Well I am now nearly 2 months since my transplant and how it seems a lifetime away….a bit like childbirth really….you forget the worst things – THANK GOD!
I feel like I can see a light at the end of the tunnel for the first time in ages. Even when I have bad days (which I certainly do – both from an emotional and a physical perspective), I can put them into some kind of perspective now and that really helps me emotionally. I am learning to look back at where I was weeks before, and how little I could do, versus how much more I can do now, and I find that this helps me to be so much more positive and gives me much more hope on what can come.
We had a really busy weekend but it was lovely. Friday saw our school having a night at the local park. We hire a marquis from the village (who do a fete on the Saturday) and have an evening of drink and food where everyone just takes picnic blankets and chairs and sits around chatting. The kids are there too and love the idea of being there in the dark with their glow sticks till 10pm!!
On Saturday we had a joint party for Rebecca and Sam. Sam’s birthday was at the end of August and Rebecca’s isn’t until October, but we decided pre-transplant that in order to take the pressure off me (and believe me I feel the pressure to perform for kids birthdays!!) that we would give them a joint party in the middle of both birthdays. What a great decision. We took 32 kids (!) to a soft play area where they did everything….party bags, cakes, food….the whole lot. Result. No stress before, no stress during and no stress after. I wish we could afford to do it every year, but it was well worth every penny for this year. After that, we took the grandparents and godparents that had come with us to the village fete for the afternoon and then back to ours. Sunday was church and pottering around the house.
Monday I cooked all day, forgetting to take my daily sleep….now why I thought this was a good idea after such a busy weekend, I’m not quite sure, but I decided that making bread and two separate meals for the kids and Nick and I was much more important….and god did I suffer by the evening when I fell asleep on the sofa at 6pm, ate a bite of dinner and was back in bed by 9pm!!! Will I ever learn…..probably not! But I did have a good time doing all of it and what was great was that the recovery time was less than it had been two weeks previously.
I’ve seen a couple of really old school friends over the past two days too and that was lovely. Time to chill and just talk has been great…one day, the conversation won’t be about me and my transplant…I hope it won’t be about me and my cancer too, but somehow I wonder if this is inevitable nowadays. It is hard for me to not mention anything to do with it as I live and breathe it, and I suppose it is hard for others not to talk about it in case it seems uncaring. But for now I don’t mind it and hope my friends don’t either.
Any other news. My appointment with the pain specialist was postponed….by letter….last week. I have to wait till the 20th now which is frustrating as the neuropathy in my toes is no better, and I sometimes wonder if it is getting worse. I hope not. People keep asking me what peripheral neuropathy is……well, the official definition is that it is the term used to describe damage to the nerves that make up the peripheral nervous system. Basically my nerves have been damaged by the chemo called Velcade that I was on pre-transplant. For some people this damage is temporary and this is normally the case with velcade. But occassionally it can be permanent damage. It is apparently too early to say for definite with me, but it isn’t looking great given that I am already 3 months down the line. In terms of how it feels..my feet always have a mild burning sensation on the soles and toes. When it gets worse (generally in the evenings) it feels like either I have frost bite, or like someone has broken my toes!! Not that I have ever had broken toes, but that is what I imagine it would feel like. I also have a permanent achy feeling in my calves. A bit like what you might experience when you have done exercise for the first time in months. It hurts to go down stairs or downhill and I look like an 80 year old lady when I get up and down from the sofa!!
So as you can imagine, I was pretty upset when my appointment was postponed. I hope desperately that the doctor can come up with some suggestions next week when I see him. I can’t imagine living with this pain forever as it does impact on our lives…I can’t walk long distances and my legs feel tired fairly quickly. Even things like the kids sitting on my lap can hurt at times so the sooner I can sort it out the better.
Right, I’m off now…..I’ll be posting a guest blog in the next day or so….watch this space!! And if anyone else ever feels the need to contribute, please let me know!