Why I’m adding to the litany of cancer blogs

When I first started writing this blog I explained that I had huge reservations about doing so as wasn’t really sure what the purpose of it was. It seemed to me that there were so many cancer blogs lurking online and I didn’t have anything original or interesting to say. Of the few blogs that I follow the ones that I really engage with are generally beautifully written, or have a particularly brilliant and insightful way of viewing a situation or I know the blogger. In the third instance – knowing the blogger – they happen to be beautifully written and insightful too! So, with that in mind, I don’t really feel like I add anything to the genre. However, I find writing about my situation incredibly cathartic and so the reason I’ve continued to write is an entirely selfish one. I find it useful to give myself time to just sit and write about what I’m feeling and as an added bonus it’s a way for me to look back at my ‘melanoma adventure’. For the record – the name of the blog was a joke but it’s kind of stuck as I haven’t worked out how to change it or what to change it to!

For the first year of writing the blog I only told one person that I was doing it and where to find it and it’s taken me a really long time to point more people towards it and I’m still a little reticent. I have huge doubts about my writing ability and as I’ve said before I really don’t have anything new to say. However, people have been very generous and kind about my blog – possibly because it’s hard being mean to people with cancer but hopefully it’s because once in a while I actually have something interesting to say. I very much like the fact that no one actually has to read it. Unlike getting stuck in a conversation about my melanoma with me and finding it awkward to escape people can chose whether or not they actually want to read the damn thing! The main bit of feedback that I’ve had is that it’s useful to get an insight into what’s actually going on in my head and so, with that in mind, here’s the muddled, spaghetti-like mess I’m living with at the moment.

In my last post I wrote about my impending scan. It’s still impending…and the results are still a fortnight away so no news there. I attempted to explain why this next scan is feeling particularly daunting – it’ll be the longest I’ve gone without treatment since the stage IV diagnosis – and I hoped that by writing it down I could put the nerves aside and just get through the next couple of weeks. Unfortunately, things haven’t worked out like that – the nerves aren’t subsiding and instead I feel like I’ve hit a bit of a wall. Physically there are no obvious problems, no sinister signs that the cancer has progressed but then it often arrives unannounced so that in itself is not a huge comfort but mentally I feel wrung out. The pattern of my life, of my immediate family’s lives, for last 3 and half years has been dictated by melanoma, by appointments, treatments and scans. Initially I lived my life in 6 week blocks and now, in theory that’s moved to 12 week blocks of time. As I’ve said before, I’ve learned to take advantage of this somewhat disjointed way of living – there are more treats and far more ‘life’s too short not to…’ moments and that’s worked incredibly well and I’m sure it’ll continue to do so but right now it feels exhausting.

It feels hard to explain what it’s like to live what is essentially a very surreal life. There are many wonderful things about it but at the very heart of it is the knowledge that I’m busy harbouring a cancer that without treatment would have killed me three years ago and that whilst all appears to be well at the moment I just don’t know. It doesn’t take a lot for things to change and I’m very frightened about my luck running out. There are still other treatment options for me if and when I need them but the only one that holds a tiny hope of a miracle is the one that I’ve already had. First time round it provided months and months of amazing quality of life but it didn’t last – more treatment was needed and I moved further into the realms of the totally unknown.

For a stage IV melanoma patient I’ve been phenomenally blessed – three and a half years of mostly feeling incredibly fit and well is extraordinary. In comparison to many of the other people on my online support forum I really don’t have anything to complain about but compared to my old pre-cancer life I feel scared and I feel sad. I’d quite like to not feel a little bit embarrassed that I told everyone I had months to live and then kept on going. I’d like people to understand that I don’t have the answers – I have no idea how long my current treatment will keep working, neither do my doctors – no one does. I’d like to not have to have developed ways of staying busy and distracted so my life has more to it than just being a cancer patient. I’d like to not be terrified that every slight headache is the sign of something untoward happening in my brain. I’d like to not have a whole list of people who I light candles for who weren’t as lucky as me. I’d like to not have to be grateful that barring an unforeseen catastrophe I’ll see me eldest into secondary school this September but cannot be certain I’ll do the same for my youngest. I’d like to not have had a big old ‘woe is me’ moment – it’s a bit like outliving your terminal prognosis – it’s embarrassing –  but I guess it’s my blog so perhaps it’s ok to do it here as after all no one has to read it.

Why I’m adding to the litany of cancer blogs

Ah joy, scan time again!

For various reasons I’m always a little uncertain as to whether I ought blog prior to a scan. One of my concerns is a fabulously paranoid one -which is if I somehow set the wrong tone (possibly show signs of complacency) that’ll change the outcome of the scan. Obviously, as I’m sure I’ve said before, I really do know that I cannot change things simply with the power of my mind but cancer seems to breed paranoia and superstition and it’s hard not to get a carried away with irrational thoughts. My other reservation is that what ever the results turn out to be it’ll make whatever I have to say now totally pointless.

Regardless, I still appear to be writing so let’s hope I don’t get the tone wrong! My next scan is due in 10 days and I then get my results a week after that. It is, as they all are, a particularly nerve-wracking one. I’m due for both a body CT and a head MRI and the addition of the MRI makes it that bit more stressful. Melanoma has a propensity to go to the brain and it turns out that that frightens me even more than the fear that it might have broken away from the my liver and porta hepatis and started running wild in my other organs. I know of many people on my online support group who’ve done incredibly well after a diagnosis of brain mets but I think all of us melanoma patients would agree that it complicates things and it’s damn frightening. So the fact that I’m due my routine brain scan makes this scan a little more nerve-wracking than the previous one but it’ll also have been over a year since I last had treatment. Since my stage IV diagnosis I’ve never gone such a long period without treatment.

Back at the end of September 2013, when I was first diagnosed, it was clearly very urgent that I started treatment as soon as possible and it was a question of finding a treatment and in my case passing all the trial protocols so I could get started as soon as possible. The wait – nearly 5 weeks felt impossibly long and it didn’t help that my health deteriorated rapidly during that period. Thankfully the treatment started and then worked in the nick of time and kept things ticking along until Feb/March 2015. (I had 4 doses of ipi/nivo across 3 months and then fortnightly treatments of Nivolumab after that). With the onset of surprisingly late side-effects and a short stay at The Marsden I stopped treatment on 5th March 2015 and managed to last until Jan 2016 treatment-free before a scan revealed that the cancer was once again progressing.

My second go at treatment – my re-challenge – took place from February to April last year and unlike my previous go (which to be fair was part of a blinded trial so no way of knowing what I was or wasn’t having) I opted not to continue with the maintenance treatment until it was deemed necessary. The four doses of ipi/nivo had managed to shrink and stabilise the tumours and so, with the support of my doctor, it was decided that watch and wait made more sense. My sense was that the longer I could delay starting the maintenance dose of Nivolumab the longer I could put-off the likely side-effects that got me taken off treatment first time round. Initially I thought it might give me a month off treatment but in fact the second post-scan results were inconclusive and so that led to another month of watching and waiting. The third scan at the beginning of July thankfully showed everything was working – the tumours were smaller and so I got given the rest of the summer off treatment and got to have my first hospital-free summer in 5 years. I assumed that beginning of September scan would show progression and the need for more treatment but it didn’t – it showed stability, as did the November scan and most recently the February scan and so that brings me to now – over a year with no treatment.

What I’d like to do is see how other people in my situation have done but unfortunately/unhelpfully there aren’t any! The Ipilimumab/Nivolumab combo is now offered as first-line treatment for stage IV melanoma patients but this has only been the case since last June and so due to circumstance I’m at the forefront. Add to that the fact that I then went and did the drugs for a second time I’m even more of a guinea pig. Personally I only know one other patient in a similar situation and so there’s really very little data. Obviously, we’re all different anyway and comparisons have limited value but it would be nice to have a little clue as to how long my current situation might last. At my last hospital appointment I did ask but as expected basically got told that I am the data….. On the one hand it’s good to know that whatever happens with me might eventually help other people but it still doesn’t help me battle the uncertainty that is probably the most defining aspect of my life. For someone who has always liked things just so, who likes lists, plans to know what they’re doing I’m doing pretty well with the uncertainty thing. I have no choice, I’ve had to learn to live with it and find ways of making it work for me but come scan time – it’s really hard. I want answers, I want concrete facts I just want to know……

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Ah joy, scan time again!

How often do I think about Melanoma?

I was  recently asked how often I think about melanoma and sadly I fear it’s all the bloody time! As I’ve said before – it’s not all bad. There are some strange silver-linings that have accompanied my diagnosis so it’s not as though day to day I’m feeling constantly miserable about my situation. I guess, the reality is that for more than half of the last 5+ years since the original diagnosis I’ve been having active treatment and that entails endless hospital appointments which makes it pretty hard not to be reminded of my predicament.

1 year ago yesterday I was having my second dose on my re-challenge of Ipilimumab and Nivolumab. My ‘on that day’ app is full of pictures of very superior chocolates which accompanied this treatment and pictures of my view from my hospital chair.

2 years before I was having what turned out to be my penultimate infusion on the blinded drug trial. The side effects were just beginning to kick in but as is so often the case being on a trial I was downplaying them as I didn’t want to stop receiving treatment. I was a little tired, my stomach was a little bit wild and my appetite, although there, was becoming very selective. By the time the side-effects really kicked in I realised that I was existing on a strange diet that consisted mainly of very salty bacon flavoured crisps, snickers bars and ribena – a little different from the pretty healthy diet I generally follow.

3 years ago I was in the early stages of the blinded trial.

4 years ago I was having my lovely year off from treatment.

5 years ago I was taking part in the Avastin trial at Barts.

Given the fact that hospitals and treatment have featured so heavily in my life and particularly at this time of year I guess it’s hardly surprising that I do think about melanoma a lot. Yesterday, I couldn’t help but feel incredibly grateful for the luck that I’ve had, for the fact that my treatment has mostly been incredibly successful, for the fact that I’m still here.

Yesterday, I went to visit a friend – another melanoma patient – who’s currently recovering at The Marsden having just had very major surgery to remove a large part of her liver. Her melanoma  has been kept safely in check for over 3 years with ipilimumab but what is hopefully simply a ‘rogue’ tumour appeared on her liver in the autumn and the decision was made to remove it. I have always been a little frustrated that despite what I was originally told during my original surgery to remove the melanoma – that you can just keep chopping bits out – ‘a bit like taking the bad bits off a potato’ since the stage IV diagnosis surgery has never been a possibility for me. The combination of having too many tumours on my liver plus all the other ones that were lurking around my liver and porta hepatis meant that surgery wasn’t viable. Well, having seen my lovely friend yesterday whilst being delighted for her that she is once again totally cancer-free this surgery was no walk in the park. She’s doing amazingly – she can’t help herself but blimey she’s been through it. It made me realise that ‘the just cut it out’ mantra really underplays how serious these surgeries are. Also means I’m feeling a little less unlucky that surgery has never been an option for me.

Yesterday was also the funeral of a friend. Another person I’d met through the online melanoma forum and had met in person at last year’s conference in Bristol. When I met her last June she was still in shock after discovering that her cancer had spread. She went on to have what was thought to be successful Ipi treatment and the tumours (again liver) were shrinking. However in January she begun to complain of memory loss. This lead incredibly quickly – a matter of weeks – to the extremely shocking news that she’d died. Whilst I don’t know the full details it seems impossible that this was anything other than the dreaded brain mets. She was just a year older than me. Her children are virtually the same age as my children she was, without doubt, much too young to die. Although I wanted to – I didn’t attend her funeral as it was quite far away and in all honestly I think I’d have disgraced myself by weeping uncontrollably – but I haven’t stopped thinking about her and her family.

So, in answer to the question ‘how often do I think about melanoma?’ my original response was right – all the time. Whilst it doesn’t define me  – it has changed my life totally and so  is a huge part of who I am and whilst it continues to keep harming and killing my friends and giving me quite a fright once in a while I shall continue to keep thinking about it.

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