Todays update…
Hi everyone,
I haven’t posted in a while as the last few weeks have been particularly tough going. I think I’ve lost quite a few brain cells and I don’t seem capable of thinking clearly. I thought there was nothing to the radiotherapy until week 4, but since then it’s been bad, and I’ve been mostly in hibernation mode. I’m still exhausted now, barely seeing daylight.
For those who’ve donated to my fundraiser since my last update: thank you all so much. I’ve surpassed the halfway mark, which I thought was impossible back in October when I set up the GoFundMe page. I really, really appreciate your support. I said it before, but it is a blessing to have my eyes opened to how many lovely, kind people there are about. I hope to be able to repay it one day, somehow.
I’ve had quite a few people contact me about DcVax since my story went public. Shockingly, people are having to try and scramble together a quarter of a million quid to fund a treatment for a disease that has been neglected by the UK government.
I’ve been incredibly fortunate to have the support I’ve received: from Elis, the Socially Distant Sports Bar, the Swans, the Welsh football community at large and my friends and family. I’ve been trying to share info I’ve found with people who are in an equally desperate situation, to talk about costs and alternative treatments that aren’t on the NHS. It’s exhausting, as a person with cancer, to have to fight for and find out these things for yourself. I hope the shareholders at DcVax HQ are delighted with the free publicity they’ve got — maybe they will chuck in a few free vaccines for my friends in need? Doubtful.
I would describe the last few weeks as ‘mixed’ — lots of ups and downs.
I briefly awoke from my slumber for the ‘Kick Cancer’s Head In’ football match on 21 Jan, which was a great day and — despite losing 5-2 — being ‘not the worst manager’ Angel Rangel has ever had is an honour that will live with me forever. A huge thank you to Angel, my mates, Ryan and the Alternative Wales team for braving some of the worst conditions imaginable to help support my fundraiser! The day raised an incredible £3k, which I need to add to my GoFundMe total.
After we’d kicked cancer’s head in for 90 minutes, the following morning I was back at Velindre to start my second round of chemotherapy to kick it some more. The temozolomide dosage is double what I was on during radiotherapy, but I seemed to tolerate it reasonably well, and, in my wisdom, decided I was OK to attend an acoustic matinee performance by The Libertines at Clwb Ifor Bach last Saturday. Silly move…chemo wipes out your immune system, and in a packed Clwb I managed to pick up a chest infection that has left me bed-bound since. Lesson learned. Regardless of the cancer, I’ve realised I’ve reached an age where daytime shows and in bed by ten is right up my Cally Road.
I say the last few weeks have been ‘mixed’ because, despite being surrounded by my family and friends, getting over halfway(!!) to my fundraising target, starting oxygen therapy and trying to be proactive in scheduling consultations with various neuro-oncologists to see what additional treatment options there are available, I’ve had to formally decline the job I was offered at Barnardo’s. I was due to start the job in October and turning it down has been one of the toughest decisions I’ve had to make. It was a great opportunity and in a sector I’m really passionate about working in. It was supposed to be my ‘new start’. I’d left my previous job where I spent 9 years, and was looking forward to a new challenge. In the interim, I had a stroke and developed incurable cancer. Life!
Despite never having actually done a day’s work for them, I’ve got a really good relationship with my would-have-been boss, Shelby. I spoke to her this morning — we’re going to stay in touch and if any opportunities come up that I could get involved with then she’ll give me a shout. So that’s something. One of the things about this disease is that I don’t know if I’m going to die in six months, a year, or in 5 to 10 years (very unlikely based on the statistics). If it does transpire that I’m 10 years still kicking, I’ll be cursing myself for not taking the job, but extremely thankful to be alive still (even if totally skint). It’s a catch-22 classic. If I had a crystal ball, I don’t even know if I’d have the strength to look, so I think, for now, the best thing for me is to focus on my health and see how I go.
I’m hoping the antibiotics kick in by the weekend because this Saturday, I’ve been invited by the lovely and brilliant, Sophie Davis at Swansea City to attend the Swans v Plymouth match. I met Sophie in Rotterdam watching Wales. It’s weird how life unravels and 18 months later I found myself being interviewed by Sophie in the Swans’ home changing room about having brain cancer and trying to raise £250,000 to extend my life. The Plymouth game is Swansea’s dedicated Maggie’s Cancer Charity match, so I was talking to Sophie about how I accessed their support at Velindre, and how kind and helpful the staff are. I’m proud that the club has partnered with Maggie’s. The service they offer to cancer patients and their families at their centres is hard to believe unless you’ve experienced it first-hand. They’re so caring, compassionate and helpful during the scariest time of your life. More of this kind of thing in football, please.
The GOOD NEWS is I’ve had a date for the first jab: 14 February. Valentine’s Day. I’m going to tie in visiting King’s College Hospital with a few trips to the London Welsh Centre to watch the 6 Nations matches. I don’t tend to go to the rugby, but going to LWC for the 6 Nations has become an annual pilgrimage — and as so many of my mates are in London, it’s the perfect place to watch it. The London Welsh Centre has very kindly offered to host a raffle to support my fundraiser. There are some great prizes, including the chance to watch and dine with the Welsh rugby squad at the Vale Resort, tickets to the sold-out Green Man Music Festival and dinner at the acclaimed 2-star Ynyshir restaurant. More info on this, other prizes and how to enter in the coming days
Thank you again for your support.
Stay beautiful
Matt x
