Rhubarb grumble

I was going to have a really good grumble about certain bits of the NHS. About the nurse who was put out by the idea of Mike needing treatment on Easter Monday, if he went ahead it would be very inconvenient as she'd have to work and she told him he was making things awkward for her! About how the pharmacy takes forever to make the prescription up, then when you go back to them, they tell you they haven't got the stuff!
Instead I have decided to focus on the lovely rhubarb crumble that I am going to make to be served with custard after tea, which reminds me of the old cartoon Roobarb. Things often didn't go right for him either!

Dawn chorus.

This is Mike at 7 o'clock this morning. Posing in his cancer kicker bracelet and football shirt to prove we are in the UK. This is actually no proof at all as his mate in Australia is also a Baggie and his wife decided to keep things fair and became a Wolves fan!!! (for the benefit of our US fans, think Wolverines and Buckeyes!)

Now any normal person would have been either fast asleep, or too bleary-eyed to pose, but he'd been awake since 3:10. I'm not sure what time he actually got out of bed, but at 5:30 Toni thought she'd come and find me because obviously I was meant to be up as "daddy" was cleaning the kitchen! (Yes I'm grateful to Mike, but not to Toni.)

I'd read up on the side effects of dex and hoped that there would be some respite from the nocturnal wanderings, unfortunately there just aren't enough days between doses for it to wear off! I would ask for my money back or an exchange, but I've only just got this one comfy! ;-)


Toni dominating in a Cancer Kicker bracelet.
I know she looks fierce, but she was yawning as I took the picture.

We are not alone!!

We had a lovely chat with the super efficient GD today, she's a PROPER old school nurse (so mind out chaps). It would appear that she shares our sense of humour...... lol. (I hasten to add she isn't actually by any means old.) I asked her for directions to the parking control centre, to which she replied:

"It's in the same building as the mortuary, why the burning desire to go there?"

"I'm dead keen to get my concessionary pass." (Boom boom)


Velcade without the saline bag, GD was busy........ painful and went a funny colour. lol

Cycle 1 day 11. At least I think it is.

All this cycle and day stuff is so confusing. We were hoping for a proper day off together next week but guess what....... it's Pamidronate time again. It's bad enough having an illness, but even worse that we never have that elusive "quality time" together. How about the evenings I hear you all cry! Well by the time dinner has been made, eaten and the kitchen rescued from looking like a transport cafe, I'm so tired that all I want to do is sit in front of the tv and chill out. This isn't helped by Mike's nocturnal habits, again due to the mm and the instructions to drink at least 3 litres of water a day, well it has to go somewhere! I love him dearly, but what with plastic water bottles that creak when being poured, the endless coughing (not a chest infection we're informed, well twice actually) and the padding of feet across the landing, I'm just about ready to find a really good sedative to put in his tea!

Being serious though, I'll put up with all that and a ton more. To quote Dai who posts a lot on the Myeloma UK discussion board, "Whatever it takes, for as long as we can."

Booking made easy

Forget Thomas Cook.....they have no idea how to make easy, booking a break away from home ,when compared to Dr. PM at the QE. Perfectly explained in understandable terms, itinerary to die for....pardon the pun.
In other words I've got my SCT lined up for November 2010 and am feeling better knowing what is planned when. just gotta get on with the prep to get there in good fettle!
Feeling homesick already. Don't fancy weeks in bed away from Lorna every night, but if it gives us a life afterwards, then it will be worth it definitely.

Does anyone have middle of the night Dex dreams, waking up laughing out loud at the thought of their consultant bombing out of the hospital car park in a Dodge Viper (flames painted down the sides), wearing combats and an open faced white helmet with the chin strap done up...... no?......oh well.

New fridge or faze the kids, no contest....lolxxxx

Fridgephobic!

I know there's no such word, but it sounds good. I have always had my little fears for company, the usual fear of heights and confined spaces, including my bedroom when the lock broke and I was trapped in it, but now I have a new one. The fear that my fridge might pack up or even that we might have a long term power cut! Now both events are extremely unlikely, the fridge is only a year old and we're not living in the 1970's. Still I keep checking that the little green light is on and that the temperature isn't rising.
I'm still trying to come to terms with things which is strange because we were told at the very start that Mike would have treatment (CDT), then a harvest, then a SCT. Now that the appointments for the harvest and SCT have been made it all seems much too real. I'm starting to doubt my own ability to cope with it all.

• The one and a half hour journeys on public transport to see Mike at the hospital. (Three hours every day on buses and trains! )
• The seeing Mike looking so ill.
• The empty bed at night. (I know it's the same for everyone, but humour me here!)
• The looking after him properly while he gets back to health.

Just thinking about it all makes my head hurt.

Meanwhile my kids are all terrified that the contents of the refrigerator, namely the Neupogen, is going to jump out and get them! (The youngest is 15 so they should all know better!)

How do you know there's a myeloma sufferer in the house?

There's Neupogen in the fridge. (Boom boom)




Yes we now have a handy supply of granulocyte-colony stimulating factor (G-CSF) sitting next to the cheese. Gone are the days when it's contents were delights such as a nice bottle of chilled white wine or an ice cold beer. I did question the wisdom of giving us the stuff when we don't need it until the beginning of October, but I guess it saves us having to make a special trip over to Birmingham and the QE! Dr PM is very to the point, questions were answered by one of the two CNS that she works with. I walked away feeling that we really had no say or choice in the matter of SCT, Mike I think felt it was the only course. So in theory it is all timetabled to happen October and November. No doubt I'll get used to the idea.

Good news, our Cancer Kicker dominate bracelets arrived today, despite me telling Cassie and Phil they didn't need to send them all the way over to the UK because of the postage costs!

Sunday lie in? No chance.

Not much to report. We still haven't won the lottery, despite playing both the national lottery and the euro one. We always seem to be one number off, picking 10 instead of 11, 25 instead of 24 etc. We'll keep trying.

Mike wasn't feeling too good last night, it would appear that two days after the Velcade or the day after dex (we're not sure which) he finds that his bones really ache and he becomes more breathless. Despite that we went off to the cinema to see Avatar in 3D, it was better than staying in with three giggling 15 year olds! Oh the joys of teenage sleep overs! By the time we got back we had missed MOTD (but that's OK because it's repeated on a Sunday morning!) and "had" to watch the Football League Show in order to get our Saturday fix of football and yet we still managed to miss the goals from our team! I wish like Mike I could manage on six hours sleep, (I think I must have used up my broken night's quota with the kids.) I'm just getting more exhausted with each passing week.

I told you so. Rant and rave.

Just to prove what I said yesterday is true I have just read Amanda's blog. For those of you who haven't seen it you can find it here http://amandasadventuresinmyelomaland.blogspot.com/
She is a lady who, despite losing her husband to jaw cancer just after her myeloma diagnosis, still managed to be positive through her two SCT and is determined to live to see her daughter finish school. If anyone doubts how lucky they are today, check out what happened to her yesterday.

I used to wish I could win just enough on the lottery to buy a bigger house so everyone was comfortable. Now I wish I could win enough money to fund finding the cure for myeloma. Only last night on the news they were talking about some bloke (I'm not big on news) who had been made a peer, thinking that he would pay 10's of millions in tax (they estimated by now 100 million) and yet he hasn't. Imagine how much money he must have to pay those sort of taxes, and what could be done in the way of research with just the tax money he didn't pay. It's so unfair sometimes.

There is always someone worse off.

I was busy sitting here feeling sorry for myself after a bad night's sleep (it always makes me cranky) when up popped a status update for a friend on facebook. He was wishing a friend and his partner good luck for today as it's the first day of chemo. Now I don't know his friend or his partner, but a quick click took me to his info page. There I saw that he has a new baby and is the ripe old age of 24. Yep one year older than my eldest child.
A timely reminder that sometimes I might be angry at the world because of Mike, but I should always remember there are people out there who have a much greater right to rant, rave and be mad at what fate has dealt them.

As you may have gathered today is day 4 of cycle 1 with Velcade. I'm sure Mike will fill you all in when he gets chance. Also I forgot to mention that I got a call on Tuesday, inviting Mike to a special party at the Urology Department on Saturday at 10:00, bring a bottle too!

" If I were a rich man"

Oops, wrong movie, that's Fiddler On The Roof.
But then again I'm on my dex again so maybe relevant....lol.
Today at the day case ward for my Velcade was uplifting. Not only was it on the second floor, I learned that the treatment only takes 3 seconds once they have set up the cannula and best of all I overheard a nurse say " these must be the wrong notes...he's never 55 yrs old!" She took loads of persuading over a good few seconds before she believed the Sister....lol.
I can feel a trip to Thorntons coming on before my next appointment.
On a more serious note, I'm relieved that finally I'm on treatment again and I'm very thankful that the staff have assured me they will do their level best to get me out and back to work quickly whenever they can.....bless them xx.
I got to see Dr.SB again unexpectedly because no consent form had been done for the Velcade, and apparently they can't kill me without permission (and I am quoting the Matron here). He appeared pleased to see me and asked how the haematuria was, (notice he used the technical term when he spoke to me...polishing nails on lapel.....lol), and then nearly fell off his chair laughing when I quoted an article that had put my mind at rest, that Lorna had found on the trusty Internet. It was in relation to the blood in urine problem, but was written by a VET. I tried to explain that we are all animals, but he just kept laughing for some reason.

Mike .

A tin roof, a sunny day and a cat.

That's me up there with it. Now I've heard of people who clean (some of them fanatically) when nervous, me I sit and try to occupy my brain and check my phone every 10 seconds, just in case I have a message. Yep, Mike is at the hospital having his treatment. I'm sure as the weeks go by things will settle down for me, I'll know how long it takes and how Mike is going to react. But today I am staring into the great unknown and that makes me really jumpy. I'll post again later when I know more.

Rock and Diamond

Hi everyone, just have to say I think it is easier to be the MM sufferer than ever to be a carer, there are so many worries and so much work for carers whereas as a sufferer I only have to take it as it comes, (no choice...lol).
The reason I'm writing this is because I want the whole world to know what a ROCK and a DIAMOND my lovely Lorna is. She is completely unselfish and totally committed to being my salvation, and only occasionally shouts at me when I'm TOTALLY unreasonable.
Now I'm cryin but wot the hell.....I LOVE HER VERY MUCH xxxxxxxxx.
Mike.

New arrival.

I got home from shopping to find a new resident. With a fair amount of trepidation and fear we opened it's cage. What type of dinosaur would it be? Would it be friendly? The second she saw the box, Toni went nuts.

We did eventually manage to get them to pose nicely together.It would seem Toni has a new best friend.

How to break a camel's back.

Easy, send an appointment for the urologist that is five weeks after treatment has started again, when the consultant wanted the results before!
"Yes the file is marked urgent, I don't understand how it can have happened that way."
This camel has well and truly got the hump!!!

Oh the shame of it all.

I am so glad I don't do a video blog. If I did you would see that I am still blushing. Today was Mike's ultrasound. He had followed their instructions very carefully, making sure he drank a pint of water an hour before his appointment. He'd kept his legs crossed and taken his own dressing gown in as they suggested. All seemed to be going exactly as it should. The hospital had sent out very clear instructions on what would happen, the undressing to the underwear, the checking they had the right person, the cold gel, the dimming of the lights etc. Mike went in, an appropriate amount of time later he re-appeared along with the radiographer both of them grinning from ear to ear.
Now what do you think caused such a reaction? This is the cause of my shame and embarrassment, Mike had decided, knowing full well that the lights would be dimmed, to wear his special, glow-in the dark message underpants! I will never be able to visit radiology again!

Goodbye Mr. 'T'

No I don't mean that Mr. T but Mr. Thalidomide. Dr SB has decided that under no circumstances will he be prescribing aspirin for Mike and no aspirin means no T. So next Monday Mike has an appointment for his first dose of Mr. Velcade to be taken along with Mr. Dex (he doesn't mind me shortening his name!) I'm sure the drill will be familiar to some of you, I'm not too sure how two days of Dex followed by one day off will work out, but at least there is the ten days off to look forward to. Our biggest issue is of course that Mike only gets one day off in seven, so treatment will have to be done on two half days, resulting in no real quality time until the ten days off.

I shouldn't laugh really, but Mike has been on so many tablets in just a few weeks that his record sheet is starting to look like a pharmacy stock take! In the meantime he is still taking his Mesna (affectionately known as Mensa, he has a very intelligent bladder now), ultra-sound on Thursday (I hope it isn't twins) and a nervous wait to see the urologist who will be doing a cystoscopy (I think I'll pass on the holiday snaps from that camera.)

I think I'm going to relax and enjoy the peace and quiet for now. I get the feeling things may soon be getting hectic again!

Yes I'm moaning again

Does anyone else have days where you get out of bed grumpy and angry at the world?

That's exactly how I feel today. Now I know that mm is far from being a picnic, but right now I'm completely p***** off that having waited a month to start treatment, Mike didn't even manage a week. Now we have to use his day off next week to go and see the consultant Dr SB. But why? Mike hasn't been given an appointment with the urologist yet and as the appointment with Dr SB is Monday afternoon, it doesn't seem likely he will have. So if he won't (or doesn't think it wise to, ) continue treatment without further investigation, why drag us in?

I was reading feresaknit's blog earlier and Tim's Wife (all this code name stuff is so exciting) suggested that us MM women be we carers or sufferers need a holiday, damn right we do. I don't know if it is just me, or whether other women have the same experience, but when I get PMS or just generally annoyed, I let rip, no holding back. When I'm done and the rage has past I am quite capable of looking back and saying "yes I was in a bad mood darling and I shouldn't have taken it out on you." It seems men do not have quite the same reaction "I wasn't in a bad mood, nothing to do with the drugs." I try to be patient and understand, but my patience is just about used up with all the disturbed nights, hospital trips and worrying.

And to top it all, I read on The Myeloma Beacon an article on "The Impact Of Age At Diagnosis On Myeloma Patient Survival." I suggest no-one else does it's very depressing.

The plot thickens, a bit like my head.

Mike and I have just got back from the hospital. After Wednesday's episode Mike had been asked to pop back at 8:30 to find out the results. Obviously at 9:45 we were still sitting in the waiting room and started to wonder "why it is that doctors are always late?" Is there ever a point in their day when they are on time? Do they even manage to get up on time? Why say come in at a specific time if they know they never make it? Anyway we were eventually seen by Dr MM (very apt initials) who seemed as bemused by the problem as us. Despite stopping all the drugs the problem remains. The most interesting thing that I discovered was......... wait for it........ that although Mike's wee is pink and definitely looks like it has blood in it, there isn't a red blood cell to be found! That's right the redness isn't red blood cells but something else (I've done a bit of extra research and found out it could be haemoglobin the stuff that makes r.b.c. red.) Dr MM decided it might be best if she went and spoke to Dr SB. Mike's condition obviously intrigues him as he left his clinic to come and see us (sorry those who were waiting to see him.) Eventually he decided that until Mike has seen an urologist that it is best not to take anymore CDT, in fact he hinted that another regime altogether might be used.
See, I told you the plot thickens, along with my poor head trying to process all the extra information.

Latest from the front

After various tests they have ruled out an infection for now (although they have sent his pee off to the lab to see if anything grows....... strawberries perhaps?) They did an x-ray of his kidneys and he has to go back Friday morning to see if they saw anything. For now he is off the T and aspirin, and they will review his treatment on Friday.
That's all for now fans.

Tough either way.

Dear friends and followers.
Some of you are in the unenviable position of being a myeloma sufferer, others are caring for someone and some are nervous onlookers who care about Mike and I and want everything to be ok. I can only say how tough it is to be a carer, I try to imagine how it must feel to be the sufferer, but there is no way that I can ever understand. I'm trying not to moan too much, but days like today make it really difficult to cope.
Poor Mike has had blood in his urine for a couple of days now. He called the CHU emergency number last night and the nurse on the end of the line asked him loads of questions and eventually came to the conclusion that it was nothing. That seemed fine as during the night and first thing this morning his urine was clear (well it was clear any way, just strawberry coloured!) So off to work he went. First trip to the loo, back to strawberryade (not fizzy or even frothy, but you get the idea.) A call to the CHU no reply, a call to our CNS no answer. So he left it a while. When he got hold of someone to talk to they decided it might be a good idea if he popped along at 1:30 to see someone, only problem was that by the time he had that chat his boss had gone out and he couldn't leave the office. Whoops! It gets better. At 1:30 p.m. they called him back with an ultimatum, get there by 2:30 p.m. or they might cancel his treatment. At that point total panic (well Mike doesn't exactly panic, but you get my drift.) By a really good stroke of luck his boss walked in soon after, and Mike was able to make the trip to the hospital, arriving just before their 2:30 p.m. deadline!
All this is obviously very frightening/worrying for Mike and for me, sat at home with only the odd text or phone call, a nightmare situation (I couldn't even go to the hospital because of the aforementioned norovirus!)
So here I sit with baited breath. I need a stiff drink to calm my nerves!

Lorna

Sunny day

I haven't really got any news to tell, but I hated the idea of leaving the blog on a sour note. So today is a beautiful Spring day. The sun is streaming in and Toni is warming herself in a spot on the landing. Mike has a lot of pain from his BMB site although he is trying not to let on. (Is it linked to the infusion yesterday or any of the other drugs?)

I finally got round to uploading the picture!

Bad morning.

I am not in a good mood today. First I was well and truly told off for being too much of a fusspot, it seems Mike didn't like being reminded to take his T last night and me trying to look after him when he could barely open his eyes this morning didn't go down too well either. I tried to pass it off as drug induced, but Mike was quite insistent that it was nothing to do with them, I won't bore you with the heated discussion that resulted. I'm left feeling very deflated by the whole thing, fancy getting shouted at for trying to be nice!
Mike is currently at the hospital having his Pamidronate infusion. I was going to sit with him to keep him company, but I was told I couldn't and "go away". I do understand the risk of norovirus (something the hospital is having trouble with at the mo) but ironically, it was that ward that gave Mike what we think was that very same bug when he had his BMB done.

All in all, not one of my better days.