Day ONE HUNDRED and something…

I’m not sure where to start. Day +100, perhaps? How much hair can one man wear? [beware: video contains some flashes]

Yep – I hit three figures and had a small, hairy celebration with a few friends, toasting the three-digit milestone and raising money for Macmillan.

One hundred not out!

This came after promising results from my bone marrow biopsy – tempered by the doctors’ decision to do another one (today) to clear up a little lingering uncertainty.

A real beard?

I also had an original (as opposed to bone marrow) birthday, and was spoilt rotten by Mariacristina, who, erm, took me to Brussels for lunch, and to a night at the opera (The Pearl Fishers, with a fabulous Sophie Bevan in the lead role)…

Seriously?!

I tried to return the favour by booking a night in a hotel and dinner at a posh restaurant, both on the Brighton seafront, for our wedding anniversary. Of course, we also had fish and chips on the pier…

GB1 at the Grand

Back in the saddle

Heston says it’s the spiritual home of fish and chips…

My gorgeous newest nephews and niece were christened in Oxford – and I was there, which was fabulous. Unfortunately the trip home wasn’t quite so comfortable, which ruled out the possibility of my joining the rest of the family down in Devon, but I’m sure they’ve been having a terribly boring time anyway.

Straight to the pub, apparently

Hello!

We did at least get Freddie and Kelly over on their way back to Vancouver, though, and took them to Naples (well, Addommè in Streatham) to share pizzas. We can’t wait to see Harriet, Duncan and the twins soon before they go back to Malaysia!

Nearly Napoli

Sharing (pizza) is caring

Meanwhile, Anna’s raised almost £4,000 for Leukaemia & Lymphoma Research through her fantastic achievement in completing the Blenheim Palace triathlon. It would be fabulous if we could nudge her over the £4k mark, so if you haven’t contributed already, or even if you have, do please drop a few pounds in the coffers!

Heroic efforts by Anna and Bath Duck (and Andrew dressed up as George)

It’s a strange time, in many ways. I’ve got through the most dangerous first few months, but am still vulnerable and still having to be careful about crowds in enclosed spaces and other possible sources of infection. My energy levels are variable, and I do get pretty worn out after particularly active days. It’s great to get out more, though, and all in all, life feels good!

The wagon rolls on, and though there’s no map for the road ahead, we’re picking up speed, checking the wheels won’t fall off and looking for the bumps to flatten out.

Next stop: Day +150?!

Day +12: Charity case

#noivciclosporinselfie

I reluctantly decided not to go ahead with launching a #selfiewithmyplatelets campaign, partly because I’m not sure anyone in the country has any money left after donating generously to various cancer charities as a result of the #nomakeupselfie campaign on Facebook. I expect you’ll have heard of it even if you’ve avoided the social network, but the short of it is that it inspired (or reminded) a lot of people to donate to cancer charities – I think Cancer Research alone received £8 million as a result.

I believe it started out as an effort to raise awareness for breast cancer, but some bright spark realised it would be even more worthwhile to add the fundraising aspect, too, and the breadth of its scope expanded to take in charities covering a far wider range of charities. I’m particularly glad about this, not just because my own cancer wasn’t in my breasts, but also because a lot of other cancers with worse survival rates already suffer from less awareness and research funds. The fact a catch-all charity such as Cancer Research benefited hugely is great.

When I posted about the importance of bone marrow donors, I was moved and thrilled that so many people signed up for registries as a result. I’m also overwhelmed by the amount of support we have, and can’t help but feel I should make the most of having so many people’s attention to bring some benefit to the charities I feel have been and will continue to be most important in our fight.

Once I’m in better shape, I’m keen to organise some sort of event or undertake something challenging to raise funds for these charities, in order to give something back. But if my situation has inspired you to make a donation already, these are the charities I would ask you to seriously consider…

The Full Circle Fund
I’ve talked about this before, since when I have enjoyed the relaxation and feelings of wellbeing provided by reflexology and massages. The charity was launched by Suzie, who was working on the Ruth Myles Unit during my first round of fighting leukaemia – at the time we talked a lot about the importance of looking beyond the clinical issues to address the quality of life of patients undergoing treatment for cancer. It’s a small charity, but has grown a lot since then, and I feel a strong personal link. Any extra funds will help them provide wonderful complementary therapies to more patients.

Anthony Nolan
I’ve been extremely lucky to have a fabulous donor (10/10 match, same blood type, etc) for my stem cell transplant. In fact, Anthony Nolan found two other equally good matches, which is amazing. Many others are not so lucky, though, and there are still many people for whom a match cannot be found. Anthony Nolan puts its funds towards getting more people on their register, which enables more patients to undergo life-saving transplants. They recently linked to my blog from their Patients and Family Facebook page, too – hopefully it might help others facing a transplant.

Leukaemia & Lymphoma Research
You may have seen fundraisers running marathons and the suchlike dressed as bananas, which in itself is a great commendation. When Harriet wanted to raise money for a relevant charity the first time I was ill, I suggested LLR on the basis that their research was the most likely to directly help me fight the leukaemia. This time around, having relapsed, I was very grateful for the progress made in leukaemia treatment since then, when the innovative MARALL trial using antibodies got me into remission. As researchers find new treatments and improve current approaches, survival rates will increase.

I would thoroughly approve of contributions to any of these causes!

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Ciclosporin: as welcome as jelly beans

Meanwhile, on Day +12 my ciclosporin dose has now shifted from IV to tablet form – apart from reducing the time I’m attached to a drip, it also means the doctors can check the levels (on Monday, Wednesday, Friday) through my line, rather than having to jab me in the arm. Unfortunately my veins are not what they used to be, so it’s a relief that my arm will no longer resemble a dart board…

Neutrophils are at 1.7, having fallen as expected after I stopped the G-CSF. They may continue to fall, but if they go under 1.0 they’ll give me more G-CSF. I’ll also get a first idea of the chimerism (% donor cells vs my original cells) in a couple of days’ time.

All in all, doctors are pleased, as am I. My energy levels are better than I was expecting, and were it not for the defibrotide I’d probably be going home in the next few days. Even so, I hopefully won’t have long to wait!