Debs' Journey with Myeloma 2012-06-09 10:51:24

I can’t believe how rubbish I am these days at keeping this blog up to date. I think it has to be a good thing as it means that I’m not focusing too much on me and myeloma! And that has to be good!

The last 24 hours have however, made me aware of 2 more myeloma acquaintances suffering from the consequences of having this awful cancer. One upbeat man whose blog I read, sadly passed away a week ago, and another amazingly positive lady is now playing the waiting game in hospital, very ill and with nothing now to help her. I can’t believe that in the past 6 months, I will have had to see 4 amazing people leave this world due to myeloma. It is the downside of building up relationships with people in the same boat as me. But the support I feel we all give each other is invaluable so I have to take the downs with the ups. Nick finds it hard when he finds me blubbering on the sofa when I find out sad news, but I think even he partially understands.

It puts my issues into some sort of perspective really. I had become a bit paranoid this past month with a shoulder pain that I have had. The X-rays came back all clear, but something was still niggling at me and I couldn’t work out what. It didn’t help that I was told that X-rays don’t always show myeloma fractures up, or that I know of someone with a fractured neck whose blood results were all fine (another friend who has relapsed after an allo, and more proof to me that the allo is a bad choice!). In the end I burst into tears on poor old Nick last week and told him how worried I was about my upcoming 12 month check up, that I was concerned that they would find something I wasn’t ready for them to find, and basically that I was scared stupid. And being the level headed and lovely husband he is, he suggested I asked the hospital about an MRI and what their feelings were.

So, surprise, surprise, after a lovely response from the hospital, and my consultant calling me at home to say that whilst she was sure it was nothing, but that I should get an MRI to make sure given that the pain has been there for 2 months, guess what…..yup the pain has started to subside and go away! And yet again, I look like a paranoid fraud!! That said, I am totally relieved that it feels a bit better as it does make me more confident that it is just muscular and not bone pain.

So yes, I have one more appointment this week before my 12 month check up in July…..where on earth did the last 12 months go to?! It will mean another bone marrow biopsy which I detest, but at least now I know that drugs ARE the answer, and I will ask for happy pills as well as gas and air :-) . The days of me not even wanting to take paracetamol are well and truly gone, and now I am a firm advocate of taking drugs for any pain! It could make for interesting conversations with the kids in their teenage years…lol!

And in the meantime the Glitz and Glamour Ball is steaming ahead! We have now sold out on tickets so I’m very sorry if anyone who reads this was thinking of coming and hadn’t yet let me know or ordered tickets. It seems like putting the ‘early bird’ price onto tickets, meant that lots of people actually booked very early and now we have sold all of the 278 tickets!! Amazing. And to think that there was a time where I was looking at venues that could only hold between 100 +150 seats. Funnily I have found it really hard when I have had to say no to people. We’ve turned away about 6 tables to date and it has meant that I have had to turn down people that I would have loved to have been able to come. It was definitely a stressful period, and no matter how much people reassured me that it wasn’t my fault, I have taken a while to come to terms with it. Even now when people are saying they want to come, it is tricky to say to them that we have sold out. If I was ever mad enough to do this again, I have definitely learnt some lessons about how to sell tickets!!!

However, I stand by my decision to stop fundraising after November. Even if only for a year or so. Having heard all of the sad news recently, I will be so gutted if I relapse before this ball is over. I have given up all my time to try to make it a success, and whilst I try not to let it affect the family too much, it does sometimes. So my plan come December, is to have some time where I do perhaps look for some voluntary fundraising with a charity (non cancer related!), but where I can work a few hours each day and focus on the family the rest of the time. I don’t want to have regrets from all of this horrid affair.

In the meantime, I’d better go now as I have a few more emails to send out tonight!! Still on the search for that first prize for the raffle!!