24. Feeling Good

It’s Friday, a Bank holiday weekend, and I’m feeling good! There’s a weird, yellow thing in the sky too, which I hear tell is the sun :-)

I was feeling good anyway but I am feeling especially good now as my (lovely) consultant has just phoned with the MRI scan results. I hadn’t written a blog this week as there seemed to be so much happening and I was constantly in a state of ‘wait-and-see’. So much so that I have just had to delete the paragraph I had written because as of 5 minutes ago when my (lovely) consultant rang it is out of date and I have no idea how to relate the last week as it is all out of context now. A bit like being asked to write a history essay and go backwards and forwards at the same time. Never my strongest point. I’ll try not to be too confusing but please do bear with me. My (brilliant) consultant wanted a mid-term MRI scan so he could see whether I needed to have Cycle 6 or not. Cycle 6 is horrible, 3 days of chemo that are long and very hard on the body. If there were no obvious signs left of the cancer then his thinking is that I have a break of about a month after Cycle 5, which is scheduled for next Wednesday, then go into the stem cell transplant on 11^th June. More of that in a minute. Just to relieve your no doubt heightened state of anticipation, he called (Friday night at 7.00 – impressive huh?) to tell me that the scan was clear, no sign of anything abnormal. So we can go ahead with Plan A.

Just before all you lovely people start a-whooping with joy that I am cured, I just want to do a very Moon-Pluto in Virgo kind of thing and put this in context. An MRI scan only looks at your body at a tissue/organs kind of level, and certainly at that level it has shown there are no extra weird lumpy bits. Mantle Cell lymphoma is strange in that it has the smallest molecules of any of the cancers known to sciencekind. The only way to ascertain whether there is a single molecule left in my system (which is all it would take to start the whole shooting match off again) is to have a PET scan, which is the one where I have to run around all irradiated avoiding pregnant ladies and children. I’m not having one of those just now as my poor system is already rather debilitated and the last thing it needs is irradiating – that could cause a completely different kind of cancer and I do think I have enough to deal with as things stand. I will have a PET scan at the very end of all this. So where are we, exactly? It would be tempting to say that I am in remission, but sitting here with no hair and having lost one-and-a-half-stone in weight with another cycle of chemo scheduled for next week I think that is a bit premature. There is still a very long way to go, and the stem cell transplant is a huge part of that.

You know it is really funny, I was thinking about writing the blog as we drove home from work tonight – I have managed 3 whole days in work this week, I am so proud – and the whole focus has changed just because of that phone call. I was going to write about my day in Ward 11 on Wednesday. I had to go in as a day patient so I could get the MRI scan done early (otherwise it was the end of May), which basically meant I go in and sit next to a bed and pretend that I am staying in order to buck the system. Don’t knock it, it works. The rather bizarre bit was that when my time came for the MRI scan a porter turned up with a wheelchair. Apparently it is against Health and Safety regs for a perfectly ambulatory (just learnt that NHS phrase!) and able in-patient to walk themselves anywhere for an appointment – you have to be pushed in a wheelchair. I was beyond embarrassed. I find it hard enough to be in a wheelchair when I actually need it so you can imagine how this felt. We shared some really bad taste jokes about wheelchair races and I offered to push him when his tea break was due, but the nicest thing was when we were in the lift. Several people got in with us, and amongst them was a very lovely looking lady, slim, elegant, long hair nicely scrunched up. Anyone remember the Boddingtons advert? This lady looked really classy – she opened her mouth and it was pure Essex. I can say that as I am an Essex girl myself :-). “Ar long are you in fur luv?” I replied, big smile on my face, that it was just for the day for a scan, and that I could walk, really, it was just the Health and Safety regs. She beamed back at me and said “You’re doin great luv. I was in fur free munfs – lawst me hur jus like you, an look at me nah” touching her lovely hair. For international readers who might not understand that bit, she was saying that she, too lost her hair after 3 months of chemo as an inpatient and she was looking pretty good now! I have to say that heartened me considerably.

One of the most interesting things about this illness is the way my thought processes are changing. The biggest impact, out of all the things I have read, is the Buddhist practice of mindfulness. (See Book Blog for a couple of the books I love.) It is dramatically changing the way I look at each moment, and thus the way I view the world. My world, too. Yes, I hated being in the wheelchair, and the whole scenario, as someone who had driven herself to the hospital and walked into the ward, was completely ridiculous, but if all of that hadn’t happened, I wouldn’t have bumped into the lovely lady in the lift. I am – finally, some would say, my dear mum included – learning to live in the now, instead of the ‘what could be’. Yes, there are lots of things, and people, I would change if I could. But I can’t. All I can do is deal with what arises right now, and I am starting to enjoy that process. Every moment is becoming a lot more interesting and exciting as I am emotionally and intellectually present, something that is quite new for me; instead of racing ahead to future opportunities and possibilities, or acting out possible scenarios in my head, I am becoming grounded – albeit very slowly – in the present moment, and you would not believe how good that feels.

But I do have to go back to my day on Ward 11 on Wednesday. I pitched up at the nurses’ station early in the morning to find out which bed I wasn’t going to occupy in order to get my scan. I really can’t believe this. There are 16 beds on this ward. Five of them are in isolation, two of which are in my most hated ward. Where was I? Iso 2. I HATE it there. Have I got “I love Iso” written on my forehead? One of my major problems with the stem cell transplant, when I will be in for about four weeks, is that due to the low white cell count I am likely to be in an isolation bed. These beds are in a wing that faces North and have a separate supply of air via a unit which belts out freezing cold air from the vent above the bed. It is not pleasant. I actually find it really depressing, and it was horrible just being there for the day. There is no fresh air, so the constant smell of antiseptic and the other noxious chemicals used to cleanse everything in sight really start to get to me and I find that by the end of my stay – whether it is hours or days, I am gasping for fresh air. I have the distinct feeling that everybody hates it there. Cancer patients, by their very nature, keep coming back, and I am beginning to suspect that the people who don’t shout loud enough end up in Iso 1 and 2. I am extremely troubled by the prospect of a four week stay in hospital. I have bonded well with Dot but she can’t change the totally revolting food. I really like the nursing staff who go out of their way to help. But I can’t do without fresh air. I don’t care how much the Iso wards protect you, I really can’t manage four weeks on air conditioned and recycled air. So I might just have to become somebody who can’t cope with the cold. I think that might just do it as the Isolation rooms are all chilly. I realise this is all too much detail and it could be incredibly boring for some of you, in which case I do apologise, but I feel some forward planning is necessary. Living in the now is totally wonderful, but I can’t help feeling a little help is needed when it comes to stem cell transplant time. There is so much more to say but it is Friday night and the weekend starts here! I will be back with more soon.

Wishing you all a warm and sunny weekend

Margaret xxxxx