Day 18 - early

Woke up at 5 this morning. Bit excited. Found myself planting some spare tomato's in the border before 6. Must remember to take it easy...
Great to arrive home last night, although it was a bit of a last minute deal with the doctors. Spent the first hour at home being sick, so that was nice for everybody. Pretty exhausted last night , but it was really nice to feel the sun and the breeze.
DL - the pedals are fixed. What I didn't tell you was that I also bought one. A Mercian Strada Speciale. So I can hang that up next to Jeanette's when it goes rusty (www.merciancycles.co.uk)
Look forward to the Pimms, Helen.
I'm not out of the woods yet folks. I still have no immunity. So I need to gradually expose myself.. no I need to gradually become exposed to the myriad of infections out there. I'm down to about 14 stones/88Kg/196lbs, most of which is muscle wastage rather than fat loss, exercise is required, which I hope to build up gradually. I had thought of doing the London to Cambridge bike ride at the end of July, but I'm not sure if I have enough time to prepare.
Off to the Hospital now.

More Day 17

I'm off home. Overnight leave, back in tomorrow for a check up and I should be done.

Day 17

OK I have had my blood results. Neutrophils = 1.14. In theory this means I can go home. Doctors are pontificating at the moment as last night I had a turbo boost with an injection of GCSF. Kind of a ....well, a turbo boost for my cells. So they are concerned that the count may go down again. So we are waiting to see what happens. I'll let you know.

16

Late again. Not that I've been busy. I was playing cards with Alice, who dropped in to see me. That's my excuse. I'm sticking to it.

Blood results are the same as yesterday which is encouraging. They still expect me to be out sometime over the weekend.

Not much to report, just a dull waiting day.

15

Bonza!,
I've been waiting for my blood results to come back before posting this. Good job I did as I have neutrophil news. They are 0.1 WBC = 0.3. This may sound piffling to most of you, if not all of you out there, but for me and my closest this is a major advance on 0.01. I need to be at 0.5 and they let me out of here, maybe by the end of the week end. Lets hope it continues at a pace.
I kind of knew as I have been feeling generally better in the last couple of days.
I think I'll celebrate with a Pepsi.
I also just bought Jeanette a bicycle today on eBay. A rather nice 'lady's' Mercian, and it should arrive in the next few days. It can be ridden by any woman not just Ladys. i.e. not only wives of knights of the realm or those recognised by her majesty. Some of you know I have a small obsession for this make of cycle. They are all handmade. Rolls Royce of a cycle.
Later

14

No change really. Blood results much the same; platelets up due to a bag of them yesterday afternoon. But really no change yet. Sickness under control, but I still suffer from queasy spells. Must be in my head.
Been amusing myself this morning by thinking about a holiday. Since we met Jeanette has never believed that you can read a newspaper at midnight in the summer in the north of Scotland. I know you can, because I have, many years ago when I cycled from Fort William all the way up the West coast to Ullapool and then across to Lewis and all the way back down, through Skye (quickly - as there are McDonald's there. The clan, not the burger outlet) and onto the main land. I think I had trench foot as they were constantly wet. I found drinking whisky and washing with coal tar soap kept the 'midge' away from my tent. Or perhaps it's because I wore the same clothes for a week and cycled over 500 miles - about 80 miles a day.
Anyway as I'm not allowed to fly for a few months after this, we thought we would drive up and spend some time north of Ullapool. We hope to see some people on our way up or down. If any one can recommend a cottage or hotels to stay in en route I'd be happy to hear any suggestions.
Back to my Wester Ross surfing.

13

I'm hoping that 13 is a good number for us today, in that grafting will begin. No sign yet from the bloods today. Neutos still at 0. Doctor today said it was early days yet and wait for the end of the week. Jeanette was born on the 13th, we got engaged on Friday the 13th, we moved house on Friday 13th and, as you know, we live at No.13. So No.13 doesn't frighten us.
I can't believe my daughters are 18 and I've never had them eat snails before. what a huge lapse in my responsibility as a parent. I urge you all to take your kids out at once and serve them up with a dish of snails. Delicious.
I see a marketing opportunity for Pimms in the US. It's got to be better than iced tea surely? Anyone want to go into business?
As far as medical stuff goes, as I said my neutrophils are zero, platelets are 7 (183 when I came in) so I'll be getting a bag of those later. Haemoglobin (Hb) is 11.4 - but I had 2 units yesterday. White blood cells (WBC) =0.
DL, you really know how to frighten a man. For a moment there I thought he knew where I lived. The hamster was the best so far.

Day 12

Late again, but judging by the look of the weather outside you're going to be too busy drinking Pimms and lighting Barbeque's to notice. My time will come I'm sure.
A bit like Mr Button today who romped away with the Monaco. Another reason it's late.
Quite a busy day today. 2 units of blood, 1 still running through. Saline drip overnight and this morning, so I've ben a bit tied. But at least the blood should give me boost.
Thanks for all your posts and mails.
Tomorrow

Day 11

A bit late on posting this today. Sorry. Last night I was moved again to a room with a view of the wheat fields. Amazing how the rows in the field of Sugar Beet have closed up and the number of fields that are yellow have reduced. Must mean that the OSR is almost finished flowering.
I had a bag of platelets the day before yesterday and am due some blood as soon as they have matched me up. I'm a bit anaemic. My neutophils are still zero, but any day now I hope.
I have had a bit more sickness today, but it seems to be under control at the moment. Such a pain as I really don't feel like eating as a result, either.
Sorry, that's about it. I'll try and be more inventive tomorrow

10th day post transplant

Good nights sleep last night. I think the worst of the effects of the chemo on zero-1 must be wearing off. Mostly. So it's a rather boring waiting game from here on in.
What I miss most at the moment, is the outside world. Here I mean 'things wot grow'. I'm constantly asking my family for details of such and such a plant, and what is it doing. A colleague sent a brief rundown of how our fields are at the moment. It was excellent; I was able to imagine my way round for at least half an hour. I've been glued to the RHS Chelsea flower show. I suppose I've spent my working life involved with the 'outside' so it must be second nature. Even though I seem to spend 80% of my time behind a desk these days, there's no substitute for pulling on your wellies.
No other news I'm afraid, although I believe the Cambridge beer festival is on at the moment.

Day nine

Interesting day yesterday. I'm glad I commented on the wheat as I can no longer see it. Don't panic, blindness isn't a side effect, they just moved me to another room on the other side of the building. So now I have a view over the city and in the distance, presumably over Grunty Fen, I can see Ely Cathedral, If the light's in the right direction. Nice to have a change of view.
I was taken for a chest X-ray this morning. Don't know why.
Yesterday I had a really good day. I think it must be pay-off day today as I'm not so good. Slight headache, sickness has returned, and I'm very tired.
Thank you all for your kind comments, and Lynda for keeping the household running and for the latest news of our wildlife and plants etc.

Day 8

The day dawns and I feel so much better - with provisions of course-. Sickness seems to be under control, but if it's not one end it has to be the other. No details will be provided. A gentleman must have some secrets. At least I can eat. I would recommend the 'C10' diet, I've managed to drop 8 kg since I arrived (that's about 18 Lbs for our imperial cousins over the pond). This is probably the lightest I've been for about 20 years, which just shows how fat we get without really thinking about it.
There's a wee man in my toilet today. Just to confirm it's a workman fitting some new grab handles.
I've managed some lunch today - Shepherd's pie, and it's stayed down... so far.
A nice day over the Gogs, the wind seems to have dropped today judging by the trees. The Wheat isn't in ear yet, but it's couple of weeks early yet, I may just see it before I go.
Right, off to my Stats package to construct some data for you.....

Day 7

Sorry stuck with me again as Charles is feeling poorly again today. His temperature is up (38)which is worrying although the medical staff all seem very relaxed about it and have said people often get temperatures and they wont increase treatment unless it stays at 38 or if it spikes to 38.5. He's actually been running a low grade fever for the last few days but this has gradually increased throughout the day.

His main problem seems to be the nausea, which they are struggling to get under control. He is on 5 different anti sickness drugs but still not getting it under control. He has been referred to the palliative care team in the hope they may come up with a different / better combination.

His blood counts remain very low although he doesn't need another transfusion yet but they check them regularly. He has his drip back up so they are keeping his fluids up and also giving him potassium through the infusion as his potassium levels are low.

He is currently sleeping so thought I would catch you all up. I guess he may add his own blog later but for the now thanks again for all your messages.

Love Jeanette x

Day 6

Day 6 is up and running. Better today with less sickness, although the dawn chorus was accompanied by the sound of retching. Strange, it passes me by and I carry on afterwards as though it was quite normal. Perhaps it is, although I thought I came from family of 'sensititive sickers'.
I had meant to listen to the end of the 'Test' but I fell asleep and I missed it, I'm sure there will be opportunities later in the season.
My bloods came back earlier and I'm officially neutropenic (zero neutrophils), so from here on in it's a waiting game for my transplant to graft and my counts to comeback up, usually about days 10 to 14. I will be keeping a graphical record of these and probably publish them here if anyone is interested.
Busy day today with lots of visits, both personal and official, which passes the time, but is exhausting.
Later..

Sunday?

Well, well, well..Three holes in the ground, as my mother used to say. Here I am again, a bit lighter, which won't do me any harm. I think Jeanette has covered it all in previous blogs, I'm not going into the sordid detail and I hope to be out of this in a day or so. But the overwhelming feeling of nausea and exhaustion is makeing me sick and tired. Keep strong for me, Gerry I'll explain later about the Tipple, Phil I see you'll now be working for TAG, or perhaps Phil you could explain to Gerry?

Zero + 4

Me again.
He's feeling a little bit better and although still nauseous has stopped being sick. As expected his blood counts are dropping rapidly and his hb is low so they have cross matched him for a blood transfusion, which he should get later today or tomorrow morning. Hopefully it will make him feel better. (Thanks to all you blood donors out there!)
He is really tired and is currently having an afternoon nap so I'm updating this page whilst I'm sitting here with him. Anyway he may feel up to posting himself later but I know everyone wants to know how things are going so thought I would do it for now.
Sam is on his way back from Plymouth; it will be good to see him and I know he's keen to see his Dad. The girls have been in this week but are busy revising at home today.
Will let you know how things go.
Jeanette x

Zero plus 3

Hi Guys,
I'm just posting a quick update as Charles is still not feeling great. He's had another rough day - side effect of the chemo on Monday unfortunately. Anyway apart from sickness and feeling rotten he is OK - no temperature or sore mouth which is good. They continue to do 4 hourly observations and he has a drip up again to keep his fluids up. His blood counts are dropping but still OK and he's not neutropenic yet.
Hopefully Charles will be back tomorrow - being funny etc. but in the mean time thank you all for comments & good wishes, it makes a difference.
Jeanette x
PS thanks Sam, Heidi & Lara for your fantastic pictures and letters, I've put them up on Charles wall in his room

Zero plus 2

Not a good day today. Sickness abounds. You don't want the details, so I'll try and do more tomorrow.
C

Zero +1

Things going well here at the moment, feeling OK but a little tired. J and I took a tour round the perimeter of Addenbrooke's, probably about a mile or more, which is good for me as I won't be allowed out of my ward come the weekend as the little white cells will be decreasing by then and the risk of infection rises. Had a good night's sleep and a slumber just now for an hour or so.

DL of ugly follower picture is on his way in to pay me a visit. We always manage to laugh a lot together, which will do us both good..... DL only just left, hence the later posting than usual.

Raining outside which will do the crops good as we've been lacking a bit of moisture.
Can't think of anything amusing right now. Maybe later.

More Zero

I have had my little cells back this afternoon with no ill effects, although J says I smell of tinned Sweetcorn and Garlic. I could taste tinned sweetcorn for about 10 minutes but since then (3 hours ago) I am oblivious. J has an averson to this smell as she was sick on it as a child. Amazing how these things stick with you.
Didn't sleep much last night. I was sharing with another and between us we managed to wake each other up alternately almost every hour. He then woke up at 6 put on his radio and then snored for the next 2 hours. Ah well. I though that several years at boarding school would have prepared me for sharing with others. But I guess 40 years have passed since then, although I seem to manage the hospital food OK at the moment. It's better than the school food if I remember correctly.
Happy Birthday Josh.
C

Day Zero

47% of the 21 votes were to cut my hair short. Hard cheese. That was my manifesto; but it's my democracy.
Just moved to a room (No 9 - Pink) with a nice view of the fields, the road to Haverhill over the Gogs (the only hill in Cambridge - of which they are very proud). It's a popular dog walking area and is closed at night as I believe it became popular for another type of dog related pastime. I did pen a short poem.

Gog Magog,
Shite of dog.

I thought it was rather good.
More later

Zero minus One

Here I be.
I'm lounging on a bed at the moment. I've had my Chemo. Sucked lots of ice throughout to help prevent mouth ulcers later on. I've had lots of fluids and just to make sure I was going often enough they gave me diuretics as well. So I have applied to the 2012 olympic management to join the pissing team. Going for gold.
Feeling good at the moment so no concerns.
Thanks for your votes on the hair front. I won't be taking any notice of the results, but thanks anyway. Fallout seems to have slowed to a light early autumn leaf drop. I may wait until todays dose takes full effect.
Thanks for all your comments and support. They really help.
Catch you all later. C

BedTime

I've had news that they have a bed for me tomorrow morning bright and early, which is great.
Yesterday we managed to go and see the new Star Trek film. One advantage of not getting a bed earlier in the week. Cinema's are a restricted zone for a few months after the transplant, so it was my last chance to go. It is a good film, even for someone who can remember the original series. I'd recommend it.
So I'd better finish cutting the grass and get my packing done. Not sure when I'll next get a chance to post this out, I'm going to have to figure out the hospital web access etc. Tomorrow I'll probably get a big dose of chemotherapy (melphalan) and large volumes of fluids to protect my kidneys. One of the side effects is nausea (I'm not surprised) but they have really good anti sickness stuff these days. I'll get back to you all as soon as I can.
Cheers. C

Hair today....

Does any one know the average number of hairs there are on a human head?. I'm trying to work out how long it will be before it's all gone. Not long at the current rate.
To cut it short or to leave it? Votes please.
I managed to get a headlamp unit from a scrap merchant near 'Grunty Fen'. Sounds like something Rob may use an alias.
C

News?

Been rushing round today trying to sort out the MOT on our car which we just realised runs out tomorrow. Of course it needs tyres, a front number plate and a new headlamp cluster. Can't really complain as we don't spend a fortune on it and it owe's us nothing. I'ts just a hassle.
I found out this afternoon that there should be a bed for me on Monday and I need to ring on Sunday to confirm it. I'll let you know. It's good to know something, as waiting round yesterday for the phone to ring was really stressful. I'm trying to stay in a happy place as much as I can, which must be better for recovery. I'm still giggling at Helen's joke 3 days after she told me.
I think I can post it here, although some, I know, will question the political correctness.

Paddy: These steroids I've been taking have turned my knob purple

Mick: Anabolic?

Paddy: No, just my knob

Make me laugh if you can.

No News

No news on a bed yet.

A Day at Home

Well almost. No bed today, so I'm waiting.
I the meantime I went in and got the dressing changed on my Hickman line. Some of you have asked what it is. Its an intravenous catheter which goes into a vein near my collar bone emerges somewhere north west my left nipple. It branches into two and the ends dangle about near my mid abdomen, so about 1 foot or 30 cm long. Wikipedia can scare you more if you want. The purpose of them is so they can give me all my medication and chemotherapy quickly and easily and also to take blood samples if they need them, and they probably will. They're very keen on blood samples. I suppose it is haematology after all. Any way this line will, as Liz the nurse said today, be my best friend for the next few months.
So I get at least one more night in my own bed which will be really nice.
I'll let you know.

Hickman day

My Hickman line was put in today, quite an easy procedure from my point of view, although I did warn them that finding a vein in the back of my hand wasn't going to be easy. "It won't be a problem", said the doctor, who then proceeded to dig about with a needle for 10 minutes or so, which has left me with a swollen hand and some nice bruising. Oh well, the line is in now and will be my friend for the next couple of months, and it will save me further bruising and puncture wounds.
J and I managed to get a few courgette (zucchini) seeds in the ground this afternoon which is great. As usual we'll have too many and have to be creative with method of preparation. Someone gave me a recipe last year. Take 5 or 6 medium size courgettes, grate them into a bowl and then put them on the compost heap. It seems to work quite well.
I was expecting to be admitted tomorrow and begin treatment with my melphalan infusion, but I just found out that they don't have a bed for me. I hope to find out by midday if I can go in tomorrow evening.
I'll keep you posted

Date for day 0

Today I found out the date for my admission for the transplant. I am due to go in next Wednesday, which is day 0 minus 1, and receive the chemo, and then on the Thursday -Day 0- receive the stem cells. All rather exciting really. I had a tour round the ward this morning after clinic, which seemed really nice. Clinic involved the usual blood tests this week but also a chest X-ray and an ECG. No problems reported.
This afternoon when we got back A and I took some of the greenery we cut down at the weekend to the dump which tidied things up a bit. We stopped in at my work on the way back for a cup of tea. Nice to see everyone.
I'm still surprised by how tiring a full day is. I hope to still get my evening walk in half an hour or so, it's brightened up a bit so it should be nice.