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!

Brussels & the value of 3 extra months….

Last Thursday I had the odd experience of travelling to Brussels with a suitcase crammed full of bags of Salted Caramel Florenteenies and a small rucksack with 4 days worth of clothes! The reason – the MPNE (Melanoma Patient Network Europe) conference. I had been asked to provide treats for all the attendees and thank-you gifts for the helpers and speakers plus to do a short talk putting forward the patient’s view of why 3 additional months of life is worth something.

As always, the conference was beautifully organised – fascinating speakers, great discussions and some really lovely friends. One of the odd silver-linings of melanoma has been the friends I’ve made along the way and the conference is always a good time to catch up with them and to enjoy the easy short-hand of other people who just understand what it’s like to be a melanoma patient.

The value of having patient talks at these conferences is they serve as a real reminder to the other stakeholders and influencers as to what the point of it all is – the patient is central to the ethos of MPNE. If the work being done doesn’t ultimately improve the situation for patients then it’s the wrong work. With this in mind – I put together my talk and ended up writing something that was far more personal and in the end emotional than I’d intended but it turned out that when I began to think about the value of 3 months it was a subject I felt passionate about. Instead of attempting to paraphrase – I’ll do as I did after the Bristol conference and here it is – word for word.

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3 months are not worth it you say?

Back in January I attended a workshop organised by NICE focusing on patient engagement. NICE stands for The National Institute for Health and Care Excellence. It is an independent UK-based organisation which decides which drugs and treatments are made available on the NHS in England and Wales. Until this point I’d always thought of it as a bit of a baddy as so much of the press we see focuses on the drugs that don’t get approved.

I still have my reservations but it was a fascinating day and very useful to learn a little more about the ethos of NICE and how much they try and do the best for patients. During the afternoon they ran a session in which we were presented with a case study and asked, in small groups, to decide whether we would or wouldn’t approve the case study drug.

The drug was for a cancer caused by exposure to asbestos (mesothelioma). It generally presents in people aged about 60 to 80 and because it’s slow growing – it often isn’t diagnosed until it’s fairly advanced. A drug was developed, that in conjunction with chemotherapy, could potentially provide an additional 3 months of life and for some of the fitter patients that could even extend to an extra 5 months. As is so often the case, the drug was expensive and far exceeded the usual NICE allowance – it also came with some side effects. There were other considerations – this is a cancer this ought to be eradicated within about 15 years simply because the generation who were exposed to asbestos are dying out and so if it were approved it would be for a finite period.

So, we, the audience were asked whether we’d approve the drug. To me it was a total no-brainer. The side effects weren’t really that bad – nothing compared to Ipi/Nivolumab and it could offer 3 possibly 5 months of life.

My feelings were that

  • It was an entirely hypothetical situation we didn’t have to balance books and deal with the implications of what approving this drug might mean for other drugs we were just being asked whether 3 months was worth something.
  • The side effects really didn’t sound that bad and in my opinion the ideal would be to present the information to the patient and let them decide whether they were willing to take the risk
  • Finally – I come back to the fact that 3 months is 3 months!

To my surprise the rest of my group didn’t automatically agree. What was utterly black and white to me came in various shades of grey to them. There were several arguments.

  • The cost issue – this was not a cost effective use of health spending.
  • The ethical argument – it is wrong to foist treatments on to patients who are dying and treatment by it’s very nature would negatively effect quality of life – and
  • 3 months really wasn’t very long.

Eventually we as a group did vote in favour of approval but were then told NICE had in fact turned the drug down and it was only approved after a subsequent appeal. The basis of the appeal was related to the role of societal responsibility, as it was a cancer caused by people unknowingly being exposed to a toxic material.

The experience led me to think a lot about what I consider to be the misconceptions about the value of 3 months.

Firstly, 3 months offers hope and anyone with a terminal diagnosis knows how essential hope can be both for patients and for their families. It’s what stops you taking to your bed and giving up and what makes you get up every morning. That extra 3 months could provide just enough time for a new drug or a new trial and those 3 months might then extend to 6 months, a year, who knows. The role of immunotherapy within melanoma treatment has totally altered the treatment landscape and it’s still too early to know it’s full potential.

One of the main arguments raised during the discussion was that it was simply wrong to push additional treatments on to sick and vulnerable patients and that treatment inevitably impacted poorly on quality of life. The potential side effects were seen as a serious issue.

I objected to this on several grounds.

  • Surely this is a decision a patient – when presented with the facts – is capable of making. There seems to exist a belief that if you have only 3 months to live you somehow also lack the mental capability to make rational decisions about your treatment.
  • I think that people ‘on the outside’ assume that dying of cancer, without intervention, is somehow less dreadful than receiving cancer treatment. Whilst some treatments do come with hideous side effects so does cancer. Surely this is a decision a patient should be presented with?

A major part of the argument is obviously financial. What’s the point on spending what is seen as a disproportionate amount on end of life care. A view that’s much easier to maintain when your life is not under threat and when you conjure up images of end of life you imagine people in their 80s or 90s coming to a more natural end. Thankfully there are some provisions put in place to help balance the discrepancies in cost benefit frameworks with regard to end of life care.

In the end the workshop left me feeling frustrated that people who just don’t understand make these decisions. Until you find yourself in a situation when it is very likely you have very little time left – it’s impossible to know how you’ll feel and how valuable time will become.

I read a really extraordinary book recently by Mary Elizabeth Williams called – A Series of Catastrophes and Miracles. It’s a true account of a woman in New York diagnosed with melanoma who embarked, by a stroke of luck, on the phase one ipi/Nivolumab trial in 2011. She was in her mid 40s and has two young girls.

Just prior to starting treatment she says: –

“I want to stay. Don’t make me leave. Not now, not yet. The school year has barely started and I’m scared I won’t see the end of it. Will I see the cherry blossoms in the Botanic Garden in the spring? Will I get to Christmas? Will I make it even to my birthday? Everything I thought about the futility of treatments that might only give people who have a fatal disease just a few more months – everything I believed about the pointlessness of it – right now, I take it back. I may well have only a few months, but I want those months very much. If I could do something to get a few more months on top of that, I’d take them too.”

This resonated very strongly with me and back in September 2013 – when my world was turned upside down by being told that I had months not years I found myself making bargains in my head – looking to milestones that were a month, two months ahead and hoping, that if I wasn’t too greedy – if I didn’t look too far ahead then perhaps I’d be allowed another Christmas with my family. I remember very clearly fearing that I wouldn’t see my boys reach the end of their current school years, that I wouldn’t see my youngest turn 6, or reach my 20 year anniversary with my husband – both milestones due in the Spring of 2014.

Due to a combination of being proactive about my care and getting lucky with treatment, I have seen those dates and many more but for that time, that 3 months from late September 2013 until Christmas 2013 I really did believe that might be all I would get.

It gave me time to sort out finances, make lists, discuss what I wanted for my children, what I did and didn’t want in terms of my funeral. The time was so precious and I was clearly very ill but during that period I spent lots of time with my friends and my family and most especially with my husband and my boys. Looking back at the pictures of that period – I can see lots of really precious and happy moments –

Just days after the diagnosis my sister and I walked the Shine night time marathon. It was an extraordinarily emotional night but it was an absolute highlight in my life.

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She and I also I established our reputation at the hospital for being extremely silly. My first treatment was on 31st October and due to the trial – the nurses had to take comedy amounts of blood. My sister and I became quite convinced it was some kind of Halloween prank.

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In mid-November – my husband and my boys and I were treated to a lovely weekend away in a beautiful hotel in Suffolk. That weekend I hit my lowest point as the car journey left me feeling utterly broken and I was barely able to make it up to my room. However, the combination of a cocktail of painkillers, and what I believe to be the turning point when the treatment was just beginning to work, the next couple of days were extremely special – lovely walks, family meals and precious time with my boys.

And finally, I genuinely thought that Christmas was likely to be my last but it couldn’t have been more perfect or more beautiful.

I have obviously been extremely lucky as my 3 months turned into 6 months, a year, two years and now right now it’s been 3 and half years but I believe passionately that even if 3 months is just 3 months – that is not something that should easily dismissed – that alone is phenomenally valuable, precious and important.

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Brussels & the value of 3 extra months….

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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Good news

Happy to report that my latest scan results show that once again, the dastardly tumours remain stable. I had the scan on Monday and was expecting to go and get the results the following Monday but due to the planned tube strike next week I’d emailed my nurse to let her know that I might run late for my appointment. I really didn’t want to receive results over the phone so was hoping to just shift the appointment later in the day but about an hour after I sent the email – my nurse called. Thankfully she quickly told me that the CT report was good but it didn’t stop that horrible rush of fear that came when I realised who the call was from. So, although I didn’t get the results the way I wanted them, I couldn’t be more pleased with them!

Like all scans this one came with it’s own specific set of anxieties. Timing-wise it’s a year since I started my second round of ipi/nivoluamb and so 9 months since my last treatment. Last time round the treatment I had kept everything ticking along for 10 months between finishing treatment and progression so I’m fast approaching that milestone and it’d be a lie to say that that isn’t a worry for me. I guess that each scan I have takes me further away from my last ipi/nivo infusion and so each one will seem a little more scary as my situation will inevitably feel a little more precarious.

However, that’s not today’s worry. Today is a happy day and not only am I hugely relieved that everything is still stable it’s also really lovely not to have the fear hanging over me this weekend as I’d expected. Instead I can continue planning and baking for my pop-up shop next weekend. I can start making some plans for half-term with the boys….. I could possibly even look ahead to Easter as I don’t think I’m due to have another scan until the end of April.

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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…

Christmas and 2016

Feeling very happy to be approaching yet another  Christmas. Since having had the boys I’ve so totally embraced the ‘magic of christmas’ feeling. They love it, they get totally overexcited and that excitement is wonderfully contagious so this has become one of my favourite times of year. As well as their excitement I love that everyone is on holiday even if only for a day or two and I just really enjoy the mixture of lazy days hanging around at home with the family as well as eating lots of delicious food and catching up with friends. This, amazingly, is my fourth Christmas since the stage IV diagnosis  and whilst I don’t like the reason, I do enjoy that because complacency was obliterated I get real pleasure from just the little things.

It seems that every year is likely to be full of ups and downs and 2016 has been a very dramatic one. There have been a seemingly endless number of celebrity deaths and on the national and international front the world appears to veering off in really horrific directions. On top of that it’s been an incredibly rocky year for many of those around me and many of my friends are desperate to say goodbye to 2016. However, slightly shamefully, I have to admit to that fact that this year has been really rather special to me.

Andy and I sat in a very lovely hotel at the very beginning of this year and we dared to have a conversation about the year ahead. It was a big year for both of us with his 50th in June and my 40th in September. On top of that, I was feeling very well and dared to utter the words that if everything was still OK by September I would seriously think about re-launching my business. My plan was to do it on a smaller scale than previously but ultimately I was feeling ready to embrace a bit of normality – to work, to make plans.

Well, this was obviously a mistake. Every time I’ve made some kind of commitment since my cancer diagnosis in 2011 things have gone a little bit wrong. In May 2013 I signed up to walk the Shine Marathon – by the time the marathon came round at the end of September I’d just learnt that all my developing symptoms added up to a Stage IV diagnosis. At the end of January 2015 I was feeling fit and well and totally used to the fortnightly trial treatments and so decided to set myself the goal of running a 10k in June. By June I’d been taken off the trial because of developing colitis type symptoms, had a brief stay in hospital and was in treatment limbo. So the curse of making plans once again took hold a few days after Andy’s and my discussion about the year ahead. My scan on 7th January revealed that one of the tumours was growing again and I ended up in a period of horrid stress and anxiety having to get the trial unblinded, making treatment decisions and being once again reminded that cancer will not just sit on the backburner.

However despite the crappy setback right at the start of the year I got lucky and was able to have a drug re-challenge. I had four infusions over 3 months and other than a slight blip at the beginning of June (tumour flare) I sailed through the treatment with very  limited side effects and it worked. The tumours are currently marginally smaller than they were this time last year and they’re stable and have been since the early summer. It was obviously a difficult time. Treatment, however smoothly it goes, is traumatic and despite how incredibly lucky I was about side effects there is still a level of fatigue that plagued me until a month or two ago. I only every really recognise the extent of it once it lifts and I realise that for me, lethargy is an absolute side effect and not my natural state of being.

So despite my fear of making any kind of commitment actually what I have learned is that it’s ok. Making plans hasn’t caused any of the rubbish things to happen – they’d have happened anyway but at least this way I can say that I walked a marathon (pretty speedily) and ran a 10k.  Having finally learned this we decided to press ahead with plans to extend our kitchen. When I committed to it I had no idea whether the treatment would work and how I’d be but regardless it felt important to make a normal plan and the hope was (and thankfully it proved to be the case) that we’d have a lovely new kitchen at the end of it.

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So, when I look back over the last year I cannot help but be struck by the huge number of really wonderful moments. Both Andy’s and my big birthdays were really very lovely – memorable, full of amazing friends – really special days. As well as that Andy and I had a truly perfect trip to New York in June and the four of us had an equally perfect fortnight in Crete in August. I feel very selfish dwelling on all the frivolous fun bits of the year but there have been so many and for me – reaching 40 was a very perfect moment. I love it. I tell everyone regardless of the nature of the conversation. I embrace the wrinkles and grey hairs and honestly cannot wait to get older.

I also realised that in that cancer is not about to disappear I need to embrace the really odd silver-linings it has brought to me. It’s made me say yes far more than no. So when asked to talk at a European melanoma conference in Belgium I said yes. I said yes again in June when I agreed to share my melanoma story at the first UK patient conference and on top of that I’ve done three television interviews – one of which I’m really quite proud of. The previous version of me would have shied away from anything like that and so I have to credit cancer with that one. I’ve also been on amazing trips to both Leuven and Krusenberg as part of the Melanoma Patients Network Europe and both of those trips have inspired me as well as allowing me to mix with a truly wonderful collection of people.

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There have been other important milestones too that have added a touch of magic to the year. Some are cancer-related – in May it was 5 years since my original diagnosis and in September it was 3 years since the stage IV diagnosis but as well as these – which were acknowledged and in the case of the latter celebrated with a marvelous dinner – there have been others too. Max turned 8, Oscar turned 11 and I was more than well enough to put in his secondary school application (unimaginable 3 years ago). In April, Andy and I celebrated 22 years together and 16 years of marriage. Every single one of these days was marked in some way or other and I’m beyond grateful for them all.

So really, however selfish it sounds, 2016 has been a very special year for me.

Christmas and 2016

September & October

This is just a mini-post as felt that after the nerves of last month I ought to just check in and say how relieved I am that September is once again over and what a totally amazing time I had on my 3 year anniversary, my birthday and my totally over the top birthday party. All three days turned out to be pretty special and I’ve managed to stretch my birthday celebrations several weeks into October too so have been unbelievably spoiled.

Looking back at last month I realise that the anxiety clearly manifested itself in very poor sleep, nightmares when I did sleep and not very much in the way of appetite. So I’m delighted to add that literally since the 27th Sep – the day I turned 40 – my sleep is back on track and my appetite is back where it should be. Phew to another September being done and a very huge thank you to all those who made it so incredibly special.

September & October