Where you been?

I bet you've all been wondering where we've been the past week. No? Shame on you!

It's been a funny week, that's funny strange not funny ha ha. I could have done with it being funny ha ha, but what the heck we can't be rolling around on the floor like hyenas all the time. Talking of African wildlife, I'm feeling more and more like a grey wrinkled specimen every day. Hippo or elephant, take your pick. Paula's dentist might have told her she had chubby cheeks, well she's got nothing on me, I am suffering from everything being chubby. I blame Mike for getting ill and forcing me to comfort eat and drink. It is to my shame that I post the following photo, taken the day Mike was due to jet off on holiday.

So in light of the fact I have a very important event in June I have decided to D.I.E.T. I don't like saying the word, so like a dog and the V.E.T., it has to be spelt. I've only been at it a few days, but already I'm dreaming about illicit pleasures like custard doughnuts and toast with butter. I miss chocolate. In fact yesterday, while I was sorting out some needles, I just happened to remark that I was missing a nice bit of 70% cocoa choc, which resulted in the following conversation:

Me: I don't think I can go for more than a week without chocolate. I think I'll give up on this diet lark.

Mike: Give up and I won't talk to you again.

Me: Double advantage points then.

I should add hurriedly, that Mike is in no way responsible for my decision to slim and his remark was said in jest, mine, given the lack of sins, was probably not! So I've got 19 weeks to lose more weight than your average supermodel.

For those still interested Mike's counts on Friday (28/1/11) were:
WBC: 4.9
Neutrophils: 2.5
Platelets: 70

Fancy meeting you here!

After a fun packed morning on the phone (that's another story) Mike had an appointment at NX (New Cross) with Dr SB today. It was the usual chaos of:

Nurse: You're only booked in for bloods.

Me: But QE said see Dr SB or Dr AB

Nurse: I'll call him.

Mike: He was just going off somewhere with Dr AW, I saw them as I arrived.

Nurse: Oh, they must have been going for a coffee, I'll call his mobile. It's strange, the pair of them have been giggling all morning. (I should point out here they are both male consultants, draw your own conclusions.)

A few minutes later:

Nurse: Go and have your bloods taken and then AB will review.

Mike: OK.

So we duly went off and saw Jodie the local resident vampire (who has a gorgeous staffie by the way). Mike hung around and watched the machine sorting out his counts and then we took the print out back upstairs to be "reviewed".

So we are sitting in the waiting room, minding our own business, as you do, when suddenly we hear a familiar voice enquiring where Mike is. Mike is then greeted with "Hello trouble. How are you?" No it wasn't AB, but the slippery SB. Seems it didn't take him long at Greggs today. Now I might be mistaken, but I think he was actually pleased to see the pair of us. We've always had the nasty habit of making him laugh, goodness knows why.

Oh and counts for today:
WBC: 3.85
Neutrophils: 1.46
Platelets: 45

Weekend endings.

Despite having the attention span of a gnat, I have had a weekend of finishing things off. My daughter now has two wrist warmers:

Toni has a woolly jumper to wear down the park:

I even spent some time sorting out a few things in the new bathroom behind Mike's back, so the loo roll holder and towel rail are now in position.

Did I say I was cold?

Last winter during a very cold spell I thought it would be a good idea to knit a jumper to make sure no one got cold while walking round the park. Of course before I could finish it the weather became warmer, Mike was given his diagnosis and I forgot all about my project.

It was only today when I was tidying a drawer that I found the wool and needle stuffed at the back, you know the way you do. Coincidentally the weather has again turned chilly so I thought it might be best if I attempt to finish it. Of course me being me I've lost the pattern. Luckily I'd gotten to a point where it is all straight forward and I think I can manage to finish it. I did however need to check it will still fit so there was only one thing to do, try it on.

Now don't look like that Toni, it's for your own good. Think how much better you'll feel with a warm back. I bet Bud will want one when he sees yours. Honestly Toni, you look really trendy.

That's better. See it is your colour. 

Doldrums, diet and dettol

Toni is a bit fed up too.

To be honest there isn't much happening around here. Poor Mike has had a bit of a bad day and spent it curled up in bed, all that drilling yesterday must have worn him out. It isn't even as if I can cook up a storm as Mike is off most of the food he would usually eat. Cornflakes are out, fruit and fibre is in. No to ham but yes to bacon. One minute bananas are favourite the next it's apples and 30 seconds later clementines. Difficult to shop for when the nearest shop is a good walk away. Mike is clearly struggling mentally with the way he feels, he finds it hard to do nothing all day, but even making himself a cup of tea is too much at times. It could be a long six months for him.

The biggest problem for me is cleaning. I've tried various products with various scents, but so far all of them have made him feel nauseous. No I'm not using them to clean Mike, I use a brillo pad for that. It is incredibly difficult to keep the bathroom sterile when everything upsets his sensitive sense of smell and delicate stomach. I tried getting him to peg his nose, but that wasn't a popular idea.

It's war, choose your weapon.

As you all know, we've recently (finally) had our bathroom completed so it was time for a few finishing touches. You know the sort of thing, a towel rail, a soap dish, a loo roll holder and a shelf. We'd ordered them online Monday afternoon so that Mike could have a say, rather than me going into a shop and choosing for myself (which I should have done). After a few heated discussions we found a happy medium, although I may only have won because Mike got tired.

Most of the stuff arrived today and I was eager to get started with the drill. That was where war really began. Before Mike came along I was quite independent and had my own power tools, a drill, an electric saw, an angle grinder and of course a tool bag full of useful items. Then Mike arrived bringing along his own drill, another angle grinder and a jigsaw. So until recently things went smoothly as we could both work at the same time on the same job. Then Mike wore out his drill trying to put up a kitchen cupboard, my walls are a bit on the tough side. That left my drill all alone to do the work, it too decided it was all too much and started spitting out bits of copper from the motor armature. So that meant we had buy a new drill, but who does it belong to? I say it is my drill as I went into the shop to buy it. Mike says it is his drill as he is more likely to use it (I'll use it more on him if he doesn't watch out!) To make matters worse it came with a "free" drill driver.

So the war began. We both wanted to play with the new drill. Mike said I was too short to reach and I said he was supposed to be resting. We tried to take it in turns but it was hopeless. I thought maybe he could drill and then I'd use the drill driver but he wouldn't shift out of the way.  In the end Mike did eight holes and I did four (and all the tidying up afterwards.)

Employment wanted
Handygirl with own equipment available for diy tasks.

Ok you win.

Mike had an appointment with his consultant at the QE this morning. He was a tad concerned about sitting in the waiting room, but we had little choice. Luckily we didn't have to wait too long though as it turned out. Despite reassurances on Friday that he would see P.M., we didn't get the chance to even say goodbye.

Instead of P.M. we were seen by Dr Shingirai, a wonderful doctor who looked after Mike some of the time while he was on ward. Dr S. originally comes from Zimbabwe and had many a colourful tale to tell. While he was removing Mike's Hickman line he chatted to Mike about how as a lad he messed around with car engines with his dad. They would hoist the engine out the car and clean it inside and out. As Mike was a mechanic in a previous life and had fine tuned cars himself, the conversation was enjoyed by them both, I just sat there smiling politely and tried to watch while he cut around and tugged at the line!

On the way home Mike told me how Dr S. had told him how different things were in Zimbabwe. He had told Mike that they only had one needle each, which they sterilised after each patient and carried around with them in their pocket. Like Mike related to me, they had to be careful how and where they sat down. 

Today's counts
WBC: 3.5
Neutrophils: 1.2
Platelets: 20

So that's it for the QE, no more appointments with PM, hopefully for ever more. New Cross here we come!!!!

The Long And Winding Road

No not The Beatles, our walk to the shops. Today Mike, Toni and of course me took a walk to buy Toni a few pet essentials. This was partly due to the fact that somehow over the Christmas period, what with one thing and another, I or A. N. Other member of the family managed to misplace Toni's harness that she wears when she goes for a walk. I realised it was missing early last week and had been using her car harness as a short term remedy, but it wasn't ideal.


So this morning we set off on our walk to the retail park which is about a mile and a half away (that's each way!) I have to confess I was a little apprehensive, but Mike said he felt fine so off we went. Now to be fair, as the crow flies it is actually less than a mile, unfortunately there is too much housing in the way to get there using less shoe leather.


We bought Toni her new harness, a new bone and three squeaky balls. While I was paying Mike was showing Toni the tropical fish. She stood there on her hind legs, front paws on the glass, I was just waiting for the assistant to say "can you keep your dog away from the fish!"


We walked back through the park expecting the usual Sunday League matches to be on, but the field was deserted, but for the rooks and seagulls. Toni loves chasing big birds, so the second her lead was off she took off like a rocket. She never catches them, but it  doesn't stop her trying.

The round trip took about two hours, we wouldn't have won any races. But if you think that it is only 22 days since Mike got his stem cells back, I reckon it was worth an honourable mention. While I was visiting Mike in hospital I spotted a notice board with QE patients on it who competed in the last Transplant Olympic Games. I noticed that one of them was a BMT patient. So there is still hope that Mike might get that Olympic gold.

Spot the difference.

Once upon a time before PCs, Wii, PlayStation, Nintendo DS and even before Commodore 64 children had colouring books, dot-to-dot and spot the difference to keep them amused. I always enjoyed the spot the difference games you found in newspapers, magazines and comics. The only problem was that often there would be a flaw in the paper they were printed on or that there would be the odd spot of misplaced ink, making it difficult to spot the real 10, 15 or 20 differences between the pictures.

As time moved on they started to create spot the differences online. Some of these games are so awkward that often the difference is hardly noticeable or has such a precise area in which to click that I usually end up clicking for a hint!

Talking of spots, Mike's folliculitis has cleared up and all that remains is a few blotchy marks, a bit like chicken pox.  I have to keep threatening him with white cotton mittens as he just will not stop scratching. Mike is doing really well (other than the bloody scratching) and even managed to make himself a cup of tea today and ME a coffee (wow) and then went on to clean the kitchen surfaces (DOUBLE WOW).

Did I mention spot the difference? Well can you?



False alarm

Mike has had to go back to the hospital today to have some blood tests done. As I don't drive and there was no one else available it was either public transport or ambulance to get there. So groovy ambulance it was. I got left at home as they are not allowed to carry anyone other than the patient. Mike has been feeling extremely tired as as such thought that his Hb must be really low. Turns out that he was wrong, his Hb had actually gone up from 10.3 on Tuesday to 11.4 today.

Mike has been seen by the doctor on the day case unit who has decided to alter Mike's anti-sickness and stop the 4g a day anti-biotic, which seemed to be the cause of Mike feeling so unwell.  All in all I'm thinking the visit was a good thing for us both. May be now I won't be woken every hour by poor Mike's retching and I won't be so tired and frazzled that a remark like "I feel so much safer at the hospital" feels like a stab in the back. Thanks for that.

On safer ground, I have finished my "big guns" project. It looked quite good in the picture I saw online, on me it looks...... well I'll let you all decide how I look.


Hooded Scarf.

I'm a garden gnome too Paula !

I may possibly, (well it's always open to debate,) have once been as hysterically funny as Paula. Unfortunately I have a lot on my plate and that has stopped me being funny (I quote someone else there). Apologies to anyone who visists the blog expecting humour, a full refund will be given on request.

Too many fingers and three thumbs.

Secretly, I've been knitting not one but three projects! I know it's not the best idea, but each of them has their own merits. One is an endless circle first of rib then stocking stitch which was perfect for the train journey to see Mike. A second was started with quickness and ease in mind using 6 1/2 mm needles, that one is almost finished. The third, well that project was started because youngest daughter spotted some wrist warmers in Dottie Perkins and she duly requested that I knit her some. This is my effort so far. One down one to go.

I was doing fine, until I came to the thumb. What a nightmare that was. With only 12 stitches on 3 needles I found that every time I moved onto a new needle, the other two needles would go AWOL! I was about to parcel the darn thing up and send it Northwards for either Paula or Ruth to sort out. (I know I should have asked for advice but that would have meant waiting for the reply!)

Is this where I'm supposed to say what the yarn is and where I found the pattern?
The yarn is; Rowan Silky Tweed in 'Jazz' (80% lambswool 20% silk) and the pattern is; well one I made up having looked at several (I mean 50, none of which daughter liked). I know it's very simple, but we love the double moss stitch, it seems to really suit the yarn.

Mike continues to take his 1g of anti-biotic every 6 hours and the anti-sickness tablets every 8 hours to combat the nausea cased by the mega dose of anti-biotic. The anti-sickness unfortunately causes drowsiness or should that be fortunately?

Oops, ouch and oh dear.

Now that Mike is back home, Toni has finally been allowed to open her present from Buddy, that arrived just before Christmas. I have to confess that when she opened it I didn't have my camera handy so there aren't any photos of it in all it's glory.You see Toni was very quick to relieve the poor thing of its tail.

As you might just spot, Mike is looking rather bruised due the lack of decent platelets. It has also resulted in a rather unsightly plaster having to be applied.

He bumped his head on a hook on the back of the toilet door in the hospital and then this morning he knocked off the scab and it was getting blood all over my pillow cases.

The really good news is that..... wait for it....... my bathroom is nearly finished. Faint, faint. Mike doesn't care either way as he is wearing himself out sleeping.

Home sweet home.

Mike is home safe and sound. He is lying next to me fast asleep with his woolly hat on, the house isn't as hot as the hospital and he is missing his hair to keep his head warm. Toni is at his side refusing to leave him, just in case he disappears again. It is so good to have him back home.

Thank you everyone who has commented on and read the blog, thought about and cared about us over the last few weeks. I don't know what we would have done without you.

Fingers crossed oh it's day +16

This picture is the very first time I saw Mike.

Hopefully tonight will be Mike's last night in a foreign bed and that from tomorrow he'll be back where he belongs, under my beady eye (thanks for that Paula). I know that when I get him home I have got to take really good care of him and not make him do the ironing for at least an hour or two. He tires very easily as most of you know either from personal experience or from looking after someone in the same boat as Mike.

Today's counts:
WBC: 2.8
Neutrophils: 1.9
Platelets: 29

Nothing to worry about. They haven't given Mike any G-CSF since Friday night and they say the drop is normal. He will have bloods taken in the morning before he leaves just to check things are ok. Then it's off home until Friday when he has to come back to have his bloods checked again.

Day +15 Counts.

In the light of Mike's post yesterday, the title of which caused a few to panic (I think they thought he'd died) I decided to make today's title simple and to the point. The doctor didn't give us yesterday's counts so difficult to see the whole picture.


WBC: 3.2
Neutrophils: 2.2
Platelets: 20 (Increase darn you!)

We've had another afternoon watching the FA Cup, things would have been much better if they served beer in this hostel.

We are also realising what a pain it is not to have a Hickman line. Mike is on his fourth cannula in three days and each time he has a new one it takes at least three attempts. Mike's arms are looking a bit sorry for themselves.

The Big Bad Day (+14)

Well folks, this is the day that is the difficult one to write about. Wondering why?
overnight they pumped 2 pints of red cells into my system, I awoke to not feeling sick and not having suffered the runs. I had a hearty appetite that was quelled with cornflakes followed by bacon and plum tomatoes on toast and a pint of coffee. I was given my Antibiotic shots , had lunch, listened to the football, read the paper, still didn't feel sick, stopped taking the loperamide................. Boring old well was I today, and apart from the fact my truelove sat with me all afternoon which was lovely(shoulders up to ears chuft I was), nothing horrible, nasty ,unusual disastrous happened that I could put on here.
Not eeeeven blood results cus they were late taking em. Mind you the doc did say I might go home next week and I can have more visitors tomorrow!
That's all that happened ..............soz :-)

Friday The 13th.

Yes I know, it seems that Mike's treatment has hit every cliche in the book and it just so happens that day +13 has fallen on a Friday. Mike woke this morning with several completely bald spots and a bed full of hair.

As you can see it's not pretty nor is Mike's hair!

Mike asked yesterday if he could use the hospital's hair clippers, but no-one seemed to know where the were so I dutifully took in the ones from home.

Note the delicate patches of bare skin.

The thing that has really chuffed him is that he won't have to waste time shaving his legs for Tina Turner for a while as they too are nearly hairless.

I think you can see 3 maybe 4 hairs.

Any way I used the clippers and then Mike went off to shower and shave.

Chest hairs hanging on at present.

As you can all see Mike is feeling much better than earlier in the week.

So where are Mike's numbers I hear you cry:

WBC: 1.7
Neutrophils: 1.5
Platelets: 17



The only thing about Mike that's GREEN is his jim jams.

There was one strange thing that happened today. As I was leaving the hospital I spotted a couple of birds sitting on the road. What is so strange? Well the size of them for starters and their determination not to move even when approached by cars and people.



I'm just wondering where the other five got to and why they are almost a week late!

More snow

At 7:15 this morning it started to snow. By 8:30 the road outside my house looked like this:

The builder who is doing my bathroom usually turns up around 8:15 but as this is England it seems that the small amount of snow has delayed him. Toni is keeping a look out for me, but I'm not holding my breath.



Epiphany

As you all knew at the start  (well you could have all sat there and worked it out), Mike's day +12 has turned out to be the festival of Epiphany, day twelve of the Twelve Days of Christmas. Traditionally it is said to be the day that the three Kings presented their gifts to the baby Jesus. So what present did Mike receive? His hair falling out! There is still plenty clinging bravely on, but with every move a couple more fall softly onto the bed.

Mike also had a bit of a surprise when he discovered that Sharon, a member of the MM under 50 club is in the women's bay next door. Sharon had an auto transplant last February and at the age of 40 had hoped for "at least 10 years." Unfortunately she had some pain at the start of December and they found a plasmacytoma on her sacrum which she had biopsied. On Tuesday she decided she could take the pain no longer and so at her appointment yesterday they decided she should be admitted to start on the dreaded dex and radiotherapy. Mike tried to visit but the sister said male patients are not allowed in female bays even though he WAS wearing his slippers..... get her!

Yesterday's counts were as follows:
WBC: 0.5
Neutrophils: 0.4
Platelets: 29

Today's are:
WBC: 0.9
Neutrophils: 0.6
Platelets: 21

PS. I forgot to mention that Mike has folliculitis!

It's all so quiet.

Well I'm sitting here all alone contemplating life, the universe and everything. I've come to several conclusions but I'm not sure that most of you would want to hear them.

Life is so fluid. I'd sort of noticed before but the last fortnight has been like watching the sea come in and out. The first week we were relieved by the care Mike received and privately celebrated how safe we felt. The second week and we have wondered how different things might have been if we lived further North or further South. Or I guess if we had known more and asked for that second opinion elsewhere. In essence the second week has landed us with a doctor who for some reason cannot abide Mike. I haven't imagined it all. I heard what was said by the consultant and I then saw how she deliberately disregarded his decision.

What would Mike's state of health be if he had been given his SCT in Liverpool, or London, or Nottingham, if he'd had a room to himself, had a team of doctors who only wanted the best  and will the questions continue as we find out the results of the last year's treatment?

I have come to one very important conclusion. I'm proud of the blog Mike and I have written. It hasn't always been pretty, but it has told it how it is sometimes. For patients and carers there are rough times on the journey and if we don't accept that, we can't move forward to pastures new, where we can sit quietly and hopefully not hear the ticking.

Ground breaking news.

Today's headlines on Day +11...........

Doctor says not possible to have a syringe driver via Hickman line despite what consultant said.

Mike has a nasty bug living on his line, it is to be removed this afternoon.

Mike's platelets down to 17.

Mike zonked out on antisickness.

Mike has PICC line inserted.

Now isn't that the sort of thing we all like waking up to? No? Well as they say, Good News is No News.

If you are as old as Mike and me you'll remember going your 11+. It was the exam you took in the last year of junior school which decided your fate for secondary school. Pass and you were off to The Grammar School, fail and it was The Comp for you. There is an air of that exam permanently around us at the moment. Will Mike pass or fail his SCT? Will I pass or fail as a carer?

Day +10 and it's more poo and puke.

That's about it folks. Green poo and green puke. Oh and there is some sort of infection in Mike's blood that comes from him. Nothing seems to work so now it's a syringe pump for the antisickness. Mike isn't eating and whatever he drinks just comes back. He feels terrible and there seems to be no end in sight.

To top it all I now don't even have a toilet at home so I've got to stay in a hotel. I don't even have my own pillows to sob into or a dog to comfort me.

Nine lives?

Day +9. I wonder if like a cat SCT patients need nine lives? It certain feels that way considering how many times they seem to go to the brink of death only to return (hopefully!) It doesn't feel like there is much to report. Mike is obviously still alive and seems a bit brighter than yesterday. The doctor said something showed up on the right side of Mike's chest on the x-ray, but of course the antibiotics will deal with it. The runs continue to be a problem, not helped by Mike's usual reaction to antibiotics. We are desperately trying to find a balance with all the drugs, some cause diarrhea which obviously need changing to try and reduce the chances of it happening.  He's not eating properly which I know is a common problem too. Over the last hour he has managed to eat a 150g tub of rice pudding, normal time would be 60 seconds.

Mike's hair has yet to abandon him. I wonder which will go first?

Me time

I had a bit of a wobble at the hospital yesterday. I was around about the time they came to give Mike his platelets and I reckoned as they were waking him, it would be a good time for Mike to take the tablets they had brought in a couple of hours before (yes I had tried to get him to take them but he was just too sleepy.) I made sure he'd got fresh water and handed him the cup, only for him to pull a face and say "I need fresh water to take them not that horrible muck." Hey, it had been a long afternoon and I burst into tears OK?


Well a couple of the staff took me to one side and made me a cuppa. They started to tell me that I needed "Me time" or I wouldn't cope and I realised I don't really get "Me time" anymore. I get up and do stuff for everyone in the house including Mike. I then go and get Mike's shopping, there is always something he needs. Then at 11:30 am off on the bus, train, train and short walk to see Mike. Sit with Mike. Then walk, train, train and bus/taxi home. Arrive 9:30 pm. Have some food. Go to bed. It's been a long 10 days.

Mike mentioned once that his holiday in May would be good practise for this one and he was right, sort of. I'm not 20 minutes walk away from the hotel, it's not Summer and I just haven't the time to fit in all the other stuff I have to do.

Day +8 Part 2

I arrived to find that Mike had gone for a chest x-ray as his temperature had spiked. They have obviously taken bloods, urine sample etc. to check where/if there is an infection. I know absolutely nothing about this stage although I have read other peoples accounts and I seem to remember it being mentioned. Still it causes a fair old panic when you're new to it all.


They have put him on a couple of antibiotics. The nurse actually said changed, but he wasn't on any yesterday, there again he didn't get much help during the day at all yesterday.

I spoke too soon it seems about the ice lollies, in fact I think I may have jumped to too many conclusions about how Mike would be feeling at this stage. His mouth is now sore and his throat is sorer than that. The mucositis seems to be working it's way North. He has been given a new mouth wash called Difflam which is supposed the numb the mouth slightly.


At 3 pm his temperature was 37.4 and he started with the shakes and kept complaining he was cold. By 3:30 pm it was up to 38.2 and he is obviously very poorly. The nurse has given him his caspofungin and said they have ordered some platelets as Mike's own are a measly 22. The antisickness he was given at 3:30 knocked him out and he's been asleep for most of the last couple of hours.

The consultant reckons Mike will be feeling ill for another week to ten days. I'm trying very hard to stay positive, but I'm not cut out for it.

Day +8

Mike has reached rock bottom it seems. Not only is he now off his food, but the endless runs have taken their toll too. I'm grateful to everyone offering moral support. I'm sure you are all right when you say it only lasts a few days, just seems like an eternity to us at the moment. It might not seem so bad if Mike could sleep, but the aforementioned problems combined with the endless disturbances because of the other residents means just as he nods off something or someone wakes him.

This is one of those few times when I wish we had private medical care, if only to get Mike a room to himself.

The Magnificent +7

Imagine the scene, tumble weed blowing across an arid, dusty track. On a chair sits a lone cowboy, his stubble flecked with grey. Strains of "Do not forsake me oh my darling" are carried on the wind. The cowboy starts to sing "I was born under a wandering star....."

Into town rides the magnificent 7. The first to arrive is Neutro Ned wearing nothing at all, a big fat 0.

He is closely followed by Platelet Pete carrying 44 small bullets.

Colonel W. B. Count on his white horse 0.1 had very little to say.

Behind the 3 ringleaders comes Nausea Nick, Fatigue Fred, Diarrhea Dan and Headache Harry.

The cowboy ran his fingers through his hair and looked them all in the eye.