Wednesday, 26 May 2010

NHS money saving exercise?

I think we have discovered a cunning plan by the NHS to save on the 'leccy, that or the staff were in the mood for a rave but couldn't afford the glow-sticks.

Sitting in bay 1 yesterday was a bit like having a picnic at Sellafield. I'd got Mike on the right of me, who had been down for his nuclear imaging at lunchtime, Dave on my left who had popped down for radiotherapy at 3:00 pm and Tony across the way, who had also been for nuclear imaging. Tony had also had a day trip off to the QE in Birmingham, they have better stuff over there, (well that's what Brummie Mike always tells me). Tony had been told by the team over in Brum that he was to keep away from pregnant women and young children for 24 hours, still they stuck him back in his bed up the corner, afterall, pregnant women and young children are rare on CHU. They might at least have put a warning sticker on his forehead!

During the afternoon visiting, while Dave and Tony were off being treated, Mike had an echocardiogram done. Ooh, ah, pretty pictures. Mike couldn't see the screen, but I sat there watching his valves go flip, flop, flap, (well they opened and closed like they should, but that's not fun words.) There was sound too, whoosh, whoosh whoosh. I should have asked if we could have copies printed to put in the family album.

Quote Of The Day: Tony said he was going to audition for The Simpsons, as the nuclear rod.

Tuesday, 25 May 2010

Day 19 in the Big Brother House

Actually it's day 19 for Mike in hospital, but it's the same sort of torture. There isn't much to report, 3 more chest x-rays to see how the pulmonary oedema is doing. Nuclear imaging today, but I have no idea why. Still no sign of the renal expert, possibly because the ultrasound they did last week didn't show anything abnormal. Those of you out there who are carers will know exactly how I'm feeling I expect. There's a lot of not knowing what is going on and there is never anyone around during visiting time.

Wish I had more to tell you all.

Wednesday, 19 May 2010

Scratch that.

Just had a call from Mike. They've decided he had better stay in as his kidneys haven't returned to normal.

Oh and as much as I love you all, if anyone else says "best to be on the safe side" I will scream.

Tuesday, 18 May 2010

Fingers crossed.

With a bit of luck and a following wind (no actually forget the wind) Mike will be discharged tomorrow. I'm not going to bore you all with the details of the ups and downs of the last few days, all I will say is that it was me who bought Mike an ice lolly, which in my opinion was the turning point. I just hope his treatment when he has his SCT is better than he has got some of the days.

Update: Mike has been told this morning that they are stopping the Velcade. (I'm not happy.)

Saturday, 15 May 2010

Rising the dead to the world

Please don't get jealous Toni, but I took the drip stand for a walk today.
I felt awful yesterday with headache, but got a bit of sleep last night and am able to drink fluids a bit again after iv antibiotics.
Thanks for all the prayers you lot... very heartening xxxx.
I'll be out to hug you soon Lorna, and help with the shopping.

Update by Lorna:
The improvement was short-lived. By the time I visited, Mike was in a terrible state again and the antibiotics have taken their toll.

No news as such.

Just to let everyone know there is no news. The hospital is still in the dark about Mike's illness, although he has now developed a chest infection, possibly from aspirating some food. A very nice lady came from SALT (speech and language therapy) to assess Mike's swallow. She has put him onto a dysphagic diet until Monday when she will come back and reassess him.

Yesterday was generally not a good day. By 9:00 am Mike was so distressed by the lack of painkillers (he'd been asking since 4:00 am) that he called me and asked me to come and help him. Luckily I am only a 15 minute walk away, and by 9:30 am was installed in his room. I say installed, because there was no way I was going to leave and no way Mike wanted me to. Let's just say some of the staff are great and some less so. Mike was so incapacitated by his headache that he could hardly move. I was able to ask for iced water to rinse around his mouth, put the pillow cases back onto his pillows, wrap a jacket around his shoulders, they had put the drip in during the night when he didn't have a top on and he was getting cold. I pestered them for painkillers, which he eventually got at 11:30, probably because I said he wouldn't be able to have the lumbar puncture until his head was a little better. By 2:00 pm Mike's temperature was 38.5 (a fact that was not passed on to the sister in charge) and so when at 4:30 pm the nurse came in and I mentioned he seemed a little delirious from his temperature, she said what temperature. It was at this point that the chest infection was discovered and the antibiotics started.

I realise that all sounds like a really big moan, but the truth is that a week has passed, Mike is no better, in fact worse when the chest infection is considered. Every other day a different doctor comes and looks at him, asks him exactly the same questions, does exactly the same examination and says exactly the same thing, "we don't know what it is. "

Friday, 14 May 2010

Friday morning downer

Well it's 6:30 on a Friday morning. Mike has just called to say good morning and update me on his night. Not good. He has only had a couple of hours sleep. He has been trying to drink, but the water keeps coming back down his nose, so at 4:00 this morning they put him back onto IV fluids. I spoke to Dr A yesterday and I know they are searching for answers to his problem, but at the moment none of the puzzle pieces seem to want to fit together. The lumbar puncture didn't happen yesterday, Dr P wanted to wait until they had received the MRI report of his brain, he didn't want to do an invasive procedure if the answer could be found another way. Needless to say the report didn't arrive to my knowledge and so it will probably happen today.

We've just got to try and stay positive.

Thursday, 13 May 2010

Photo album for Mike

Not a good picture of moi, but what the heck. At least Mike won't be able to forget what I look like.

Wednesday, 12 May 2010

Working his way through it.

I am beginning to suspect that Mike has a secret. I think he has a medical procedure encyclopaedia hidden under his bed and is doing his utmost to work his way through it. Today he must have opened the page on 'L' as he is due to have a lumbar puncture tomorrow (ouch says I). Not satisfied with two MRI scans, a barium swallow test and a chest x-ray, that's four tests in six days people, he wants to make it five in seven. That doesn't include all the blood tests of course, well they don't really count when you've got mm do they! (It is weeks like this that make you realise how lucky we are to have the NHS and not find ourselves with a pile of bills!)

Mike is pretty much the same as yesterday. Still dribbles, still cannot talk clearly, still cannot swallow or open his eyes properly and he still cannot puff out his cheeks. He has begged them to let him out for a bit, but the doctor said they couldn't in case he twisted his neck strangely and paralysed himself.

Tuesday, 11 May 2010


If I have already told you all this then apologies for repeating myself.

The doctor Mike saw yesterday has decided Mike needs a second MRI on his skull, as without it the neurology department will not let them refer him. Hopefully they will do the scan today. He is feeling better in himself I think, although the problems remain with his mouth and so his speech. Mike must be getting back to himself as he called me to say he'd had a run in first with one of the nurses and then with a pharmacist over his drugs. Last Tuesday he was prescribed an anti-fungal, an antibiotic and had his dose of Aciclovir increased as there were signs of an infection in his urine and as they weren't sure at the time gave him everything to cover whatever it might be. It was meant to be a five day course which Mike started on Wednesday. So by now he should have finished. BUT the drugs are written on his notes from admission and so as a doctor hasn't crossed them off, he has jolly well got to take them, well Mike says NO NO NO! So the pharmacist came to speak to him. A similar conversation was had and eventually she left saying "I'll leave you to it then."

I'm still scared stiff by it all and sort of numb. There are nervous butterflies in my tummy all the while and I just don't know what to do with myself when I'm not with him at the hospital. I'll update after visiting this evening if there is any news.

Sunday, 9 May 2010

Sunday news and Quote of The Day

I've just got back from visiting Mike and I'm so exhausted that this post will be just the bare facts. Mike is feeling much better than yesterday. He has managed to eat and drink and has been given two units of blood over six hours. I wasn't there, but Mike tells me someone came to speak to him this morning about his MRI scan. There are no myeloma deposits (I didn't even know they thought there might be) and no lesions. They have found a possible source of his headaches and the numbness in his lips, cervical spondylosis/spondylitis.

His lips and tongue are still swollen and he is still very sleepy.

Quote of the day, and I'm sure you all know what's coming: "How can I have cervical spondylitis, I haven't got a cervix?" I kid you not, that is exactly what Mike said to me when I repeated what I had read.

Saturday, 8 May 2010

Very quick update

Firstly thank you to everyone who has left messages of support.

I've just got back from afternoon visiting. Not good. Mike is feeling worse than when I left him yesterday. Over night he started to feel nauseous so they gave him anti-sickness medication. Now I'm no expert and know nothing about such things, but aren't they supposed to stop you being sick? Because if that is what they are meant to do, they aren't working. The doctor who is on over the weekend has decided he needs two units of blood and liquid morphine for the headache. The nurse was just giving him his morphine when I arrived. Needless to say it only stayed down a few minutes. I hate to say it, but everytime he goes into hospital they seem to make him worse.

The tough cookie crumbles.

The English language is a mysterious thing, full of strange and sometimes contradictory expressions. One example is of course the title of this post. You can be "one tough cookie" a phrase that on occasion could have been applied to me. Generally I have been a tough cookie when it has come to Mike's illness, but this last week has stretched me to the limit, and this cookie crumbled big time on Tuesday.

It was then that the postponement of Velcade was mentioned, originally for a week to give him a break. I felt as though the house of cards we'd been building had fallen on my head. The staff in the day ward were wonderful and tried to reassure me that it would all be fine. (I know, it all got worse, but they weren't to know.) Little Miss Hurricane said that although the haematology support group no longer existed, she knew that one particular lady was still helping people over the phone and suggested I might like a call from her. Now those of you who know a little of my past will realise how big a step it was for me to say yes, but I did.

Now I am well aware that I am far from normal and that my reactions to many things in life do not sit well with other people. But for me the telephone call was a complete write off. The lady I spoke to sounded very nice, and I'm sure that in person she is very pleasant, but as her opening gambit was, "both my husband and I have myeloma", it was clear from the start that it wasn't going to help me. You see what I really needed was to talk to someone who was in exactly the same position as me, someone who was a carer and not a sufferer, someone who I could say my biggest fears to without me thinking I should worry about them being ill. Well I listened to her stories of treatments for them both and answered her questions about the Myeloma UK site and their infoguides, and when she had finished she asked if I had any questions. I obviously said no I couldn't think of any. You see it wasn't information I was looking for, but answers to questions we all fear to ask.

Well that's the way the cookie crumbles. I'm a tougher cookie for it, and when all this is over, I'm going to make damn sure there is better support for those carers who need not information but emotional support around here. Not everyone can do it over the telephone.

Friday, 7 May 2010

Green eyed or what?

Well it seems that Mike's jealousy (or should it be envy, I've never quite known the difference) got the better of him, and so, not wanting to be out done by Paula decided he wanted a tea tray of his own. Unfortunately the hotels around here are not quite so accommodating, and no tea tray is supplied.

At first it appeared that he was simply fatigued from the Velcade, but to be on the safe side they asked him to "pop in" last night to have some blood tests done. Four hours later they said everything was OK (relative to what they have been since diagnosis) and to come back today to see a consultant. Well Mike was extremely tired and apart from trips to the loo, slept from 9 last night until 11 this morning, I didn't wake him as I thought the rest would do him good. When he finally came down he still looked terrible. His face is all puffy, his lips doubled in size and his tongue swollen. Every time he tried to drink liquid leaked out the sides of his mouth, he said it was like he had been to the dentist and was still numb from the Novacaine. So after he'd had some brunch we went off to the ward to see someone.

They realised the second they saw him that he wasn't right (is he ever?). We were in very capable hands though, Dr. Rachael, (or it could be Rachel I didn't check the spelling). Mike had seen her on Tuesday and said how efficient (just like the latest gas boilers) and thorough she was. She asked him questions, prodded, poked, listened, tickled (his feet) and tested his reflexes. When it came to his tongue she asked "Does it look big to you?!" Actually she asked if it looked swollen, and I have to say it did, to me it looked twice the size. Assessment complete she went off to consult with Dr SB. A few minutes later she was back, with SB in tow. Mike repeated a few of the details and SB decided it was best to suspend all chemotherapy treatment, possibly ruling out Velcade, and that a MRI was needed to be on the safe side. (My panic at the prospect of no Velcade is overwhelming.)

Dr R went off to arrange the scan and about 20 minutes later came back with a wheelchair saying there was an empty slot now, so there wasn't time to wait for porters, she was taking him there herself!!! (I cannot praise her enough, Thornton's will be purchased tomorrow!) On the journey down she told Mike that she had been told that if anything went wrong she wasn't insured, just as well that Mike and I are old-fashioned and under the circumstances wouldn't think of suing. We have no idea when the results will be in, so in the meantime Mike gets a holiday away from me and the dog.
I did have photos, but cannot for the life of me get them to appear where I want them in the blog.

Tuesday, 4 May 2010

And now on a lighter note.

The support act last night was Lesley Roley and she was absolutely fabulous. She only performed for half an hour, which was a shame as we really enjoyed her performance. I've tried to find a video on You Tube, but the only thing I could find was a mixture of interview and singing. Hopefully you will get the idea.

That'll do it.

Every thing was great last night until Don sang this:

Monday, 3 May 2010

It's finally here.

When we were children the build up to Christmas seemed to take forever. The advent calendar always looked as if there was still a hundred doors to open, but eventually Christmas Day would arrive. The last six months have therefore been complete torture for Mike.

As a young man he drove around France one summer, along with his 8-track and a copy of the album "American Pie" amongst others. By the time his road trip was over, he knew every word to every song (well that's what he tells me) and even now he can sing the whole 8 minutes and 36 seconds of American Pie without even thinking about it, a fact he proved once when we were on a short break in Benidorm (everyone has to experience it at least once.) While sat in a very nice Irish bar the band started to play American Pie as a background song. Mike was on his feet faster than you can snap your fingers, had grabbed a microphone and joined in. I think you can guess that Mike is a big Don McLean fan.

Well last October Don McLean announced he would be touring Europe, including a date at Symphony Hall, Birmingham. I was straight to the box office to get seats. When I told Mike he was really excited, he still is. We wrote the date down and as soon as we got our calendar for this year it was the first date we wrote down. May 3rd 2010. Of course since October things have changed quite a lot. Where once a song would spark a happy memory of youth, it now is tinged with a little sadness, for what has been and what may never be again. Mike has watched his TV interviews over the last couple of weeks with slightly moist eyes, and has already said several times that tonight may be his last chance to see Don in concert. I'm just hoping security don't stop me when they see the size of the bag I need to carry all the boxes of tissues required for this evening's performance.

The only other person he wants to see in concert "before the end" is Joe Cocker, so if anyone knows him, tell him it's got to be before November 1st 2010 or after Mike has recovered from his SCT. Thank you.