Sunday, 28 February 2010
Saturday, 27 February 2010
Well what chickens we both are. After a sleepless night (we were both awake, but neither of us bothered to tell the other) Mike decided to delay his tablet taking. We both know that chemotherapy is a necessary evil, still it's a scary thought. He was concerned that he had a full day at work and he didn't want to go ruffling feathers (we've read that Dex has a strange effect on some people, no change there then!) I have to say I agreed with him, I was a bit worried too (OK I'm terrified he might have a serious case of road rage!) So Sunday is the plan now. He still has to go to work, but at least it is a shorter day. It will also give him a chance to tell the bloke he works for that he isn't well. All Mike's days off have been spent at the hospital over the last month!
We did have a few laughs though yesterday. Most of the things said can't be repeated on here, I'll leave it to your imaginations, bearing in mind that Mike is taking Thalidomide, (being told if you can't be good be careful at our ages is hilarious!) There was also an incident when Mike told Dr SB that he was really pleased that Dr AB (the nice lady we saw) had been brutal with him about his prognosis. Mike now has a reputation for liking "brutal" women!
Friday, 26 February 2010
The staff at New Cross Hospital Wolverhampton deserve a medal for the way they looked after me today....amazingly wonderful.....thank you people xxxxx.
Thursday, 25 February 2010
Wednesday, 24 February 2010
Now I realise that in real life things are never as they appear on the gogglebox, (look how big chocolate bars are in the adverts compared to the morsel you get from the shop!) but the patience required by m.m. sufferers is truly amazing!
Over the last few weeks we have read so many tales of how long it took to get a diagnosis and that is merely the start of it. The wait for results, the wait for treatment, the wait for more results to see if said treatment has worked, the wait to start harvesting for SCT, the list goes on and on. Even when someone is told they are in remission they are still waiting, hopefully for many years, but still they are waiting for m.m. to come knocking and say "Honey, I'm home!" Jack Torrance style. (Apologies to Mr Nicholson but that demented character is just how I see myeloma. Funnily enough I've never actually seen the film.)
So to all m.m. sufferers out there, be they smouldering, full-blown or in remission:
You all have the patience of a saint and I salute you.
Monday, 22 February 2010
Someone kindly suggested I take up knitting to keep my mind off the aforementioned illness. So out came the bag of needles I inherited from my nan. An assortment of needles gathered over years of knitting jumpers, cardies, blankets, shawls, tea cosies and various toys. The biggest problem was trying to find the correct size. 12's the thickness of a cocktail stick or my little finger and everything in between. Eventually with the help of the Internet I managed to sort them out. My next problem was lack of yarn, until I remembered the crochet cotton I had bought on a whim. (I was going to crochet myself a little bolero/cardigan thing, but never really got started.) So I'm now in the process of knitting cotton socks, I've already got my daughters ordering knee highs! (For some reason the men in my life don't fancy cream glittery socks!)
Saturday, 20 February 2010
Me: Careful you don't roll out of bed.
Mike: Not a good idea I might break.
Me: Well I'm not picking up the pieces.
Mike: ♫ I'm in pieces, bits and pieces.♫
It could have been worse. A week ago it was ♫ My, my, my, myeloma.♫ to the tune of Delilah. I fear there may be more to come!
Friday, 19 February 2010
If I'd known I was ill, I'd have kept digging to save time on the funeral. -Mike
So if in the future, you meet someone who is caring for or has myeloma, don't point out that they have been falling apart for years, you might upset someone!
Thursday, 18 February 2010
Well as I mentioned in my first post Mike was due to see the consultant on 26th Feb, but after having his x-rays the hospital sent an appointment for 17th Feb. which we attended thinking they knew best. We met a very nice lady (I actually mean girl, which just goes to show how old I'm feeling) who asked us why we were attending her clinic, to which we replied we had no idea as the appointment had been sent and we hadn't thought to query it. She had a look at Mike's x-rays and pointed out the pitting on the skull (looked like tiny miners had taken their pickaxes to it), the no longer square vertebrae (her words not ours, she did correct herself and say oblong) and the dark patches starting to appear on other bones. She told us it was stage 2 igG kappa myeloma (we were feeling left out as everyone else seems to know such things) and said she would like to start treatment straight away, but wasn't allowed to as:
1)Mike had to be discussed in some sort of meeting.
2) His consultant is currently in India (has been for nearly 3 weeks!)
We had no choice it seemed other than to say ok and we'd be back on the 26th.
I'm not sure why I did it, but as we were leaving I thought I'd check that the appointment still stood. NO it had been cancelled. NO there wasn't any appointments at that clinic available. In fact we still haven't been given an appointment. The receptionist promised she would sort something out and call us, we are still waiting. It is as if no-one cares. The support staff (that's what they all seem to be now) act as if an appointment in a month is good enough, they don't seem to understand what it is that Mike has got. So just how urgent is it that Mike starts on his treatment with stage 2? I'll keep you all posted when I have more news.
P.S. We have eventually managed to get his original appointment back, just as well really as we were planning to arrive with sandwiches and a flask and sit there all day if we had to.
Tuesday, 16 February 2010
By the time we got to the hospital not only was he starving, but also a nervous wreck. A very nice nurse talked him through what was going to happen and asked him if he was having the throat spray or the sedative. Mike decided that to be on the safe side he had better have both.
Well I sat nervously in the waiting room, half expecting to see him running out or security running in (he was worried he might start kicking them.) Others went off and came back, it seems the throat spray option only takes ten minutes. Eventually a smiling face appeared. They had given him a cup of tea and some biscuits and he went straight to the vending machine to get some chocolate (we did comment to the nurse that it was a little cruel to have a vending machine when most of the patients were being starved!) It seems it wasn't anywhere as bad as he thought it would be and said next time he would just have the throat spray.
"It only took 5 minutes and then I was wheeled out into a side ward and given tea and biscuits. I can't have been gone long. I don't think they gave me any sedative, I feel really wide awake."
Imagine his face when I told him he'd been gone an hour. I think he must have fallen asleep!
Sunday, 14 February 2010
Friday, 12 February 2010
Mike has managed to find himself another chest infection. (It's a shame he couldn't find a winning lottery ticket at the same time.) He started coughing last Thursday but insisted it was nothing, just a dry tickle. I eventually forced him to go to the doctor's by making the appointment myself and of course I was right! The doctor has given him some lovely 500mg antibiotics and a mountain of painkillers. I wish he would take things just a bit more seriously, it's great to stay positive, but ignoring things isn't a terribly good idea under the circumstances.
Thursday, 11 February 2010
Even better news came via the postman. An appointment for Mike to see someone nine days earlier than originally planned at our local hospital. Now this has sent me into complete panic mode. As the letter was clearly dated the same day as his x-rays I'm worried they saw something that meant sooner rather than later was better. Mike of course is just pleased that things are moving along.
Now where is that booth!
Wednesday, 10 February 2010
Yesterday was photo day. Mike had seven snapshots taken of various parts of his body. I can't wait to see how cute his bones are. There was one small problem however, he forgot that he was going to have to get undressed for his photoshoot and put on black socks, which didn't look too good with his white trainers, the radiologist teased him no end. Where is Gok when you need him? Mike certainly needed advice on how to look good naked while being x-rayed!
It seems that our dog Toni, a Jack Russell Terrier, has worked out that there is something going on with Mike's bone marrow, she's requested a doggy bag next time he has a sample taken so that she can analyse it for herself.
Monday, 8 February 2010
I thought I would share another pearl with you all. I was just going off to sleep last night when some bright spark starting talking to me.
"Don't worry darling I'll outlive us both."
"How exactly do you plan to do that?"
"Guess I'll make a trip to Madame Two-swords." (Boom Boom)
I'm going to have serious words with his humour one day!
Sunday, 7 February 2010
It is at this point that I should emphasise that to my knowledge there is no myeloma joke book, or even a website dedicated to such bad humour and as such, all jokes are the responsibility of Mike. He has always had, to my knowledge, a rather dark, dry, caustic sense of humour, some of which might be seen as in bad taste. Under the circumstances I think he should be allowed to say what he likes.
Getting back to the moment when our world changed forever (1/2/10):
Doctor: We've got the results of your bone marrow test Mike, it's myeloma
Mike: Sorry doc did you want it back? (Boom boom.)
With humour like that I'm dreading what he will be like on Dex!
The only thing I'm dreading is finding out I've got the European version of the disease....I think they call it Metre-oma. (Boom Boom)