Don’t say: “F*!K or Bug*er”!

Today was another lymphocyte infusion day, made possible by Jane’s extra cell donation last week, and because it’s now just a routine procedure we set off in good time without a care in the world. The traffic was really quiet for once, so we arrived in Southampton full of laughs and confidence.

Little did we know that was going to be short lived!

We checked in and, with time in hand, got a coffee from Costa and poked our heads into C6, the ward where I had my transplant a year ago this Friday. This was my first visit since I was ‘released’, and I felt really quite strange and uncertain about it. Sadly, other than Darren (who I love seeing as he was so fab), there was no-one I recognised so we went back to the day ward C7.

After half an hour’s delay Joan was ready for me, and in we went. I immediately sensed something wasn’t quite right as Debbie, one of my consultants, was also there. They wanted to have a good look at my skin as the next phase of the lymphocytes are much larger doses which can trigger GVHD if they don’t tread carefully. So… next came the bad news. Since my last infusion the sun has triggered a bit of GVHD on my arms, my chest, my back, stomach and legs – and they are worried that increasing the dose in one big wallop could cause a worse reaction.

As you can imagine, I was gutted by the news, especially as I have been doing so well and have had no setbacks so far!!

So now I am not allowed to drink again for two weeks, with the exception of a couple on my birthday, I am not allowed in the sun for two weeks, I am not allowed in the pool for two weeks, and I have to keep myself liberally smothered in a steroid cream called Betnovate, then head to toe in suntan lotion on top just in case I go outside to the shops or whatever! After these two weeks, I have to go back for another inspection and lymphocyte top up on the 19th.

In the meantime, everything else looks good for now and I have to keep reminding myself that the things they want me to do is for my own good – no matter how miserable. They don’t want me back in hospital to be treated for GVHD of the skin, gut, liver, mouth etc, etc – anymore than I do, and they want to make sure they have me in a safe and stable condition before our holiday in September. But I have to say – I did feel like I was in the headmistress’s office… all the laughing and joking soon stopped!

I can’t believe it… after everything I have had to put up with!!! Anyway, after a bit of a moan and a grumble, and having had my bloods taken again to make sure there is nothing else sinister going on, we set off to the pharmacy to order more Betnovate, and followed that with a detour into Chichester to a lovely little restaurant called Woodies where we stuffed our faces. 🙂

Day 102…

Thanks for all the support messages on Facebook this morning. They were a welcome distraction as we bombed down the A27 towards Southampton, in pouring rain, for my 3 month bone marrow biopsy. With the pentamidine first this morning was never going down as one of my favourites!

So first up… the pentamidine inhaler. Bloody awful stuff, but vital as it stops PCP which is a particularly nasty strain of pneumonia with a high mortality rate. That knowledge doesn’t make it any more palatable, and after about twenty minutes and a nasty coughing/choking fit I was done. I sauntered nonchalantly back to find Zig in the waiting room, pleased that it was over!

That was followed by a quick interlude for coffee and sweets to take the taste away, then straight in with Kate for the bone marrow sample. I have to say, that is one of the most painful procedures going. If you don’t know what’s involved, imagine lying on your side while someone administers local anaesthetic through a number of smaller needles and then jabs a really big needle into your back and keeps on going until they have pushed it into your pelvic bone!! The gas and air really helps though, and perhaps even more so this time as one of the nurses said it’s like drinking 6 pints of Stella! After nearly four months of no alcohol that was the highlight moment of the day!

I haven’t really had much contact with Kate before as she was Jane’s consultant, but she was fabulous. So knowledgeable and really great at explaining things.

I had noticed a bit of a rash on the side of my hands over the weekend, so asked her about it. Apparently it’s a bit of Graft Versus Host Disease, which set me off into a bit of a panic. But, she was quite pleased because it’s a sign that Jane’s marrow and immunity is taking hold and a by-product of it having a go at me is that it also attacks any leukemic cells that are still swimming around, making the whole possibility of a relapse less likely! So, apparently ‘a little GvHD’ is a good thing, but a lot isn’t. In fact, so much so that if it hadn’t appeared they would have given me more of Jane’s cells to provoke it. Anyway – I now have some creams to apply, which Zig kindly pointed out are used on horses, what a charmer!! Fingers crossed then it will not spread and just go away at some point.

Now we wait for the results of the blood tests from last week and todays bone marrow cultures, all of which I should know next week. But according to Kate this is now the difficult bit where they have to fine tune the procedures, tweaking the mix of this and that, to get the best results. There’s still a long way to go, and a visit to hospital always brings me down to earth with a bump.

Today, whilst chatting to another leukaemia patient in the waiting room, I have heard about someone who was recently diagnosed with Leukaemia but didn’t pass the breathing test so they couldn’t help him. He died last month. Another post-transplant patient wasn’t ‘patient’ and caught a cold which put him back into hospital where there were complications and he is now in a wheelchair, and another chap who had really bad GvHD and had to start all over again. Two years later he is still taking five times as many pills each day as I am and can’t drink alcohol because of the damage the drugs have done to his liver. The remarkable thing is the way he stands there and says, ‘but I’m ok with that – I’m still here!’

But… they are pleased! I am still doing well, I just need to be patient and careful. It’s a bit of a fucker that I really don’t think I will be allowed to have a small toddy at Christmas – but if that’s the price of having my life back I can cope with it!!

Weekly Check Up

Yesterday was check up day back in Southampton, and all seemed to be going well!

They are still pleased with my progress, and Joan (post transplant head nursey bod) managed to deal with a little lump of dried blood that has been hanging about since I had the line put it. It turned out to be a scab that had formed over a small stitch that wasn’t taken out as they couldn’t see it – due to the scab!! Anyway, all sorted much to our delight 🙂

That was followed by a meeting with Debbie Richardson, my consultant, who decided to send me into a bit of a meltdown. (Well, nearly). They have been reducing my Cyclosporine dose steadily which I thought was a good sign. But… as it turns out, it’s because there’s too much of my bone marrow left, and not enough of Jane’s yet. You can imagine my reaction… I already feel sick all the time anyway! Apparently my blood is now 78% Jane’s, and 22% mine – but they are looking for it to be in excess of 90% Jane’s otherwise it’s possible my marrow will take over again. Not what we want – and I was left panicking that I was going to have to suffer the whole bloody process all over again. The other problem is that reducing the cylosporine dose increases the chance of GvHD (Graft versus Host Disease), and I really don’t want that.

Luckily Zig was with me and spotted my panic before it really got a grip, and between him and Debbie they explained that everyone is different and it’s not an exact science. There is a lot of fine tuning to be done. Also no sign of GvHD so fingers are still well and truly crossed. This morning I had the follow up call from Joan about blood counts etc. All still doing brilliantly and nothing has gone into meltdown yet- so far so good – and cyclosporine reduce to 50mg. On which subject…

After my meeting with Debbie I had to go to the pharmacy to pick up last week’s drug order, dropping off this week’s top up prescription on the way. At the pharmacy there was no record of the order, so I had to go back to Debbie to get another prescription. Don’t forget, Southampton General Hospital is massive. At least 100 miles from end to end, or that’s how it seems in my state. Got back to the pharmacy having dropped off the replacement prescription at the Oncology  department, and was given the pills. As I was there I thought I would also get the stuff I had ordered for next week, the oncology people said it had been processed, but once again there was no record of it in the system. FFS!!!

Anyway – today’s another day and I’m feeling a bit better again. I don’t know if it’s the weather, but I am not getting as cold as I was so I have popped on a lovely little Cath Kidston number!

kath kidston