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Saturday, 1 January 2011

Another year, but at least I look OK

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. :)


  1. I feel the need to use an expression of dear Amanda's. Bollocksy Bollocks. You are quite right that people say you look ok when in reality the one with myeloma feels far from alright. You are also quite right about not getting help. Myeloma isn't the "right" cancer to get sympathy or help.

  2. Well, in our case, my husband does look great and people forget he is sick. I, however, look like something the cat barfed up and it did start to wear on me when all people could think to say to him was, "you look good." Anyhow, I read this post and see exactly where we were 3 years ago. Tim's transplant didn't do diddly and I know how devastating it is to go through something like that to have it flop. Well, my husband knows. I just ride shotgun for him but
    we were very upset. HOWEVER, don't start thinking things are over for you. Tim went into a remission from Velcade and Dex after only 4 cycles and has been chemo free over 2 1/2 years now. Unfortunately, it is not that rare for transplants to fail or not work long but you did not waste your time. When you hear of folks getting long remissions from it, and you know that it is standard protocol for MM, how do you not give that a shot? You have to try, don't you? And there is no way of knowing whether it will work or not unless you try. BTW, it should not take a year to prepare for an allo, if you choose that route. Wishing you well from Jersey.

  3. sean, i think its a case of we dont know what to say as we dont want to make you talk about it all the time. Its not that we forget your ill, its more a case of its our way of staying positive.
    obviously its not very helpfull. I for one am trying to understand how to support our kids and how your feeling and what your going thru. Now i know what you dont like i will try and adjust my thinking and responses. Keep positive!

  4. "tims wifes" comment was very helpful for me and hopefully you too. At least there is something else to consider. :-)

  5. I've been following your blog since just before Christmas, can’t remember how I came across it. I'm a few months behind you. First symptoms started a year ago and my day zero for the BMT was 18th November and I got out on 9th December. So many things you write about could have come from my own pen (keyboard).
    I think I'm doing well with good blood counts and increasing strength but have a rash as a reaction to Septrin and haven't had a protein chain count yet. I too liked Tim's wife's comments. I guess having come so far we have to try everything that's available. If not it seems to me that everything that has come before will have been wasted, precisely because of all the suffering caused by the dex, the cyclophosphamide, the thalidomide and all the s*** side effects that they bring with them, not to mention the transplant itself.
    Oh and as for looking good.... I look like an, old, scrawny, plucked chicken, so when people say it to me I know they’re lying!!
    Steve from Oxford, sorry don’t have a URL.

  6. It's not over yet there is more to try. You owe that to yourself. It could also work. keep on the Bright side out side as you have always done let the inside take care of it's self with what ever treatment you choose. All the very Best to you

  7. Thanks for all of the encouraging comments, they are much appreciated :D

  8. I know exactly how you are feeling, re your blog of 1st Jan. I have intravascular lymphoma. Had a bone marrow transplant, 25 May this year I had my own cells back. 2 weeks before the 6 months check up, I was rushed to hospital as I had an "episode" and then fitted. The cancer has now gone to my brain, and I was told my a very "nice" doc that my future was GRIM. Talk about bedside manners!!! So once again I am now undergoing more treatment. Being a woman, of course I wear makeup and a wig. People dont even know Ive been "ill" (as we tell the kids). The IDARAM chemo I had in November only took my grey hairs, which is great, so I am actually going around with a pixi look, that I quite like, as I didnt have to dye it. But I often say to my hubby, Im sure people think Im faking it, as I LOOK SOOOOO WELL. Keep your chin up, dont let the bugger get you down. and please blog more photos, Im sure you must have taken some of the wonderful snow, and icicles?

  9. I have a blue badge! NA NA NA NA NA! ;D