Breathe normally

‘Breathe in and hold your breath’ followed by ‘breathe normally’. Those simple words are all too familiar to anyone who has regular CT scans and for me, even just hearing them, I can feel a horrid shiver of fear run through me. I don’t even need to be in the scanner for those words to stop me in my tracks – the waiting room, watching 24 hours in A&E – it doesn’t matter – the words still unsettle me. CT scans at least are pretty speedy and I’ve lost count of the number of them I’ve had since my cancer diagnosis – so as much as I don’t love them I have got pretty good at just getting through them. It’s the MRI however that just fills me with utter fear.

I now have to have a brain MRI every 6 months. Logically it makes sense as melanoma really rather likes the brain and it’s much better to pick up a metastases before it’s become symptomatic as they’re marginally easier to treat. So on Wednesday morning as I lay in the scanner with my eyes tightly closed desperately trying to remember how to breathe properly and not panic I kept thinking ‘breathe in and hold your breath’ which under the circumstances didn’t really help with calming down the panic. The panic isn’t just because I’m pretty claustrophobic – although that doesn’t help – it’s the horrible fear about what the scan might be detecting. Once I calmed my breathing down I then found myself trying to use my magic powers of mind control to make anything that shouldn’t be lurking in my brain disappear.

Thankfully and amazingly today I finally get to ‘breathe normally’ as joyfully my results were good. My brain MRI showed nothing remarkable – which despite wanting a spectacular brain has made me very happy and the CT results showed a combination of stability and a small amount of shrinkage in a couple of the tumours. So I celebrated by spending the afternoon having Pembro no. 8 and sighing a massive sigh of relief that barring any side effects the panic can be put on hold until the next scan in January. That’s a whole other year and so not something I need to worry about just yet. So a big hurray for Pembrolizumab and a major phew hopefully followed by some proper sleep as I can now breathe normally.

 

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Breathe normally

Goodbye September

So finally September is over. I tried really hard this year not to get too bogged down in obsessing over the anniversary of my diagnosis and not letting what has become a seasonal September gloom take over but now that the month is over I realise that I didn’t quite succeed. Having re-read my last blog post I can see that despite my best intentions it’s not the cheeriest of posts. As much as I tried to celebrate the good and not cry over the bad I still couldn’t help but feel sad. I’m glad that I chose to spend both occasions with friends and to raise a glass to acknowledge September 24th and to celebrate my birthday a few days later as I think the alternative would have been very bleak but despite sticking two fingers up at melanoma it still refuses to go away.

Time is clearly an extraordinary healer – in my case it has allowed me to re-calibrate and adjust to the new life that I now lead but it doesn’t actually fix everything. I am still living with cancer. I am still undergoing treatment. In between my anniversary and my birthday I had to have my 6th dose of Pembro. Everyone, as always, was perfectly nice but it was a long day – too many attempts to get a cannula in and too many delays and at the end I was pretty exhausted but also the timing was just horrid. Days at the hospital, however amazing the hospital is, are still days that remind me that I really need this treatment and without it the cancer will take over my body as it keeps trying to do. It doesn’t help that I’ll need a CT and MRI before my next treatment and whilst I’m trying not to think too hard about the impending scans and results it all had to be arranged that day and with the arrangements comes the creeping fear.

My birthday too is inevitably bittersweet. It’s hard not to remember the awful birthday back in 2013 when I saw sense and cancelled my planned birthday drinks but still met with friends for breakfast and then went shopping for presents with Andy. My friends struggled not to cry – the news was still very fresh and whilst they looked to me to see how to behave I had no idea what to do. I do remember that with Claire’s amazing help we laughed and resorted to gallows humour which worked for us but I possibly wasn’t entirely appropriate and certainly wasn’t what everyone else was ready for.

I do remember feeling terribly sorry for anyone trying to buy a present for someone who’d been told only 3 days before that they were dying – they did amazingly and I received a lot of notebooks and lovely bath stuff. I also remember the cards – the beautiful thoughtful cards with messages that again must have been hard to write – ‘happy birthday’ suddenly feels less obvious in those circumstances. I have kept all the cards but struggle to read them now as it remains too raw.

That year, Andy and I went shopping to buy me the duffel coat I’d had my eye on. He insisted that I needed a present but all I could think was what a waste – I’ll only get a few months wear out of it. We then popped into a chocolate shop in the hope of finding some delicious little thing that might appeal to me as my appetite was rapidly dwindling. They tried to get us to sign up to their mailing list as apparently we might win a year’s worth of chocolates. Andy and I backed out of the shop and genuinely couldn’t work out whether to laugh or cry – I think we did the former but we probably did both. All of these memories felt like very pushy ghosts this year that just wouldn’t leave me alone. Despite it being four years the events of that September were so traumatic that they cast a very long and painful shadow. I keep trying to escape from it but the reality is that I think it’s probably more realistic to embrace and acknowledge it.

Around this time of year with both the anniversary of my diagnosis and my birthday I think I will always chose to spend time with my loved ones, to raise a glass, to celebrate still being here as it does basically feel right and it feels respectful to all those other melanoma sufferers who haven’t been as lucky as me.

However it doesn’t make the sadness of my situation go away. I really do miss my old life. I miss the normality of looking ahead, of not finding myself welling up at the thought of the milestones that I won’t see. I miss being well, not being paranoid about every twinge and not needing treatment just to stay alive. Mostly I miss the life in which I didn’t know melanoma would kill me.

The change in temperature and light, the end of summer, the boys going back to school makes it impossible not to relive the misery of September 2013. It was easier this year – I was less sad and less anxious but it still wasn’t great. I am genuinely very relieved that it’s over for another year. October can be all about baking and the half-term holiday and Oscar’s 12th birthday. All of these things make me happy. Phew for October.

Goodbye September

4 years – 24th September 2017

Four years at stage IV. Four years into being told I had months not years. Four years of blood tests, cannulas, IV treatments and scans. Four years of never making plans beyond the next scan. Four years of bouts of anxiety and fear that my luck might be about to run out. Four years treading water which occasionally feels more like quicksand. Four years into a terminal diagnosis. Four years is still four astonishing years. Four years of birthdays, anniversaries, celebrations and so many milestones – four unbelievably precious years.

I have celebrated more anniversaries with Andy – our 20 years together in 2014 seemed like a bit of a pipe-dream – hence our bucket list trip to New York – and yet now we’re well past 23 together and have even squeezed in a second trip to America and are very much hoping to go again.

I have seen Oscar grow from a little boy of 8 to a delightful nearly 12 year old who’s currently settling into secondary school and who honestly couldn’t make me more proud. He has already turned into such a lovely boy who forever astonishes me with his creativity, his kindness, his humour and the most ridiculously painful cuddles.

Max too has changed so much in the last four years. Back in 2013 he was only 5 and whilst you could see glimmers of how he might turn out – he already gave the best hugs – I had no way of knowing that at 9 he would overwhelm me with his extraordinary drawing, his ridiculous peskiness and humour and his generally excellent company.

I have in the last four years had countless cups of tea, cakes, lunches, drinks, celebrations, commiserations, adventures as well as – as I always say, far more laughter than tears – with my brilliant group of friends. I have talked ceaselessly and boringly about the experience of living with stage IV cancer and they have gone through the highs and lows and amazingly they have stuck by my side and not simply run for the hills.

Claire and my Mum and my Dad have also been forced to ride the clichéd cancer rollercoaster of the last four years with me. Like me, they have dreaded scans, waited nervously for the results and felt the full force of the misery of the bad ones and the joy of the good ones. It saddens me that my diagnosis, my bastard melanoma, didn’t just change my life but hit all those close to me.

Back in 2013, prior to getting my scan results, I had decided that if by some miracle they were ok, I would take a step back from the melanoma support forum I had joined and would attempt to put a little distance between melanoma and me. This was obviously ridiculously wishful thinking and so Facebook’s brilliant melanomamates group is still very much a part of my life. Through it, not only did I become involved with the MPNE, (the European-wide group that’s taught me about patient advocacy) but I have met countless friends who absolutely understand how I feel as we’re all walking the same treacherous road. These friendships are unbelievably valuable and through attending conferences and workshops I have met many of these amazing people in person. They too have supported me through the highs and lows of the last four years.

I have also lost count of the number of friends from the melanomamates group who have died. It would be too painful and self-destructive to fully engage with everyone on the group – apart from anything there are well over 1000 people on it – but there are always some connections, which just resonate, and those losses are always the most painful. In the last 4 years, there are been far too many women, my age, with similar aged children, who have done everything they possibly can, have sought the best hospitals, have gone through the most gruelling of treatments but in the end have died because melanoma is still a vicious killer. The losses don’t stop being heart-breaking and you don’t become immune but they are a reminder of how incredibly precarious my situation is and how every day should be celebrated. The ups and downs of my treatment over the last 4 years has also bought it home – so many amazingly good scans but still the devastating ones when the trial drugs stopped working, or again earlier this year when my second blast of treatment stopped doing it’s magic. Whilst it gets easier to pick myself back up and forge ahead with a new plan and new treatment it also diminishes the options that are left and that cannot be anything other than frightening.

So, whilst I am not a fan of the term cancerversary (some words should never be merged) I shall be acknowledging and celebrating this one as I did last year and the year before and I shall also be making an embarrassing fuss of turning 41 in a few days – as life is very much too short and you have to squeeze the best bits out of it. Whilst I am joyful to currently be well and responding to treatment I know that it can’t last and all I can do is keep on seeking the best treatment, getting the best advice and keeping my fingers very firmly crossed that I carry on being lucky for as long as possible.

The bonus years that I’ve already had do make me feel very much as though I’m living on borrowed time but regardless of how I label it it’s still been four amazing years spent with all those that I love. I shall always want more, I don’t imagine there will ever be a time when dying will actually feel ok (unless I’m ludicrously old and Claire and I are whizzing round being menaces with ear trumpets in wheelchairs). I think I’ll always want to see what’s just around the corner. With my boys that’s especially marked as I’m always going to want to see how they turn out and the changes that have happened in the last four years are only likely to be amplified in the next four. Obviously it’s not just about the boys – I desperately want to grow old with Andy and the thought of not doing so is pretty unbearable and so I guess, as I do with the boys I have to be a little ostrich-like and not think too hard about what the future might hold. Four years of ‘living with cancer’ has certainly taught me to live in the moment and so for now – that’s all I can do. So today I say a very large bugger off cancer and I shall be raising a glass to all those losses but also to how lucky I have been.

 

 

 

4 years – 24th September 2017

A very good week

What a truly incredible week. After months of anxiety and uncertainty about whether I’d made the right decision about treatment, whether the treatment would work, what would happen if it didn’t – Monday’s good scan results were just brilliant. I’m still revelling in the lovely feeling of knowing that in the very unfair battle between the treatment and the cancer – the treatment, for now, appears to be winning. I’ve said before that I hate the battle analogies as it always suggests that there’s an element of choice or that if you die you’ve not fought hard enough which so clearly isn’t the case. However in relation to the specifics of cancer and treatment I do feel as though the two things are pitted against each other and I’m always at my happiest when the treatment is winning! As well as the obvious – regression in tumours is far superior to progression – it also makes the 3 weekly Pembro infusions with their accompanying fatigue very very worthwhile.

As the news on Monday was so good we were therefore able to book a holiday. For the last 6 years we’ve always had to book very last minute as it’s so hard to make any plans until I know if things are looking good or bad scan-wise. The downside is that there are fewer options and they tend to be more expensive but generally we always find something lovely and this year looks to be no exception. We’re going for a full two weeks – which is a first for us as a family. Miraculously for the first time since 2013 I’ve also managed to find travel insurance that’ll cover the melanoma. When I last tried, countless companies turned me down as they objected to various aspects of my disease (as did I) but it shows how much the landscape of melanoma treatment has progressed and changed. The insurance system recognised Pembrolizumab as a treatment, plus, unlike last time, I’m on an approved treatment rather than a trial, no longer on strong painkillers and am feeling active and well. The process of getting insurance is still pretty grim as you get asked exactly where the cancer has spread to and found myself nervously saying that no it hadn’t yet spread to my brain or my bones but it is lurking in my liver and lymph nodes. It’s a very stark reminder of what a shitty disease cancer is and not an experience I’d like to repeat too often but at least – unlike last time – they actually approved me.

However the most amazing thing this week has been that Oscar, my eldest, finished primary school. This was always going to be a momentous day – all parents must find these milestones quite emotional but as I sat there yesterday in his Leaver’s assembly I really was struck by what an incredible miracle it was for me to be there. Oscar was just starting year 3 when I was told I had months not years and I genuinely couldn’t really imagine seeing him get to the end of that year. Every year since I have been struck by how extraordinary it is that I was there for the end of year 3, year 4, year 5 and now year 6. I couldn’t be more proud of how amazingly he has done. For so much of his school life my cancer has been in the background and yet he has just got on with it. He has never used it as an excuse and has just continued to work hard and behave well – what more could I want. His end of term report was amazing and to top it all off he was one of two to receive a little trophy for their Outstanding Writing ability.

So despite being a little sleepy from treatment and knowing that I’m due 2 more during the holidays I’m feeling very happy and very lucky and very excited about a lovely long summer with my boys. Unless some sneaky side effects kick in I can relax now until the next scan which is a couple of months away so for now all really rather good.

 

A very good week

“A measurable response to treatment”

After all the anxiety and uncertainty of the last couple of months I am very delighted to report that Pembro is working.

My first scan result, since starting this treatment in May, shows that the tumour that was causing all the trouble has reduced from 2.8cm to 1.5cm with some signs of necrosis at the centre. I have never been so happy to be told that I’m a little bit dead inside.

So I get to fully enjoy Oscar’s final few days of primary school (whilst revelling in the miracle that I’m here to see it), we get to book a summer holiday plus I get a lovely long summer hanging out with my boys. I also carry on with 3 weekly treatments and right now life feels very very good and very precious.

“A measurable response to treatment”

How am I……

The problem with my current ‘will it/won’t it’ work limbo, combined with the delightful fatigue that’s accompanying Pembro, is that I have far too much time to think. Thinking is obviously a pretty good thing most of the time but I’ve now spent 6 years thinking rather a lot about cancer and for nearly 4 of those I’ve spent far too much time thinking about dying and trying not to (think about it or do it!).

My most recent treatment has left me feeling utterly wiped out and so I’ve spent a lot of time trying to organise my thoughts in to something useful. On the one hand I am relishing the fact that other than being tired I feel very well and until I’m told otherwise I have to hope that the immunotherapy is doing its job. However, on the other hand, I am wishing away the weeks so I can find out whether Pembro is working its magic. The worst thing is, is that this isn’t the first time I’ve been in the this position – over the last 6 years there have been numerous obstacles in the form of significant scans that leave me mentally paralysed. So, the feeling is very familiar but it’s also very boring. I’m bored of feeling stuck, I’m bored of feeling cross with myself for worrying and then forgiving myself because I’d be an idiot not to, I’m bored of the sound of myself saying ‘yes, feeling fine, hoping it works’ and yet there’s no way round it this is my reality.

However, in relation to answering the ‘how are you?’ question I figured it would be useful to explain a little more about immunotherapy and it might help a little with the confusion and misconceptions. I absolutely cannot do this in anything resembling a scientific way as it’s utterly beyond me but just in terms of the basics, here goes….

I know that for pretty much everyone, other than those who are living it with me on a daily basis, my situation seems very complicated and alien. Cancer and cancer treatment is sadly all too familiar but melanoma and the immunotherapy drugs that accompany it are not. They work differently, they don’t produce the side effects that people associate with cancer treatment but that doesn’t mean they are any less powerful and potentially any less debilitating. At its most basic – immunotherapy drugs attempt to teach your immune system to recognise and deal with the cancer cells itself whereas chemotherapy is basically poison and therefore kills cancer cells but can be fairly indiscriminate and therefore causes other side effects.

This might sounds as though immunotherapy is therefore gentler on your body and to be fair – in my case – it mostly has been but the problem with messing with your immune system is that it can then go into overdrive and start attacking itself. Therefore the potential side effects from immunotherapy can be very serious as the autoimmune reactions can cause colitis, pneumonitis, meningitis, hepatitis, diabetes, endocrine problems and pretty much anything you can think imagine.

The drugs are often on-going if successful rather than the 3 months, 6 months etc associated with chemotherapy and so for me, in the case of Pembro, I shall be having it every 3 weeks for as long as it appears to be working and I’m not producing serious side effects – so really the longer, the better! At the moment this feels pretty daunting but actually, if that first scan shows things are working, then this will be entirely manageable. I think the three doses I’ve had already just feel hard because I simply don’t know if they’re doing any good and it’s frightening to imagine what’s going on inside my poor tumour-y body if it’s not.

The other confusing thing – although I think this not specific to immunotherapy – is that for some people the drugs have worked so well that they now show No Evidence of Disease – or NED (loveliest three letters in the alphabet for a cancer patient). Sadly, this hasn’t happened for me and I have to assume that it just isn’t going to – the best I can hope for is potentially some shrinkage then stable disease. Whilst stable is obviously not as lovely as NED it’s something I’m more than happy to live with.

When I was in on Monday I attempted to quiz my doctor about whether my lack of obvious cancer symptoms and my normal bloods bode well for the upcoming scan and as always he was unable to answer. This is something else I’m bored of although I totally understand why when I ask an impossible question he can’t produce a reply.

The reality is that I know why he can’t give me an answer. My situation is utterly unique. I’ve had 18 months of Ipi/Nivolumab (which is currently the most potentially effective melanoma treatment) and it worked well enough to stabilise my disease and I only stopped the treatment because eventually my immune system went into overdrive and started making me ill. I’ve then had a further 3 months of Ipi/Nivolumab which again stabilised the disease but eventually stopped working because for me, for whatever reason, my immune system can’t seem to learn its lessons and therefore has stopped recognising the cancer cells that the treatment was supposed to teach it to identify. So I’ve had to start more treatment. I don’t know of anyone else who has followed this exact path and so, right now, there are no answers. There are all sorts of possibilities – there’s a chance that last year’s treatment may still actually be doing some good and may be slowing down any potential growth, there’s a chance that my immune system just needed an almighty kick (in the form of pembro) to remind it how to deal with the melanoma cells and there’s a chance that my luck might have run out and I’ll need to seek another treatment option. So really, of course, there’s no way of anyone being able to tell me whether it’s working or not – the only way to know anything is to wait for the damn scan results.

And just in case that wasn’t frustrating enough there’s always a chance the results won’t be clear. I am having the scan early in the hope that if it’s good I’ll be able to book a family holiday and so it might not be totally conclusive. Last year I experienced some pseudo progression in the tumours where they are essentially swollen because of treatment but haven’t actually grown but this was only made clear by a subsequent scan a month later. So unless it’s either dreadful – more tumours/larger tumours, or wonderful – smaller tumours – I may still be a little clueless after results.

Having written all this I don’t want people to think that they can’t ask how I’m doing – but sometimes I think I probably avoid really answering because as you can see it’s complicated and because I’ve been here before (or at least somewhere very similar), at various points over the last 6 years I’m assuming everyone else also finds it very dull. Funnily enough, it seems with cancer, that there are no easy answers. So, please do keep asking but I apologise in advance for my ability to provide a very clear answer.

 

How am I……

Just ticking along…

I feel like I ought to update my blog as I’ve been a little quiet of late but to be honest there’s really not a lot to say. I’m still in limbo. I’ve had two doses of Pembro (third one due next week) and thankfully the second dose didn’t lead to the horrid joint pain I got after the first one so I’m hoping that was just a freaky one-off. I seem to be quite tired for a few days after treatment and I’ve developed another large splodge of vitiligo on my arm but other than that no other side effects so I’m relieved to be getting off quite lightly but also a little nervous that limited side effects might mean the treatment isn’t working….. but it’s probably best not to go there. For now, I’m trying very hard not to worry until I’m told there’s something to worry about but to be honest the fears do keep bubbling up. I’m very frightened that Pembro won’t work for me and that when I have my scan next month it’ll show that all the existing tumours are growing and that there are more. Physically, I feel fine but there are the odd niggles which are just as likely to be paranoia as anything else but it’s hard not to worry that a slight ache in my back is down to tumours in the lymph nodes growing because that’s what happened back in 2013. I also know that these pains could just as easily be the fact that my back is always a bit shit and that some of the exercise I do can lead to various aches and pains and actually that’s almost certainly what’s going on but then I spent the summer of 2013 saying something very similar. However the big difference is that at that time my bloods weren’t ok, I wasn’t eating and I felt dreadful and that’s definitely not how things are right now. The problem is that these thoughts go whizzing around in my head all the time. It’s an endless cycle of – should I worry about the back ache?…. Is it down to the exercise?…. Probably…… Isn’t that what I thought in 2013?…… Ah, but there was loads of other stuff wrong then too…….So, probably ok then……… It’s quite exhausting.

However, despite the simmering paranoia, I am determined that this period between starting treatment and my first scan can’t be wasted. I am doing lots of nice things – catching up with friends, lunches, galleries, lots of reading and generally enjoying my life as a lady of leisure. It was Andy’s birthday last week and like all birthdays and milestones it felt precious and I love that I was spending it with him. I shall never be complacent about how lucky I am that my months have stretched into years and so every occasion deserves to be enjoyed.

 

 

Just ticking along…