Bank Holiday Weekend kidneys.

It is confirmed, Mike is definitely allergic to Bank Holiday weekends. The slightest sniff of one and his kidneys go on strike allowing the dreaded creatinine to build up (or whatever it is it does ) in his blood. Well thank you very much kidneys. In fact yesterday was one of those days you just want to be over asap. Firstly there was Mike's dodgy results, then a letter from my bank saying someone had been trying to use my bank card fraudulently. They tried buying something online from Curry's for £500! When I told Mike what the fraudulent act was he asked how can anyone spend £500 on curries. (Dex head!) I had only just finished my call to the bank when the hospital called saying they want Mike to come in today for more blood tests and to see a doctor.

I'll keep the world posted if I have any further news. The biggest problem is we've got another Bank Holiday in four weeks time, might as well book the appointment now!

Update: When I checked with my bank this morning I found out they did manage to spend over £400 online! Bank say there is nothing they can do for me to make sure my direct debits go out on time at the start of next month! If I get my hands on the toe-rags!!!!

Cycle 3, Day 1. Say what?

Oh the joys of Mike's treatment. The highs, lows and in betweens of dex et al. continue. It's hard to decide which of the phases is the worst.

• The non-stop chatter


• The extreme views (why did we have to have an election NOW!)


• The "I look like I've been in the ring with Muhammad Ali" puffed up half closed eyes


• The no-one is home or gone deaf day


• The jokes that only Mike finds funny


• The emotional days
  

That is just a short sample as I am sure many will know.

We did manage to acquaint ourselves with yet another doctor yesterday. I think he might have been Doogie Howser. They say as you age the policemen get younger, I seem to have a problem with my vision where doctors are concerned, after all I'm not getting older! Dr Pip (oh yes that was his name) was I have to say extremely good. I'm sure you've all known doctors who somehow manage to get your back up the second they open their mouth. Who instead of saying "Tell me that all again so I can get my head round it" ask you the same questions all over again with a tone that implies you are verbally inept and stupid. He tried the "tell me that again" tactic on Mike but quite frankly, he was suffering from a bad case of chemo-brain yesterday. His answers didn't make sense to me, and I knew all the facts. The staff must think I like the sound of my own voice, I always seem to end up answering for him.

Quote of the day: "I've deximalised"

P.S. Dr Pip really did look like Neil Patrick Harris!

Shazbot Saturday.

Do I need to say more? Poor Paula and Ruth know exactly what I'm talking about. Actually for them it was shazbot Friday, it's only shazbot Saturday because that is when I read their news.

I feel quite guilty reporting that everything is currently fine here touch wood, lots of wood, where's the nearest forest? Oh we're in the Black Country we don't have forests! We had a meeting with Dr SB yesterday, nothing much to report, he merely repeated the results we'd heard previously and commented on Mike's kidneys, which of course we already knew about. We learnt that the doctors at our hospital (may be it's national) cannot write sick notes for out-patients, so Mike's got to get a GP appointment for next week. All seems overly complicated to me! For those who might be curious, Mike's paraprotein has dropped from 31 to 19, but don't ask me what units they are, for all I know it could be barleycorns! Good news any way.

Unknown solider.

I hope he doesn't mind me telling his story, he may not ever know I've told you all. I don't know his name.

When ever Mike is at the Day Unit having treatment he seems to think it is his job to cheer people up and encourage the other patients to talk. Last Tuesday we went to get his Velcade, sometimes I go with him so he has someone to talk to while he waits for a chair to become vacant. We sat in the day ward next to a chap having his chemo for non-Hodgkins lyphoma. Mike started a conversation with him, wanting to know why he got four "lots" in one go! (It's because he has his chemo once every three weeks and so they cram it all in.) We chatted for a while, and then he left.

Across the ward there was another man sitting with his wife and son, having a blood transfusion. About 5 o'clock they both left and he started talking to Mike and me. He asked why Mike was in, I guess because like a lot of MM patients, he actually looks quite healthy most of the time. Mike explained, he loves talking when given half a chance, and then he asked the other chap what he was doing there. He told us that he had gone to see the heart specialist who had done surgery six years ago, as he had been suffering from what he thought was angina. The specialist had done the usual monitoring and blood tests, only to find that his blood pressure was dangerously low and there was something seriously wrong with his blood. He'd been sent from the private hospital over to ours immediately and was awaiting admission. I guess I looked on the bright side for him, assumed that a few days in hospital and a couple of transfusions would solve his problems. Well yesterday we popped up to the ward to sort out Mike's next round of appointments, when who should we see but the "angina" man. I asked him how he was. He looked confused, until I explained we had spoken last week, and recognition passed over his face. He said he'd just had a Hickman line fitted and was just waiting for his chemotherapy. I didn't have chance to ask him anything else as his wife arrived for visiting time.
All I could keep saying to Mike was "What a terrible shock for him and his family." Mike did point out it had been a shock for us too, but somehow it was different, we did have time to think about what his diagnosis meant, the treatments etc. The unknown man has had it all thrust upon him in just one week. I hope I have a chance to speak to him again.

Anti-mole device.

Just when Mike thought I was safe to go back into the garden this happens:

Another hole in the lawn. We're not sure what it is that Toni is looking for, but whatever it is, she's determined to get it. I filled in three of her holes yesterday and it was while I was filling in one this afternoon that she struck again. Never ever turn your back on a Jack Russell Terrier!

You have to be so careful!

I was trying to find a nice copyright free image yesterday so rather than just type what I was looking for into *goggle I searched for copyright free images. A nice list of sites came up and I had a look at a couple of them. The first few didn't have what I was looking for so I continued to try sites from the list. I then came across a very professional looking site. The images on the front page were great so I did a search for the most innocent, simplest of things (or so I thought). Over a hundred results, but oh my goodness stuck right in the middle of the page was an image that had nothing to do with the thing I had looked for. My 18 year old daughter was a witness, and she agreed it had nothing to do with what I had searched for. It could only be described as adult content!

Disclaimer: *Other search engines are available and this is not an endorsement of the goggle product.

The advantage list.

Finding out that Mike had Myeloma was like opening the curtains one morning to find the house was floating in the middle of the Atlantic. Being mostly positive people (look I'm a woman and I'm allowed to stray occasionally) we have decided to seek out the advantages of Mike's affliction. As they say on tv, "In no particular order."

1. I now have a really easy way of distinguishing between he who I live with and he who I divorced. There is Myeloma Mike and there is the other Mike. Yes I know, what are the odds on marrying two Mikes. At least I didn't have to worry about talking in my sleep. ;)


2. We have made virtual friends with a whole bunch of interesting, mostly insane people who seem to think that life with myeloma can still be humorous. There is always someone's blog to have a giggle at, or more precisely, pmsl.


3. From Mike's point of view, he can now shoot the parking warden who gives him a ticket for being 30 seconds late. His reasoning being, that he might be dead by the time the case gets to court! Please note, Mike isn't actually a violent man, but he can dream!


4. Mike has life assurance, so if he doesn't last, I get to have my world cruise. Actually we both do (have life assurance I mean), so it doesn't actually matter who pops their clogs first, I might still beat him to it. (We're a very competitive couple, you should see us playing Scrabble!!!)


5. It has given us both a good kick up the proverbial and instead of complaining about the weather, we just dress for it and go out and enjoy life any way. Funny how it all looks so much better when you think it might be in short supply.

So with all those paddles and the odd bloggy lifeline, we should be able to survive.

If you are not a carer DO NOT look.

Like I said if you are not a carer navigate away.

I'm telling you it's not for the sufferer.

You have been warned, this is you last chance.

OK you asked for it.

Boo!

It's quite simple really, I'm not sure how I am ever going to cope! Let me explain. Before Mike was diagnosed it was him that did all the gardening, not because I didn't want to, but because my poor back just cannot cope with more than a very short period of bending (my own fault having had 5 kids.) For now that task has fallen upon my shoulders. I desperately want to do it properly and get my garden looking nice, but like I said after 30 minutes I'm in such agony that I end up sitting on the ground crying with frustration, angry at myself and at the myeloma for taking my gardener away. I'm tired and torn. On the one hand I want to do all I can to help Mike, but when that means running up and down stairs fetching and carrying, well quite frankly enough is enough, my back hurts, my joints are playing me up and yes I'm fatigued too!

Mike is convinced that once his SCT is over he will be as good as new, or better even! He imagines that once he is recovered he will be able to run a marathon, go down the gym three times a week, have perfect abs. etc. It reminds me of the old, old joke:

Can I play the piano once these are off?

A doctor has come to see one of his patients in a hospital. The patient has had major surgery to both of his hands.

"Doctor," says the man excitedly and dramatically holds up his heavily bandaged hands. "Will I be able to play the piano when these bandages come off?"

"I don't see why not," replies the doctor.

"That's funny," says the man. "I wasn't able to play it before."

I think you get the picture!

I'll have a sticky bun with that.

Mike went to the Day Unit for his dose of Velcade on Friday. As usual they did all the blood tests before hand, just to make sure he still has some left in him to dilute it down. It all looked really promising for a quick get away, the Velcade was there waiting for him, so it was only the formality of the blood work that would cause a delay, and what a delay. An hour and a half later the results came back (it was 5 o'clock by now) and showed that Mike's kidneys were not doing too well (creatinine 166 μmol/L), so he had to sit there for an extra hour having a saline drip and have another blood test this morning.

We got to the ward nice and early (8:30) as requested to collect the blood forms with their "urgent number" on them. We went downstairs to get the blood drawn (no not a pretty picture), took the print out of counts and a sample back up to the ward and then we were told we would have to wait about an hour for the lab to do the kidney function tests, so we might as well go and have a coffee. Back downstairs and into the main hospital to Greggs for coffee and a bacon sandwich.

Now this is where things become really surreal. Mike was due to see his consultant next on May 10, but we received a letter on Saturday changing the appointment to May 17. Oh well we thought, there wasn't much difference and if there was a problem, we'd soon see someone on the ward. So we're standing in the queue at Greggs, waiting for our bacon sandwiches (well buns actually) when who should pop up behind us......... Dr SB himself. He instantly started chatting to Mike about how he was doing, had he got the results for today, how was he feeling now? Mike said he was feeling fine, pointed out that he had been fine before his last Aredia infusion, and asked about whether he should go ahead with the treatment due tomorrow. In essence Mike had a complete consultation. He was given a new dosage of the drugs he is taking and given a new appointment time, all while standing in the queue at Greggs in the middle of the hospital! Bottom line is, you can't get a proper appointment to see him in clinic for at least four weeks, but you can go and buy a coffee and see him straight away! We sat and drank our coffee and laughed until our sides hurt. I'm not sure what it is, but SB has the ability to instantly put us at ease, and have us giggling hysterically at nothing! The contrast between him and his colleague SH is startling, as they say, chalk and cheese.

(Mike's creatinine was 155 μmol/L today and Dr SB has cancelled all Aredia infusions.)

Solidarity

Today are thoughts are with Phil and Cassie. (No I haven't forgotten the rest of you!) Keep up the good work. Like the thousands that now follow you on facebook, we are rooting for you.

It's a funny old world. Three months ago we knew nothing about Multiple Myeloma, or American Football come to think of it! Now we know loads more about MM and a tiny bit more about the football, including the fact that some guy kicked a ball 44 yards just as time expired helping his team win 31-29 back in 2002.

A foot note, above it all.

I try not to bog the blog down with too much negativity, but sometimes things just have to be said. Because of Mike being so ill over the weekend I thought I'd try and find out why. Yes we'd been told that Aredia (pamidronate disodium) can cause slight flu-like symptoms, but may be neither of us has ever had flu or at least not the type of flu Aredia mimics! A simple search found the manufacturer's site. OK some of the words it uses are a bit medical, why say temperature when you can say pyrexia (not the oven-proof stuff it turns out), but even so the first few lines contains the instructions in bold:
"Due to the risk of clinically significant deterioration in renal function, which may progress to renal failure, single doses of AREDIA (pamidronate disodium) should not exceed 90 mg and the duration of infusion should be no less than 2 hours."
And that is for breast cancer patients it turns out! For myeloma patients, whose kidneys have a hard time of it any way, the time in the prescribing leaflet is four hours!
Mike's infusions have been taking one and a half hours. No wonder Dr SH (weekend consultant) thought his kidneys were failing!

Mike has an appointment to see Dr SB (his own consultant) today and he intends to raise the subject of Aredia with him. That and the fact that Dr SH thought it wise to prescribe Augmentin and Clexane on Mike's discharge when the leaflet for Augmentin clearly says not to be taken with drugs to prevent blood clots! Now would it surprise you to learn that Dr SH's first qualification was as a pathologist, his second as a paediatric haematologist and that his job before arriving at our hospital was Head of a haematology lab? To quote Mike "That was why he was trying to kill me!"

Quick update.

Just a quick update. Mike is still alive and has gone back to work today. It would seem all he really needed was a good night's sleep and some decent home cooking. Let's just say his hospital stay was less than successful and when I got him home yesterday afternoon he was possibly in a worse state than when he went in, with the exception of the temperature. At least he's sorted now.

It turned out that the reason they kept asking questions and seemed to be filling in endless bits of paper was......... they had lost a trolley with Thursday's notes on it, including Mike's. In my opinion we need Matrons back on the wards and staff who want to do a job and not just use work as a social event! There are some really good nurses out there, but my goodness there are some bad ones too.

Easter Egg?

Finding a doctor in a haematology unit is like finding an Easter Egg in a piece of software. Everyone tells you it's there, but finding the right combination can be tricky!

It all started yesterday, well Thursday I suppose. Mike had his Pamidronate on Thursday and yet again it made him feel ill, by evening his legs had swollen and he was getting a lot of bone pain. He took some pain killers before bed, but was restless through out. I was aware that he was tossing and turning and did ask a couple of times if he needed anything, but I didn't wake up enough to realise how ill he was feeling. When morning came and I took his temperature it was 38.2. Oops, how did I let it get that bad! So I called the CHU, and after an eternity someone answered the phone.
"What's the problem?"
I explained.
"Can it wait until the day case staff arrive?"
I don't know you silly woman is what I was thinking!
"I'll call you when they arrive."
5 minutes later the phone rings.
"I've just realised it's a bank holiday and there are no day case staff. Can you take him to EAU?"

Now I'd never heard of EAU and thought she had meant AEU you know Casualty or ER.... I was wrong, there is something called an Emergency Admissions Unit. Wow you learn something new every day! The staff there were brilliant, by now Mike was completely spaced out and the question and answer session was mostly with me. It made me realise just how important it is to have someone with you when you are going through all this MM and treatment. Mike couldn't remember much more than his name never mind what treatment he was having and on which days!

They took him off for a chest x-ray, gave him fluids and IV antibiotics, anti-sickness drugs and a nice dose of Tramadol. The Tramadol just about finished him off and no sense was had from him til tea time, although he did manage to eat his lunch, poached fish in parsley sauce!

After about four hours in EAU Mike was taken up to the CHU, (just in time for his aforementioned lunch. ) Eventually the consultant on call, Dr SH turned up. Yet again I had to explain Mike's treatment. (Why weren't his notes available on the ward?) Yet again I got the impression I was talking a foreign language, worrying as I was talking to a haematologist! May be it is me!

Well I'm off to visit Mike now. They've already told him he won't be discharged today, so I face a second night alone, good practice for Mike's SCT. (If i was a suspicious person I might think that Mike is trying to tell me something, tomorrow was going to be a day off from work for him, with no appointments to interrupt our day! He's managed to get out of it!)