Food parcels?

Well cycle 1 is under way. Mike got up at six to take the first 10 tablets (Cyclophosphamide). He reckoned he needed to take them early so he would have time to eat before taking the next 20 (Dexamethasone) and setting off for work. It can get quite complicated, some have to be taken on an empty stomach, others with food, the Thalidomide and PPI have to be taken in the evening, and the Asprin anytime as long as it's with food. By the time he had finished this morning, the poor dog thought he was a new rattling toy!

Mike is currently at work, talking the hind legs off every passing donkey, customer and work colleague (no change there then!) We were warned about the hunger so I made sure he was well fed, but I've now had several texts complaining that starvation has set in and that he will be needing a trough for his Sunday dinner when he gets in! I think I might have to set up an appeal and get food parcels sent to us soon.

Me, I feel like I could do with some of Mike's Dex!

Cluck, cluck

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!

Lorna

Pill-er of the community

Cor! Entering uncharted territory for the first time tomorrow...... starting my first course of keemoterapy begorra begeesus....... watch this space.... could take a while cause I've got 35 pills to take on day 1/8/15/22. Good job I'm not a battleship, I'd SINK.
The staff at New Cross Hospital Wolverhampton deserve a medal for the way they looked after me today....amazingly wonderful.....thank you people xxxxx.

Mike.

Thank you

A big thank you to everyone who has sent messages, emails, texts and other technical forms of support for tomorrow. Mike even had a text from his mate Dave in Australia. (Now that one had me in tears.) We love you all darlinks.

Lorna

Nervous

Well tomorrow is the big day (at least we think it is) although the way our luck is going with the NHS we'll probably be seen by a cleaner who will tell Mike to take some painkillers and come back in another month. No-one in their right mind would wish to start chemo. but given the circumstances we are both looking forward to something being done to try and help Mike fight.

Lorna

Next time we are going to Holby.

Has anyone else noticed how quickly patients get treated at the hospitals we see on telly? They go to Casualty for a cut finger and before you know it, a barrage of tests are done and some rare disease found. Then they are whisked off to a ward in Holby where treatment/surgery happens immediately.

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.

Lorna

Bless his little cotton socks.

Having myeloma is a bit like having a puppy. After three weeks of cleaning up after it, you can no longer remember what life was like before it. (Not that Mike has been making a mess, I gather that comes later!)

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!)

Sing, sing a song.

One of the things that Mike loves to do is sing. I think he's quite good (maybe love is deaf as well as blind), although it seems that his work colleagues say he is tone deaf. I suspect they say it to try and shut him up, because once he has a tune in his head it stays there all day, causing him to break out into song quite suddenly. Sometimes he will hear a song on the radio and it becomes the theme tune for the day. At other times it can simply be something that has been said to him, which triggers something in his memory and out pops a song. Well this morning it was something I said. He was trying to reach for his watch at the side of the bed:

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!

What not to say!

Just a quick post, for all our adoring fans out there. I'm not sure if anyone else has had this, but after posting our tale of appointment woe yesterday on the myeloma forum, one lady said "Your husband will have had the disease for a long time, without being aware of it." (Why do people assume we are married when I consistently say partner?) Would anyone find that particular phrase 'helpful'? All it did was make me angry at myself, Mike, the doctors and the world! The idea that I might have been slave driving him to dig the garden while he was ill last summer is not nice. (I didn't actually use the whip, just held it for effect!)

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!

Who cares?

Last night and today must be the worst days of this whole thing so far for me. I just keep crying with anger, my head feels like it is going to explode.

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.

Lorna

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.

Time flies.

Yesterday poor old Mike had to go off to the hospital for a gastroscopy to check out the heart burn he's been having. The consultant wanted to make sure it wasn't anything serious before starting treatment as it seems some of the drugs can cause problems. Now Mike has trouble swallowing painkillers if he thinks about it too much, so the whole "swallow a camera" thing filled him with utter dread. I made sure he got up in plenty of time for breakfast as he wasn't allowed anything to eat or drink after eight in the morning. He decided against corn flakes as he was convinced they would still be there and stick to the camera (you know the way they stick to the bowl and spoon if you are not careful.)
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!

Lorna

Hearts, flowers and mushy stuff.

We've never as a couple been big on Valentine's Day, one it's a waste of money the prices they suddenly charge and two if you need a special day to tell someone you see every day that you love them there is something seriously wrong. (You should at least say it on birthdays and Christmas too!) There is however a certain urgency on such days when one of you has been diagnosed with cancer. Who wouldn't think, "maybe next year it will be different." I have already read in the blogs of other myeloma sufferers the expression "a ticking time bomb" and that sums it up pretty well. Myeloma in effect has focused our minds and we make sure we let each other know how we feel every single day. All the mushy stuff and all the worries get poured out daily, I'm not sure how we find the hours mind you, there's an awful lot of stuff!

So today I made sure I got Mike a card and a present. I made him breakfast in bed. I told him that I loved him. I'm going to make sure every day is Valentine's Day, just in case!

Lorna

Cough it up, it might be a gold watch.

Cough it up, it might be a gold watch. One of my nan's many pearls of wisdom, most of which make no sense at all. Has anybody ever coughed up a gold watch? I think not!
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.

Lorna

What a scream.

To be honest the only thing I want to do today is scream. I think the NHS should install soundproof booths to be used by patients and carers alike, for those moments when your head feels like it is going to explode and the desire to "scream the place down" (I hope you know what I mean) is almost too much to bear. The reason for such emotion is difficult to pinpoint. Oh hang on, yes the last few days have been stressful, the final straw being yesterday's fiasco. I received a call from the hospital where Mike is due to have his SCT (not the same one we usually go to). I told the lady on the other end that Mike was at work and gave her his mobile number. She then said could she just check the address, as the one on the referral was not the one on her records (Mike moved from Brum when we met.) It turned out she was going to send the letter to his old address as she thought the address on the referral letter was wrong! Some good that would have done us. When Mike called me later to tell me the details, it turned out there was a clash of appointments, had she left either of us with a contact number? Of course not and I had to spend half an hour hunting down the number for him. (Hospitals are very secretive it seems and didn't answer the first number I gave him.)
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!

Lorna

You can't please all of the people...

Despite some bad feedback, Mike has decided, nay, insisted that we keep this blog going. We would like to make it quite clear to everyone that I may type it, but Mike is the one who dictates it.

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.

Posterior posterity?

Another day, another dollar. Is that the expression? Mike has dutifully gone off to earn a crust and bring home the bacon, (gosh I could just eat a bacon sarnie). Meanwhile I'm sitting on my bum writing this blog.

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!
Lorna

Disclaimer: Blame him.

Where to begin? Well I suppose with the dreaded news of a week ago. Mike and I gave up smoking nearly a year ago and we hadn't felt right since. I went to see the doc had a load of blood tests done, nothing. Mike meanwhile came to the conclusion that his tiredness was simply due to the stress of work and it was only a really bad stomach that eventually convinced him to see a doctor. The doc did blood tests and the rest you can all fill in for yourselves. Mike has myeloma.
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!

Lorna.

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)
Mike.