Friday, 31 May 2013

Awkward pause.

Awkward. That is how I feel about being an in-law in the myeloma family. Mike is well and we try to live as normally as possible, well as normal as Mike ever is. Mike's remission isn't the only reason though.

It has been creeping up on me over the last nine months or so, a sense that I don't belong. It is a very touchy and tricky situation when the people you want to support make it clear in their blogs they don't want help, sympathy, empathy, comparisons or advice, especially from someone who is only the partner of a myeloma sufferer / victim / patient / host? Even the label we use is open to ferocious debate. They are of course entitled to say whatever they want, it is after all their Myeloma journey / fight / battle. I get the anger, I'd be mad too if I was under 50 and diagnosed with something incurable. I wish there was a phrase book that I could use so I don't offend, I wish they could all agree on an acceptable term, but just as each person's myeloma is unique to them, so is their response and the terminology they prefer to hear.

One blogger Alex had quite a bit to say on the subject and I have to confess it has left me not saying anything much any more. How can I comment on Deborah's pain? What do I say to Wendy about her test results? 

It's easy to comment on the blogs of people who aren't touched by the big M, or who are themselves looking out for a loved one, but increasingly difficult otherwise. So if I have said anything to offend anybody out there I am truly sorry.

Thursday, 9 May 2013

Go jump off a bridge!

Or not as the case may be. Mike spotted last week that Myeloma UK are holding a sponsored abseil off the Forth Rail Bridge to raise funds. It turns out that his family used to visit relatives in Edinburgh and as a child he had always wanted to go up there rather than stand at the bottom and watch the man painting it on his little seat on a rope. So Mike of course called them up and asked if he could, as a Myeloma patient, take part. The nice lady on the other end of the phone said "oh, well, I'm not sure whether it is advisable or not. I'll have to speak to a colleague and call you back." A minute later he got a call saying that if he signed a disclaimer and got a letter from his consultant then yes he could take part.  

It just so happened that yesterday afternoon Mike had an appointment to see the rather marvellous Dr SB so after the pleasantries of everything is still under control and you are doing better than I expected (the later more implied than said) Mike raised the issue of the letter. I'll skip the conversation that followed and simply say Dr SB won't be dictating to his secretary any time soon.  He did say "can't you find a safer way to raise money? Surely there has got to be an easier way?"

Mike reckons he just wants to keep his favourite guinea pig alive, which I wholeheartedly agree with.