everything and trying to do everything, and the fun stuff was starting to feel less fun. So, I took this weekend to myself and boy do I recommend it. If, like me, you are a busy bee and never spend 2 consecutive days just at home, block out a weekend and just be. It's important to listen to our bodies, and if your mind and body is screaming at you to 'STOP' then bloody stop!!
Although cancer never stops, I don't want my life to revolve around it. It's so important to me to do 'normal' 25 year old things. I just need to listen to my body and mind a little bit more and be kinder to myself. Remember that I'm not a 'normal' 25 year old, I'm a 25 year-old cancer patient, and some things may be more tiring for me, and I may have complex mental and physical challenges to face that others my age may not... As much as I want to live each day to the fullest, that is completely unrealistic. Working, resting, doing nothing, feeling sorry for yourself - is all okay. It's not a waste of time. It makes us human. I will continue saying that until I fully believe and live it.
In light of being more positive, I have come up with a list of things that make me happy in autumn/winter, and a list of things I would like to do/eat/see this winter, in an effort to be less miserable about it. If, like me, you dread the colder months, I would highly recommend doing this too. Maybe I'll share mine in a blog.
Maybe I won't.
I'll leave you in suspense.
Thanks for reading.
Until next time,
Link to my silly tiktok video about my clinical trial appointment:
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