Monthly Archives: March 2012

People are nice…

Right then – day two of the blog, day four of the chemo cycle.

Still no major side effects – although my teeth feel a little bit loose. Not sure if that’s due to chemo or not going to a dentist since we first moved to Kent 5 years ago. With all the cancer stuff that’s happened over that time, fillings and whether I need my wisdom teeth out has never seemed that much of a priority. On the plus side, by staying away from a dentist for all that time I have maintained my record of not ever having any fillings (see, I told you this blog would also contain good news!).

So, to pick up where I left off yesterday, I wanted to write a little about the extraordinary generosity and support we have received over the last month from family, friends, colleagues, employers, and even complete strangers. We have been genuinely moved, surprised and humbled by the lengths that people have gone to on our behalf. And to know that all these people are out there, doing what they can for you, really provides a great boost to my motivation to beat this.

Our families have been amazing – driving me to hospital when I didn’t feel like the train, or babysitting Saskia while Sally and I go to hospital; helping us keep on top of the housework, filling our cupboards, taking Saskia off our hands to give us a break, paying hospital travel expenses, helping with DIY, offering us holidays, helping to whip the garden into shape for summer after a winter of neglect, and much, much more.

We have received countless cards and messages of support and hope from family and friends, as well as donations, gifts, prayers and masses said for our cause, distance Reiki performed, and yet more. People have been researching my illness on the internet, and sending us any relevant information that they find.

Friends have also been looking after Saskia while we go on hospital trips. We’ve been incredibly kindly given money to go on holiday, given loan of a flat in Faversham for our visitors to stay in, and had Tesco deliveries sent to our door, among other things.

My employers have signed me off work to concentrate on my treatment and family, and are being incredibly supportive and understanding.

Sally’s employers have, at very short notice, allowed her to extend her maternity period to the full year, and have offered to pay the last three months at the statutory maternity rate (usually unpaid). Her colleagues have been dropping round goody boxes of food, magazines, toiletries, etc, and even raising money for us – the company MD has given up smoking and is donating the money he saves; another colleague is catching the bus to work and donating petrol money saved; several others are doing a sponsored swim for us. The husband of another colleague (a professional driving instructor) is giving Sally driving lessons free of charge to get her back on the road. Plus we have a long list of volunteers for help around the house, babysitting, etc.

I even had a complete stranger on the train home from my first chemo session the other day give me a pep talk after overhearing that I had just been for treatment.

This outpouring of support in all its different forms has been incredible – it has been amazing to witness people pulling together to help us out. The warmth and support we have felt has shed an awful lot of light into what would otherwise be an incredibly dark time, and in no small part has helped us to pick ourselves up from the bad news and stay positive. And it has meant that thankfully we have not had to worry too much about the financial impact of our situation – which is a massive relief.

So this post is a massive, massive thank you to everyone for all you have done – the above is by no means an exhaustive list, and not intended as a list of credits. But you all know who you are – and you have our sincerest gratitude.

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The beginning of a journey…

Welcome.

I never really thought of myself as someone who would keep a blog – to be honest I couldn’t think that my life or opinions were interesting enough to warrant documenting for the world to read. I could have ranted endlessly about the Daily Mail, but that would have got boring after a while (for you I imagine, probably not for me).

But in the last month or so things have suddenly got a lot more interesting, but unfortunately not in a good way – I have been diagnosed again with cancer.

Some of you may know my history – almost 5 years ago I was found to have a malignant melanoma (a form of skin cancer) on my left shoulder. I was 27 years old, otherwise generally healthy, and had never been near a sunbed in my life. The odd bit of sunburn as a teenager while prancing round Cornwall trying to become a surfer, but nothing major.

It was surgically removed, and after a lot of debate (for about six months) between doctors as to whether it had spread, I was given the ‘all clear’ and sent home.

Two years later it was detected in a single lymph node under my left arm. I was promptly back in for surgery, and had all the lymph nodes from my left armpit removed. Some more scans later, and I was again given the ‘all clear’ (albeit qualified with ‘as far as we can tell’).

The three years since then have been characterised by worries about recurrence, trips to various hospitals for scans and biopsies on various innocent lumps and bumps, and wondering whether I was becoming paranoid and beginning to annoy the doctors with questions about lumps on my testicles.

So in January this year, when I started to develop some lower back pain, I worried about cancer. But I told myself I was being paranoid, and put it down to having a new baby – lifting her up, hauling prams in and out of cars, bending over doing her bath and changing nappies, etc. So much so that I nearly didn’t mention it at my six monthly check up at the Royal Marsden (for those who don’t know, generally ace cancer hospital in London – one of the best places in the country).

In the end I did mention it, just in passing I hoped…

“Bad back? No, that won’t be cancer, probably something like a new baby or something”.

“Great, thanks Doc, see you in another six months”.

Unfortunately the conversation didn’t go quite like that. An MRI on my back and a CT of the rest of me later, and in late February I was told it was back, and had brought friends to play this time – on my spine, in my liver, lungs and spleen (what does a spleen actually even do?).

This news obviously came as a massive blow, and the weeks since then have been a real roller-coaster (and I don’t like roller-coasters!). I won’t bore you with all the details, but in short I had just picked myself up from the knock of the initial news, when I got more bad news – I couldn’t go on a clinical trial of a promising new drug as my melanoma didn’t have the right gene mutation.

Ok, pick myself up and get positive again, there’s another trial I can go on. Except that a week later (last week) I was the told I can’t go on that one either due to the location of my cancer – another blow to pick myself up from. The only treatment option available to me (at present) is the standard chemotherapy treatment for melanoma.

So that’s where we are. I started chemotherapy treatment Monday (two days ago). One silver lining of being on the standard treatment is that it is apparently relatively well tolerated. The infusion of the chemo only took about an hour, into a cannula in my arm. And other than a slightly foggy feeling and a few hot flushes on the train home, since then I have felt fine. No nausea, tiredness, sickness (they give you anti-sickness meds). There might be other side effects to come later in the cycle (each infusion and the following weeks leading up to the next infusion is known as a ‘cycle’), but so far so good.

Then in three weeks I am back in for my second infusion of chemo . Three weeks on from then I have another scan. If the chemo is working then I carry on for another four cycles – if not then I come off it and we try something else.

To be honest after all the trips I have had to London in the last month or so for scans and results it’s just nice to know that I don’t have to go back for three weeks.

So there we are – cancer has motivated me to become a ‘blogger’. Why?

Well in all the turmoil and upheaval of the last month it’s been difficult just keeping on top of everyday life – Saskia, the house, etc (fortunately I am currently signed off work). In the course of all that I have been relaying the news to various people – but I knew there were many good friends who I had not come across in day-to-day life who had no idea what was going on. Hence, the ‘blog. I figured this would be a great way to disseminate news and keep people up to date, without me having to say / type the same thing again and again – and for people to follow my progress, leave messages of support, etc (or abuse if you feel that way inclined).

Don’t worry, I’ll try not to make it all about cancer. I’ll put in nice stuff as well – news and photos of Saskia, other photos, and just general news of what we have been up to. The cancer is the motivator for starting this blog, but will not be the sole focus. It’s important to focus on the positive as well.

Speaking of positive – despite all the recent bad news and stress of the last month I am remaining fully positive that I will beat this. As far as I can see that’s the only way to fight this battle. Not long after the first set of bad news, I came down with a chest infection. Then a few days after the bad news about not being able to go on the first trial, I had several attacks (spread over four days) days of an excruciating stomach pain, lasting hours at a time – so bad that the first time I ended up going to A&E in an ambulance at 4am in the morning. The doctor in A&E, my GP and my gastro nurse put these stomach pains down to excess stress due to the cancer diagnosis.

While horrible at the time, these experiences were a clear demonstration and reminder of the effect that the mind and mental state can have on physical well being. If I get down and depressed my body will give me even more crap to deal with. So I figure I can turn this to my advantage – by keeping a positive attitude I minimise both mental and physical stress, hopefully minimise chemo side effects, and put myself in the best possible state of mind to beat this.

There is every reason to stay positive – there seems to be nothing to be gained by sinking into negative thoughts.

Right, I think I will end this post here. I have (believe it or not!) more to write. I haven’t yet touched on the amazing support and generosity we have received from family and friends in the last month.

But it’s late, and I’ve written a lot today, so I will continue tomorrow.

Bye for now.

P.S. This blog is also heavily inspired by a similar blog kept by a guy called Ezra in New York, who has been fighting colon cancer (hopefully, it looks successfully). It would be wrong of me not to credit him for his inspiration, so for anyone who wants to take a look, I have copied the link below. It’s a great read, and he is a wonderfully honest and funny writer (as well as good photographer, bike builder, and cook). So I would fully recommend it. You might also pick up some decent recipes! Thanks to Dan Morse for directing me to his blog.

Link > http://www.fastboycycles.com/teachingcancertocry/

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Filed under Battle with Melanoma