Happy and sad

I planned to write a straightforwardly happy post today as yesterday’s scan news was good and amazingly my tumours remain stable, my bloods aren’t doing anything wild and other than the fatigue all is good with me. I am, as always, phenomenally relieved and woke up this morning feeling very happy and very lucky.

This all still stands – I am very lucky but sadly nothing makes that clearer than discovering, as I just did, that another of my friends from the hospital died early this morning. Back at the beginning of  2016, when I embarked on my second course of Ipi/Nivolumab, I met another patient who was 3 months ahead of me in terms of that particular treatment and so had completed the combo drugs and had moved onto the Nivolumab monotherapy. We both received our treatment on Mondays and so would often bump into each other and catch up at the hospital. At that time my situation seemed more worrying as I was on my second go at immunotherapy, my tumours were hanging around being sinister on and near my liver and there was no way of knowing whether the re-challenge would work. Her tumours weren’t on any of her organs but had taken up residence in her lymph nodes but they appeared to be slow growing and although were causing a degree of pain and a lot of discomfort they didn’t, at that time, represent such a threat.

Move forward a few months and I got the amazing news that the re-challenge had been successful and the tumours were smaller and eventually stabilised but she was not so lucky – her attempts to keep the disease under control lead to two years of difficult treatment, much stress and anxiety and eventually the news today that she had died.

I’m not writing this for sympathy that belongs to her husband, family and close friends but just as a reminder that life is incredibly fragile and life with cancer especially so. Sometimes being in the best place, with the best doctors and pursuing the best treatment proves to not be enough and sometimes this bastard of a disease behaves in utterly unpredictable ways.

So tonight I shall be lighting another candle and when I next go to the Marsden I shall do what I do on every visit and I shall think of the friends that I’ve met there who in the end were not as lucky and I shall be adding a new name to that ever growing list.

I really did want to write a happy post as somewhat ridiculously I don’t want my ‘cancer blog’ to be all gloom and doom and despite tonight’s sadness I am basically feeling very lucky and happy to know that all is currently stable and for now I’m safe but it doesn’t stop the sadness and the reality of the disease changing the narrative.

However, its January, its another whole new year, we’ve got a short break booked for half-term and I’m hoping to go to Brussels in March for the next MPNE conference so there’s good and fun stuff on the horizon. So when I go to sleep tonight that’s what I shall hold on to and I shall try and think of other stuff to add to the list in order that I make the very best of the lucky life I have.

img_5144-e1516126637242.jpg

Advertisements
Happy and sad

Pre-scan nerves……again….

I’m sure I bore everyone stupid by going on about the pre-scan nerves but despite being used to the pattern of regular scans the absolute blinding terror is still capable of hitting me like a truck.

For the last two years I’ve tended to have my scan on a Monday and then my results the following Monday. This is one of the weirder changes since having had to move my care from the NHS to private in order to access the drugs – previously, under the NHS I’d have scan in the morning and my results the same afternoon!

Anyway, I’ve got used to this pattern but due to the Christmas holidays and trying to figure out timings of treatments etc this time round my scan is due this Thursday and I’ll be getting my results next Monday. I am totally aware that it’s only a week to results day and yet, because I’m still determinedly living in my Christmas bubble, I’d actually managed to not descend into fully pre-scan panic. Today I was taking advantage of Max’s super long Christmas holiday by having a day out with him and we were talking about something that was happening next Monday when it clicked that I’d be getting results that day. For a moment, I genuinely felt as though someone had dropped me from great height or thrown something very heavy at me. I felt a horrible combination of sick, faint and tearful – it was the most extraordinary physical reaction that left me momentarily speechless.

I obviously didn’t want to dump all this on Max so instead we swiftly moved on and I quickly recovered but the terror has officially descended…. It didn’t stop us having a really lovely day out together but it has reinforced my sense that over time the wait for scan results gets worse and worse every time.

Pre-scan nerves……again….

Goodbye 2017….little bit scared about what comes next….

I realise that my poor blog gets pretty neglected when everything is fine. The urge to write, the urge to explain and to untangle the mess in my head is directly related to how all consuming my ‘adventure with melanoma’ is at the time. So when I go quiet and forget to post it’s generally because everything is ticking along pretty well and that’s certainly been the case for the last month or two. The good results of my last scan back in October have allowed me to just be as normal as I ever can be. The hospital appointments continue, the fatigue from Pembro continues but so does life and Christmas and the run up to Christmas has been very lovely. I baked and baked and baked throughout November and December and loved not just the baking but also the lists and the planning and the sense of purpose. It’s been a long time since working out a baking schedule interrupted my sleep rather than the paralysing fear about what the damn cancer was up to and it felt really normal and really good. As I’ve often said in this blog – normal is very underrated. I really miss it and on the occasions when I feel close to it again I’ve learnt to embrace and acknowledge it.

At the end of November I had my third trip to the MPNE workshop in Krusenberg, Sweden. The purpose of the workshop was to apply business models to patient advocacy and to develop strategies for lean advocacy. The work was really interesting and productive the hotel, as always was lovely – beautiful setting and seriously delicious food, but the best bit for me is the people. It was really lovely to see my friends and it just feels very right and very reassuring to be around other people who also live melanoma. They understand without needing to explain that being diagnosed with melanoma and particularly being diagnosed with stage IV melanoma is something you think about every minute of every day but being around other people in the same situation makes me feel totally normal and that’s a very good feeling.

As well as the baking and the trip to Sweden the last few weeks have also been filled with preparing for Christmas and I really do love it. I feel phenomenally lucky and grateful to be experiencing my 5th Christmas after my stage IV diagnosis and having Andy and the boys around makes this time of year particularly special. We’ve managed to achieve a perfect balance of catching up with friends and lots of time, just the four of us, being lazy and hanging out together. It’s been a very perfect Christmas and it finished with a very perfect New Years Eve with good friends.

So despite today being January 1st I’m determined to stay in the Christmas bubble until at least the 4th when Andy and Oscar return to work and school. January is not my favourite month at the best of times but this one will be throwing a scan my way in just a couple of weeks and that’s a pretty daunting way to start a new year. Once the scan is done and depending upon the results I need to make some plans as at the moment my diary is very clear and I feel quite frightened about what to expect from 2018. As always, I know how extraordinary it is that I’m here at the start of yet another ‘impossible’ year and I’m obviously extremely grateful but living in a permanent state of limbo is pretty challenging. So before I descend in to doom and January gloom instead I shall think about the whole load of lovely things that filled 2017 and how incredibly happy I am to have been there to experience them. A very happy and healthy 2018 to everyone.

Goodbye 2017….little bit scared about what comes next….

What not to say to someone with cancer….

The title of this post is a little misleading as it’s not a question I’m planning to answer but it is one that I’ve read various articles about and have thought about on and off since my cancer diagnosis.

My main problem with the question and the articles it that they suggest that a cancer diagnosis turns everyone into the same person – somehow cancer makes us patients all think the same, react the same, possess a desire to be treated the same. The reality is that people with cancer are still just people and as we all know people are all very different.

My other problem is that for me – the thing that I’ve found hardest to handle is when people don’t say anything and if we fill the world with articles and debates about what one should and shouldn’t say then people are even more intimidated and even more likely to shy away from any conversation. Generally what you end up with is a list of things you shouldn’t say but nothing very helpful about what you should say. By the time you’ve remembered not to suggest you ‘know how someone feels’, or that you ‘know someone else with that cancer and, oh, whoops they died’, or one of my favourites – ‘there are worse cancers’ – the chances are you’re so tongue-tied that it’s easier to say nothing.

Since my diagnosis, there have been moments when people have said things that have upset me, but actually more often I’ve been apologised to for some terribly ‘insensitive’ remark that I hadn’t even registered! The things that have upset me are mostly not one off comments or questions it’s more likely that a conversation has travelled into a discussion of an impossibly far off future, which I’m fully aware I’m unlikely to see. These moments tend to sneak up on me – a recent memorable one was finding myself sitting in Oscar’s new secondary school and welling up at the sight of their film about all the children getting their GSCSE results and just feeling struck with how damn shit it is that this is something I’m unlikely to see. Now, this is just real life – it’s not avoidable, it’s no one’s fault it’s just the reality of the rubbish hand I’ve been dealt and so there’s no avoiding these moments and no list that will make them go away.

I can only write about what I would and wouldn’t mind someone saying to me. Personally, I’d always prefer that someone say something than nothing. In my case that’s meant listening politely to ideas and thoughts that I’m absolutely not going to indulge in but I have no problem with people suggesting. I’m not going to just eat raw veg, totally avoid sugar, live only on lemons or wear a copper bracelet to keep the cancer away and my response is usually to acknowledge the argument but point out that so far the fabulously toxic immunotherapy drugs have worked wonders for me so not planning to make any changes. However, I’ve never been bothered by the suggestions. I’m not easily upset and offended by not fully thought out remarks and on the whole assume that people probably mean well.

Depending on where I am with treatment, what my latest scans have shown and whether I’m heading in or out of a new crisis with my melanoma the ‘how are you’ question can be complicated but really it’s just a social nicety and surely I can choose how honestly I answer it at any given time? So, really I stick with what I’ve always said and that it’s better to say something than nothing and I’d hate to think that people are too scared to say anything for fear of putting their foot in it.

 

 

What not to say to someone with cancer….

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.

 

Guinea Pig Calendar Company

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