Well another year has gone, I’d like to say it was one of the best, but it has probably been one of the worst for me. It’s been difficult coping with all of the treatment and side effects. When people see me they say your looking well, I didn’t look too well when I was on all of the tablets with my face swelling and rash or putting on a lot of weight and feeling like crap not being able to do anything because of having no energy at all. None of these are problems with the Myeloma just part of the treatment to get ready for the stem cell transplant. Now of course it may have been all a waste of time. Having to wait these next two weeks is going to be stressful for me. I’d like to think that by some miracle my para-protein has gone down to almost nothing, but it looka highly unlikely.
Every minute that I am waiting around either at home or out in queues in traffic or even just looking around town and then not finding what your looking for, makes me start to think about how much time I have left. I’m evaluating, is this something that I want to be doing, waiting around, don’t these people know that I might not have that long to live, get out of my way, serve me quickly – oh wait, I forgot I look ok! Perhaps people with Myeloma who aren’t showing any symptoms should wear a sign or a T-Shirt with ‘whatever it is your doing, do it quickly I don’t have much time left’, maybe my ‘Kiss Me Quick – I have cancer’ sea-side hats aren’t such a bad idea.
I was talking with Charito about the help that cancer patients get, or the lack of it. It started because when I went for my last appointment I had to park in the ordinary car park, as my pass needed renewing – it normally lasts three months, however when I asked the receptionist at the Oncology I was told that I should have handed that back in (and get my deposit back of £20) as it is only valid while I’m having treatment. So I still have cancer and still have to go for appointments, but unless I’m having treatment (chemo in any form or tablets) I have to pay for the privilege of going to the oncology. Don’t forget I had just been told that it looks unlikely that my stem cell transplant had worked and I would need to have more treatment – whoo hoo free parking, ok that actually wasn’t the first thing that I thought! So I had to pay the £2.50 car park but I haven’t given my card back as I will probably be needing more treatment (woo hoo free parking – have I said that?), I could start to put all of the £2.50 in a pot to save it up.
Talking of saving up money, back to talking about the help cancer patients get. Charito was asking why another person with myeloma that we know seems to get help. This person walks with a stick, but gets mobility and is classed as disabled. Not that I want to have more problems, but it wont be until I don’t look ok and have trouble walking that I will get any help. So now not only do I have to consider what treatment I’m going to be having, but also about selling the car or returning it as I have another year to pay on it as well as what do I do with the house, I might have to sell. I negotiated lower payments for a year on the house and reduced payments on the car. I’m hoping that I can cope at work so that I can continue to pay them. So when considering what treatment I will have next, I need to consider if I can work at the same time.
Lots of things to consider this year and of course this all depends on my next appointment. Roll on the next two weeks. No wait I don’t want to rush things I don’t have that much time left … or do I …. Oh the joys of myeloma. You will never get told how long you can expect as everyone is different. My doctor has said about five years from diagnosis depending on how successful the treatment is. Looks like I’m screwed then as I have had one year and that wasn’t very successful. If I go for an allogenic stem cell transplant (bone marrow from sibling if there is a match), it will take nearly a year again to get ready and a year to recover. So there is another two years gone, three in total of the expected 5 and if that doesn’t work, try something else. I wonder what would happen if I didn’t do anything. Don’t forget I look OK when not having treatment. Do I just wait for my bones crumble, how long would that take, or until my kidneys give up.
If only myeloma was measured by how well you LOOK! – So if you know me and you have read this, please don’t tell me how well I am looking, you might just end up with a smack in the mouth, maybe not, my hand might crumble!
Happy New Year everyone lets hope it’s better than last. :)