16. The only way is up!

Dearest everyone, thank you so much for all your chanting and healing energy. I went to have my blood test today and my white cell count has gone from 0.9 to 48. In 3 days. Yes. How absolutely totally incredible is that? Stephen (cynical Virgo – no!), did wonder whether they got the decimal point in the wrong place last week, but I’m happy either way! The doctor did say that levels can “really shoot up” with the GCSF injections but even she was surprised at quite how much mine had. She of course has no idea of the enormous amount of healing that has been coming my way, and I wouldn’t expect her to even begin to understand it. She seems nice though, so maybe on the ward we will get around to having a bit more of a chat and I can test the water a bit. But the main thing is that it is well above ‘excellent’ and for that I thank you all from the bottom of my heart. I need my platelets to be a bit better populated so if you have the odd moment that is the next point of focus, but I am on now track to start my next cycle of chemo next Thursday 28th.

I had a totally mad piece of head-wear arrive in the post today from the lovely Judy (who has been commenting on the blog from her holiday in Egypt), that I opened and tried on when on a high from the hospital visit. I think it is for a bellydancing outfit, and I share it here so you can see just how happy I am at the blood test result:

I bumped into Dot on my way into the ward, and she was very sweetly telling me about the right kind of diet for neutropenia (which I’m not any more, yay!), which was very interesting. Given that people with low white blood cell count are supposed to have hot, well-cooked food it does somewhat question the wisdom of taking such people into hospital. Yes, it does protect them from the bugs and germs of the outside world, but how can hospital food possibly help them get better? Hmmm. I hear Jamie Oliver was involved with hospital food a while back, I wonder what came of that. I might email him to find out.

I must admit I have had a couple of days where I was on the verge of calling the ward to see whether I should go in. Having an itchy throat and sinus headache is very bad news when you are neutropenic, but for me the prospect of the lack of sleep and horrendous food really turned it into a life or death situation. I think Stephen was very worried, but I promised that I would be sensible, and if things got too bad I would call them. I really, really wanted to stay home with a passion, and, thankfully, I managed to. I wanted to have home cooked, good quality food most of all, and sleep with no interruptions a very close second. It made me think again about how important it is to feel nourished on many levels when we are ill, and how none of that is addressed in hospital. For instance, Dot’s heart is in the right place, but I think she is slightly mis-guided in her intentions, and somehow the patients have been shoe-horned into her schedule rather than the care being patient-led. That sounds like a really good, but unlikely, management phrase, doesn’t it? It has just occurred to me that there are patient questionnaires all around the hospital so I think I might try to get hold of one of them and see exactly what they are asking about. I really, really doubt whether they ask, ‘Please score the quality of hospital food on a scale of 1 to 5….’ I would so love that one. However, I will see whether there is any other way of giving feedback. I doubt I can do much about the food, but I was talking about the constant interruptions and early wake-ups with the nurse taking my blood this morning, and she said I should tell someone about it. Then she said she would too as it was really important. Her words were, ‘there is no way anyone can get better in hospital with all the early morning routines and interruptions’. Wow. As I am in hospital next week I am going to try at least to see why they disturb us at such silly times and request whether some flexibility is possible. I think I already know the answer, but I am willing to bet that patients don’t dare say anything so it has never seriously been considered before – I am willing to run the gauntlet! There is something so debilitating about being in hospital even if you are feeling well – I mentioned  previously about changing into day clothes every morning so I don’t feel so powerless, so I will wait for the appropriate moment when I am fully clad for the day. I might have my special pink belly dancing hat on just to disarm them :-)

The pink theme is really gaining momentum, and it really only started out as a bit of a joke with my two boys some time ago – I had to do something to counteract the massive amount of testosterone belting around, so I started very slowly with the odd item and now it has grown to this! Last time I was in I had towels, flannel, toilet bag, soap holder, slippers, duvet cover, slippers, pyjamas, all in black and pink or just pink, plus the lovely knitted hats, Fenella Flamingo (pics below)…and I have since gained a pink wineglass and now Judy’s pink hat.

And the medics seem to love it. It also makes me feel stronger too. I always place Fenella (whom I have had for about a year now – she isn’t just a hospital flamingo) behind me so that they have to look at her when they are talking to me – you can see that she is really stern and will take no prisoners. I like to think that with all the pink influence the doctors and nurses feel  they are coming into my area – call me deluded but I think it helps. Just to see them crack into a smile, or try to stay focussed on me when they are also looking at a pink fluffy flamingo is priceless.

I want to say that I think I am getting truly amazing care at the hospital, and in no way should my comments be seen as a criticism of the wonderful people who are working so hard to make me well. What I am hoping is that I can inject a little more fun and life into proceedings while I am there, as we all know how important it is to stay positive. Talking of being positive, feelings can run very high in the waiting room. Stephen and I were talking to a lovely old couple (80 and 84) who were there for the husband’s treatment, the last of very many sessions during which he had had several remissions and relapses and had survived to this point, smile intact. I did see them as being inspirational, and although  they appeared to be reciting a whole list of treatments, they were actually being very positive. Another lady present didn’t see it as so, maybe she wasn’t listening with both ears. She was called to see the doctor, and before going out, turned towards us, and then the elderly couple, and asserted, ” it isn’t always like this. It doesn’t always come back. I’ve been clear for seven months. Positive mental attitude, that is everything. It doesn’t have to come back”. Then she stomped out. I was horrified. I don’t think I would like to live with her version of a positive mental attitude. Granted our new-found friends were slightly intrusive and I was beginning to miss the book I was reading, but I was angry that they had been so attacked by a stranger when they had been through so much, and they were simply sharing their story with us. People change when they are given a diagnosis for a life threatening disease, and they cope with it in different ways. This woman was obviously fighting it with every fibre of her being, but it did make me wonder, where is the love and lightness in her soul? And in terms of cancer, I’m sorry, but seven months isn’t a long remission, especially when compared to what this gentleman had been through. How will she cope if it comes back?  Her so-called ‘positive mental attitude’ had actually rocked four people, and not in a good way. My heart goes out to her.

Be happy and well!

Margaret xx