Myeloma & Me

As I was lying in bed this morning thinking I should get up I was also thinking about B.  Actually there was some thought of a scene I’d seen in Watchmen yesterday, no wonder it’s an 18 but since B was snoring away my thoughts turned to myeloma. 

Last weekend as I was standing in the kitchen Bernard put his arms round me from behind and said that he would be glad when it’s June and the SCT process is over.  On Wednesday when I woke him up I got a cuddle, just a cuddle, and even as he opened his mouth I knew he was going to say the same thing again.  Then last night or rather early this morning when he came to bed at 3:45am (sometimes he has trouble adjusting at weekends) he said that he wished he could just wake up and find it had been a bad dream.  I said ‘What coming to bed at this time?’ and he obviously said ‘No, you.’  So I snuggled in and gave his hand a squeeze.

We don’t actually discuss myeloma much as in the medical side it tends to be more about things I’ve read on blogs because these are about people and B is way more of a people person than me.  I’m actually rather shy but now I think what the hell and have made a conscious effort to be more extrovert.

B doesn’t actually read any, he doesn’t actually read much other than Page 3 and the brochure for the new car we got last November.  But together we’ve looked at Ruth and her FL’s wedding photo, Lorna’s photos of Toni, watched Phil’s son Ocean decide whether Spiderman or Daddy would beat myeloma, seen Beth’s foot, read of Denise’s parking lot altercation (B had already decided a visit to Tesco by me wasn’t a good idea, this compounded that thinking) and admired Tim’s truck.  We’d also read of George’s wife Sue and her car accident.  From an article on John’s blog we raised questions at the Royal over stem cell transplants along with trying Ruth’s cherry, lime and banana cake recipe (highly recommended).  I intend to try the gingerbread recipe soon. 

Basically that’s all B has seen direct other than that he gets edited highlights from me.  Bernard remembers people by association, hence, once meeting someone I worked with at a Christmas party she become known as Maplins, because she had a red blazer on that looked like the sort of thing a holiday camp employee would wear, Maplins being a fictional camp on an old comedy programme, where they wore yellow coats!  So we have Ruth who knits from Aberdeen, Lorna from Wolverhampton, Phil, you know, from the video we watched.  

There’s a lot of blogs out there, some of which I read on a regular basis, some I tried once but didn’t read again and a few I comment on.  Selective information is then shared with Bernard, generally the good stuff but obviously sometimes a combination like when Ruth’s husband was having a tough time fortunately followed by yeah, FL’s blood results are normal.  

I feel an affinity with everyone with myeloma but as with life generally there are people you would have a drink with and people with who you would pass the time of day.  I read George’s blog regularly (but rarely comment) and although I think that George and Sue may be in the latter category I feel a special affinity with Sue because she was diagnosed exactly a week after me.  As you may know things haven’t been going particularly well and on Thursday I saw a post listed on my blogger following list but when I clicked it was no longer there.  I’ve checked regularly since and this morning it the full post was there.  Being the eternal optimist I’d kind of hoped it was because they were waiting on good news and stomped on the niggling thought that this wasn’t the case.  When I read it I realised just how involved I’ve become in the well being of the people whose blogs I read regularly.

 Thursday I read of Caroline McWilliam’s demise in February from complications from myeloma.  She was an actress who starred in Soap and Benson and although I vaguely remember these I have to admit I can’t really place her.  I thought that’s a bugger but these things inevitably happen and even though she had myeloma I can’t say I felt vastly different than I would have done if I’d read she died of something else.  However when I read George’s post this morning I cried but not frustrated tears like B’s mum caused a few weeks ago.  These were the quiet big tears that roll down your cheeks while you barely make a sound that come from feeling a deep sense of sadness about someone you know.  Even though I’ll never meet Sue and get the opportunity to see if I would pass more than the time of day with her, her life has touched mine in a way I wouldn’t have anticipated.

There was a quote I heard in Watchmen that I loved and it is one I am adopting for my myeloma –

‘I’m not locked in here with you, you’re locked in here with me!’

5 responses to “Myeloma & Me

  1. And so far, myeloma folks seem to be the most warm, caring, and funniest darn people one would ever want to
    be “locked in” with. Great post.

  2. Well done B.
    The biggest most amazing thing I have learnt from being conscripted into the myeloma club is that no matter how bad things are, there are people out there who are willing to share the bad times as well as the good while at the same time supporting others. It has been a week of tears, some of them sad and some of them happy. At this rate they’ll have me on the ward with dehydration!

  3. Way to make a friggin 29 year old man cry on a Sunday morning when he probably has had too less of sleep thanks to his 3am wake up call.

    Last night I was on the MMRF Facebook page and I found so many caregivers and newly diagnosed patients looking for help and support in this scary new journey for them. All I could think of this how the MM blog world has been that support for me and made thinks less daunting.

    Thanks for writing it down so wonderfully and for the conscious effort to be more extroverted. Thanks for your contribution to the unfolding MM story.

    By the way, why Wolverhampton? The hair dye must be getting to my brain and slowing me down a little.

  4. Oh my! We got a few name-checks there! And the wedding photo link – gulp! FL has a similar relationship to the MM bloggers – he knows them / you all at one remove because I am reporting the latest news rather than him reading it himself. We had a very special MM blog friend in Andre from Seattle / Vancouver (Motocancer blog) and it is weird seeing his comment on our wedding post, knowing he is gone now and knowing it was MM that put us in touch and also took him away.
    You are “the one with purple hair” by the way! 😉

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