January pondering…

When I talk about how I am I always feel like I have to preface anything I say with – obviously I’m very lucky and grateful to still be alive and so, in fitting with this that’s where I begin. I am unbelievably relieved that it’s January 2017 and despite being given months to live in September 2013 I am very much still here. However, as the weeks have turned into months and eventually turned into years I am finding it increasingly difficult to express how strange my life has become. Again, I feel the need to make it clear that I’m really not complaining – any kind of a life is a damn sight better than the bleak alternative that I feared back in 2013 and as it happens – for a number of reasons my life right now is really pretty wonderful.

It turns out that I have a really wonderful family and friends. Obviously I already knew that that was the case but there’s nothing like contemplating your own death to reinforce the importance of friendship, love and kindness in your life.

It goes without saying that the other major factor in my current happy life is that I’ve been very lucky with my treatment. As I’ve explained in previous posts essentially I have made sure that I was in the right place at the right time and was informed enough to strive for the best possible treatments available as and when I’ve needed them. On top of this, for whatever reason, I’ve responded well, with limited side effects and the end result is that right now in many ways I’m fitter and stronger than I’ve ever been.

So all in all – everything looks pretty rosy and really it is. However, part of the rosiness is down to the fact that I’ve got used to my situation. Time really is a great healer and it is possible to recalibrate and to get used to really quite extraordinary situations. For the two years that I lived with stage III melanoma I was absolutely terrified of it progressing. I was so frightened that I genuinely couldn’t even think about it and when the fear would seep in and I’d think about a life in which I wouldn’t be there for my boys I’d become frozen with fear. So, when I was given the news that the cancer had progressed it was really was the most horrific day of my life and yet that day, I called my parents, I contacted my friends and I still went and collected my boys from school. It turns out that you can’t stay frozen with fear you have to just get on and by getting on, before you know it, you slowly adjust to the new normal. I can see that day-to-day this is a good thing. It is far better that I get up each day and carry on and having the boys means that over the last three years I’ve never simply taken to my bed, hidden under my duvet and refused to come out. They need routine, they need me to do the school run, to prepare their meals and simply to just be there. When I was at my most ill back in autumn 2013 I was barely managing to do anything other than those very basic things but it was enough to make things seem at least partially normal and this was good for the boys and in the end I think it was probably good for me too. Playing at being normal did appear to help me adjust to the new situation and helped with the general recalibration that was required.

One of the many tragedies of melanoma is that I have had to some extent to get used to people dying. Not just random strangers but people who’ve I chatted to, or messaged or who’s stories have resonated and touched me – people who have become my friends. For me there are far more upsides than downsides to being on a melanoma support forum, from making friends through the MPNE network and chatting to other patients when at The Marsden but it exposes you to the realities of melanoma. I may currently be very lucky but I couldn’t even begin to count those people who haven’t and melanoma is a deadly killer. I obviously haven’t really got used to it as that would be impossible – every death is heart breaking but you have to find some positivity in it all – the best I’ve managed to do so far is that it’s galvanised me to be more proactive, to be brave and to advocate more strongly the importance of the patient voice. I mourn every one of the wonderful people I’ve met who’ve died. On occasion I find myself lighting a candle at home (and very occasionally in a church) and going through a growing list of other patients who have died. I will never get used to it but it fails to shock me as much as it used to – it is part of the reality and normality of cancer.

However, what I’ve come to realise is that my view of normal is very warped. It was brought home to me very sharply when I was asked to do the BBC interview back in November last year. The subject of the discussion was related to the lack of support young adults who are diagnosed with cancer receive. Firstly, I was at pains to point out that I felt I was distinctly passed being a young adult as after all I’m 40 and very happy about it. It turns out that young adult in this context means those diagnosed between the ages of about 25 and 39 so with a diagnosis at 34 I did actually fit the criteria.

Secondly I actually feel like I’ve had a lot of support. As I’ve said countless times I have a really extraordinary network of people around me who have worked miracles in keeping me sane since the original diagnosis back in 2011 and who have gone above and beyond the call of friendship since the stage IV diagnosis in 2013. On top of that – I’ve been proactive about seeking the best medical care and finding a cancer centre which offers both counselling and complimentary therapies. About every 4-6 weeks I drive over to Barnet where I spend the first hour talking to my lovely counsellor and generally clearing my head and my second hour having the best reflexology I’ve every had – it allows me to properly switch of like nothing else ever has. Just in case this isn’t enough of an indulgence the outing is finished by the purchase of quite the most delicious raspberry jam doughnut from the local Barnet bakery. So I do genuinely feel like I am well supported.

Finally I wasn’t totally sure that I felt that a sub-group ‘young adults’ had it worse than any other age group. It was on this particular point that the preparation for the program – the conversations I had before and after it – that I changed my mind. Being diagnosed with cancer at any age is shit. There’s no way round it – it’s bloody awful. It’s a frightening and unpredictable disease and every form of it comes with it’s own horrors. There shouldn’t be a hierarchy about who it’s worst for but I do feel that this age group of 25-39 face a very specific set of problems that aren’t currently properly addressed. Most people during their mid to late 20s and 30s are thinking about careers, relationships, children, travel and yet when you’re diagnosed with cancer and particularly if you’re told it’s terminal you find yourself having to put the normal elements of life on hold. It’s not the time to put down roots and buy a property, it’s not the time to start or continue building a family, it puts pressure on relationships and it impacts on your career.

I was very lucky, Andy and I have been together since I was 17 and so by the time I was first diagnosed I’d already spent half my life with him and by the time it progressed we were heading towards our 20 year anniversary. The one thing I was very certain about was that he and I are right together and I was confident that he wasn’t going anywhere in a hurry. I was also blessed with already having two lovely little boys. Again, I was also lucky that we had already bought our house and were very happily settled there and I was working part-time running my baking business.

However, with the exception of being in a very good solid and loving relationship everything else was hugely impacted by my cancer diagnosis. There was never a third baby – I wasn’t willing to risk it when stage III and any lingering possibility went out of the window when I progressed to stage IV. One of the many joys of agreeing to treatment is you have to sign forms promising you won’t get pregnant and then having regular blood tests to prove that you aren’t. Thankfully, we were already blessed by having our two boys but at 34 – that was lucky. Many of my friends have started their families later than that or have gone on to have more children beyond their early 30s. I hasten to add at this point that in the long run two was exactly right for us as a family so in a peculiar way it has worked out very well. However for those aged between 25 and 39 it is a massive consideration and one that isn’t properly addressed when you find yourself dealing with a cancer diagnosis. In some awful way you’re supposed to be so grateful that you’re undergoing treatment and hopefully surviving that issues around fertility and children are not seen as priorities.

Also, bringing up young children when you’re dealing with cancer is inevitably difficult. There is advice available but day-to-day I have found myself facing countless hurdles that ‘normal’ people – those without cancer just wouldn’t see in the same way. It wasn’t just financial issues that had to be put in order upon my diagnosis I also found myself wanting to iron out all the potential issues that I foresaw my boys confronting. I wanted to give them every bit of advice I could imagine they might need, I wanted to stop any bad habits and ultimately to shape them into the perfect young men I hope they become. This is all good and well but they were 5 and 7 and that’s totally impossible and equally remains impossible now they’re at the grand old ages of 8 and 11 – you cannot condense parenting into a short period of time regardless of how long you think you’re likely to life. Day to day it has made life hard and it’s made me feel very separate and often quite isolated. I was never able to join in with conversations about the potential horror of what our children will be like as teenagers as for me – that’s still a pipedream. I have however hit many more milestones with my boys than I had expected and each one has added poignancy because it was so nearly not the case.

Despite the cancer diagnosis, the surgeries and treatment I underwent when stage III, I was able to continue running my baking business. It wasn’t always easy but it was do-able and as I worked for myself I didn’t have to negotiate days off for appointments so from that point of view I was fortunate. However the downside of working for yourself is that when you’re not feeling 100% or when a treatment has ended up taking an entire day rather than a couple of hours there’s no one else to step in and help. Equally, if I didn’t actually do the baking then I didn’t make any money and so any time off was expensive. When I began to suffer from the symptoms of the cancer progression but before it had been confirmed I really struggled to stay on top of my work as I was phenomenally tired and lethargic but again, when you work for yourself you just have to get on with it. It wasn’t until the progression was confirmed that I finally had to admit defeat and close my business. I’ve written about this before and so won’t go into it in detail here but needless to say it was another loss during a very difficult time. What I’ve found difficult since is realising how left behind I sometimes feel. I have a really hatred of small talk and one of my most hated questions is being asked what I do. My stock answer now is to say that I used to run a baking business and then desperately hope I don’t get asked when or why I stopped. (You can imagine how awkward it is if the conversation does go in that direction). I watch the various highs and lows of my friend’s careers and whilst I know I was never going to do some of the many extraordinary things they do – I’ve never been terribly ambitious – I do feel left behind.

When I’m feeling well, as I do at the moment, I’ve contemplated the idea of doing a course or something that will provide some kind of academic or job satisfaction but actually I have learnt that because of the unpredictable nature of this disease I get very stressed by being committed to anything in terms of time. I know that all it takes is bad scan and then I’m right back to hospital appointments, decisions and treatment. This doesn’t mean that I’ve put my life totally on hold. I do make some plans. We go on holidays and I’ve managed to do a few pop-up shops over the last 3 years but I am loathe to commit myself to anything in the future as I just don’t quite trust what the future has in store and have learnt that I’d rather avoid the stress that comes hand in hand with making really concrete plans.

The other issue that comes of being a ‘young adult’ is that if you do have commitments you can’t exactly swan off on the amazing bucket-list holidays that are associated with a terminal diagnosis. On the one hand – I can’t just take my boys out of school, Andy can’t just not turn up to work – and on the other travel insurance is an absolute nightmare. It turns out that I’m pretty uninsurable. Either the insurance companies don’t like where my tumours are, they didn’t like that I was on a trial, they didn’t like that I’d been told the cancer was terminal – to be fair they didn’t like all the things that I didn’t like but that doesn’t help me get insurance and the cancer is unreliable enough to make it too risky to go very far without. However, despite this sounding like an almighty whinge I actually don’t mind the fact that we can’t run away on an adventure as it turns out that what I like most in the world, what I really can’t get enough of is the utterly mundane – it’s hanging out with my family and my friends so the lack of big adventures isn’t a hardship.

I started writing this weeks ago and I’m sure when I began I had some kind of endpoint in mind but for the life of me I cannot remember what it was. It seems that really I’m just confused. I’m happy to be alive (obviously), I’m in a very good place at the moment (although scan pending so who knows), I have adjusted to my new reality. However, cancer has sent me on a completely path than that which I’d imagined, that whilst there are some strange silver linings in amongst it all in the end cancer really stinks.



January pondering…