Hi all. Well, here we are at the end of September, and what a wonderful month it's been here in Cambridge. I always think it's the best month of the year.
On Monday I went for the first of my 'childhood' immunisations. This one was for Meningitis. No wonder babies of 6 months scream when they get this one. Not the most comfortable of injections. This has no reflection on the nurse who administered it, as her technique was very good, (I know, I've had a few injections recently) but the vaccine was rather thick.
I'm still working 2 days a week. I do enjoy it but I find I am very weary at the end of the day. Everything happens so fast! I think I've got used to a slower pace of life. I hope to move up to 3 days soon as I can't achieve everything I want to in 2
Jeanette and I are planning an Orchard (sounds grand, but only 3 to 4 trees) at the end of the garden and with some help form friends have almost finished clearing the scrub and weeds. The next step is to get the fence fixed. We spent a day on Sunday at a show where there were fruit tree experts and they had lots of old local varieties which were very interesting. We have a tonne of info to work through before we make decisions on what to buy. But November is planting month so we need to get a shift on.
Keep well all of you.
Wednesday 30 September 2009
Friday 11 September 2009
Latest News
I'm not sure if any one is still reading this after so many months. Yesterday I saw my consultant and he has given me the nod as regards remission. My latest bone marrow biopsy shows between 1 and 2% infiltration and 5% would be OK. This means I can go about my life as 'normal'. I can't pretend that I am, so it'll take a few days to sink in properly. I'm not cured but at least we've got it on hold.
It's Jeanette's birthday on Sunday and she says this is the best present she could have had. Without her I wouldn't have got this far, so much of my 'wellness' is down to her strength and care. x
It's Jeanette's birthday on Sunday and she says this is the best present she could have had. Without her I wouldn't have got this far, so much of my 'wellness' is down to her strength and care. x
Friday 7 August 2009
Update
I saw my consultant last night. I'm due for a bone marrow biopsy, probably at the end of the month. This is to check on what is going on following the SCT and to supplement blood test results. I had some blood taken yesterday but I won't know the results for a little while. I also requested that I have a scan of my hip as this is still causing me grief and pain most days, though it is controllable with pain killers.
I hope to be back at work at the beginning of September and have a meeting with my manager next week to discuss my phased return. The thought at the moment is to go back for two or three days a week and build up the hours over the next month or three. In a way I'm looking forward to being back. We'll see.
I hope to be back at work at the beginning of September and have a meeting with my manager next week to discuss my phased return. The thought at the moment is to go back for two or three days a week and build up the hours over the next month or three. In a way I'm looking forward to being back. We'll see.
Thursday 30 July 2009
Sometime later
I just wanted you all to know, if you are still reading this, that I am feeling good at the moment. Just got back from 2 weeks in the far north of Scotland. There can't be many places left in the country that are as beautiful or as quiet. Here we can hear the constant drone of vehicles and aeroplanes, but to step out and listen to absolute nothing was a real treat.
My hair is just starting to grow back. My head resembles something like a small duckling. hopefully in a few weeks it will be presentable.
I'll try and post more frequently from now on.
Well done and thanks to Rob and crew for completing the journey from south to north. Next year we'll all tackle Mont Ventoux of Tour de France fame?
C
My hair is just starting to grow back. My head resembles something like a small duckling. hopefully in a few weeks it will be presentable.
I'll try and post more frequently from now on.
Well done and thanks to Rob and crew for completing the journey from south to north. Next year we'll all tackle Mont Ventoux of Tour de France fame?
C
Tuesday 30 June 2009
Day--? Lost count - about week 7 post SCT
Hey folks, Thanks for all the message's you've sent. I've put them all in the comments file from my last posting (day 36).
Life just seems so busy , I don't know how you all find time to go out and work for a living.
Phil, what am I going to do with all these F..ing gherkins that are growing in my greenhouse? Too bitter to eat as cucumbers. Thanks for the book and the post card. Hope it was a good break.
DM - yes good to see you in late August if you are over - I'm due back at work in September.
I saw my consultant last Friday. All well. Neuts. 2.68. Platelets normal. So all good. Paraproteins at 7 - these are what they measure to see if the cancer is still active. (Below 15 or there abouts is regarded as remission in my case) For you guy's they will be zero. They don't expect them to drop down much further for a month or few. Just as long as they don't go up we're all happy.
Strength and stamina are almost returning. At least I feel better. I'm on a course of steroids at the moment to try and tackle my nausea etc. Seems to be working so far.
Advertisement section: My very good friend Rob is tackling an 'end to end' in July. That's Lands End to John O'Groats on a bicycle.(The full length of the UK)
He's doing this with me in mind amongst others. For which I feel most humbled. I wish I could go too.. He's trying to raise some money for Leukaemia research in the UK and KWF Kankerbestrijding which is a Dutch cancer charity, -Rob's based in Amsterdam-.
So dig deep folks. Rob said he'd buy a pint for the first one so sponsor him on this site: http://www.justgiving.com/lejog-leukaemia-research/
Oh.....sorry that'll be my beer
Life just seems so busy , I don't know how you all find time to go out and work for a living.
Phil, what am I going to do with all these F..ing gherkins that are growing in my greenhouse? Too bitter to eat as cucumbers. Thanks for the book and the post card. Hope it was a good break.
DM - yes good to see you in late August if you are over - I'm due back at work in September.
I saw my consultant last Friday. All well. Neuts. 2.68. Platelets normal. So all good. Paraproteins at 7 - these are what they measure to see if the cancer is still active. (Below 15 or there abouts is regarded as remission in my case) For you guy's they will be zero. They don't expect them to drop down much further for a month or few. Just as long as they don't go up we're all happy.
Strength and stamina are almost returning. At least I feel better. I'm on a course of steroids at the moment to try and tackle my nausea etc. Seems to be working so far.
Advertisement section: My very good friend Rob is tackling an 'end to end' in July. That's Lands End to John O'Groats on a bicycle.(The full length of the UK)
He's doing this with me in mind amongst others. For which I feel most humbled. I wish I could go too.. He's trying to raise some money for Leukaemia research in the UK and KWF Kankerbestrijding which is a Dutch cancer charity, -Rob's based in Amsterdam-.
So dig deep folks. Rob said he'd buy a pint for the first one so sponsor him on this site: http://www.justgiving.com/lejog-leukaemia-research/
Oh.....sorry that'll be my beer
Wednesday 17 June 2009
Day 36
I went for a bike ride last night. I must have cycled, well roughly, I think, about a mile. I ended up in almost the lowest gear. Before I set off I had a route planned of about 4 miles of gentle scenic cycling on the flat mostly. I had to turn back not far from home. I cant believe how weak I am. So now I seriously need to start a regular programme. A little further and faster each day.
I guess being in hospital for a few weeks and sitting round on my a**e for the last few months has contributed to a lot of muscle wastage, despite my best efforts to stay (I thought) fit.
Message to all you Myeloma people out there. Take as much exercise as you feel able. Little and often. Keep your strength up.
A friend of mine is about to embark on and end to end cycle ride (Land's end to John O'Groats). He's based in Amsterdam so is sponsored for a Dutch cancer charity. I'll put a link to it here when he sends it to me.
R's last A level exam today.
I guess being in hospital for a few weeks and sitting round on my a**e for the last few months has contributed to a lot of muscle wastage, despite my best efforts to stay (I thought) fit.
Message to all you Myeloma people out there. Take as much exercise as you feel able. Little and often. Keep your strength up.
A friend of mine is about to embark on and end to end cycle ride (Land's end to John O'Groats). He's based in Amsterdam so is sponsored for a Dutch cancer charity. I'll put a link to it here when he sends it to me.
R's last A level exam today.
Tuesday 16 June 2009
Day 35 already
I can't believe I'm up to day 35. Time seems to go so fast. I my head I had all these little jobs around the house I was going to have done by now. A dab of paint here and there etc. But so far I've done nothing. I'd better get on.
Had one of the chickens (Margaret) put down the other day. She was rather off colour for a few days and not eating or drinking so it was the kindest thing to do. That just leaves Coco strutting her stuff at the top of the garden. We cant decide to get her some company or to let nature take it's course.
I'm pretty well today, no sickness and I had to shave as there was stubble growing! perhaps my head hair will decide to sprout as well.
Had one of the chickens (Margaret) put down the other day. She was rather off colour for a few days and not eating or drinking so it was the kindest thing to do. That just leaves Coco strutting her stuff at the top of the garden. We cant decide to get her some company or to let nature take it's course.
I'm pretty well today, no sickness and I had to shave as there was stubble growing! perhaps my head hair will decide to sprout as well.
Thursday 11 June 2009
Day 30
Hi all, My posting on this blog is poor at the moment. I think I'm associating it with feeling unwell, which I still do on occasion but generally I feel well. I had a cold last week but that seems to have cleared up quite quickly. They tell me that I will be a bit like a baby, in that I will get lots of colds and sniffles as I work my way through all the various strains of the common cold. Hopefully I'll avoid the more serious stuff like chickenpox, measles, shingles etc. I will get all my immunity jabs at about 6 months post transplant. Of course if all children had these then it wouldn't be a problem.
Thanks to all of you who continue to send me good wishes and goodies through the post and to those of you who drop in and see us. Much appreciated.
I had my Hickman line out on Monday. Not too bad an experience, though they said I rather 'liked' it in that my body was assuming it was part of me. I think this means that it took a lot of tugging to get it out.
We have now booked our Scottish trip, and I can supply more detail if you are really that interested.
I'll try and post more frequently.
C
Thanks to all of you who continue to send me good wishes and goodies through the post and to those of you who drop in and see us. Much appreciated.
I had my Hickman line out on Monday. Not too bad an experience, though they said I rather 'liked' it in that my body was assuming it was part of me. I think this means that it took a lot of tugging to get it out.
We have now booked our Scottish trip, and I can supply more detail if you are really that interested.
I'll try and post more frequently.
C
Saturday 6 June 2009
Day 25
Hello again. I'm so busy at the moment I find it hard to find time to get this done.
Yesterday was clinic day. Sam and I arrived at 10:45 and were seen at 14:30. This is the price we pay. Still, all was reported as good. Neuts up to 1.08 since Tuesday. This means that I can clear out my small home pharmacy, as I only need to take 2 tablets on a regular basis, and one of those is for sickness. My daily anti blood clotting injection also stops. Also good as I'm black and blue after 9 months of it. My next appointment is in 3 weeks. So really we're on our own now.
On Monday I'll be getting my Hickman line removed, which I'm really looking forward to, as I'm not in to extreme body piercing. It's done under local anaesthetic, so we should be in and out pretty quickly.
The ******* chickens got into the veggie patch the other evening. As they have almost stopped laying I was sorely tempted to do the deed and put them out of our misery, but didn't. Grrr. Luckily they didn't do too much damage other than dig up a couple of butter nut squash, which we put back in. Lets hope they survive. The squash that is, not the chickens.
Yesterday was clinic day. Sam and I arrived at 10:45 and were seen at 14:30. This is the price we pay. Still, all was reported as good. Neuts up to 1.08 since Tuesday. This means that I can clear out my small home pharmacy, as I only need to take 2 tablets on a regular basis, and one of those is for sickness. My daily anti blood clotting injection also stops. Also good as I'm black and blue after 9 months of it. My next appointment is in 3 weeks. So really we're on our own now.
On Monday I'll be getting my Hickman line removed, which I'm really looking forward to, as I'm not in to extreme body piercing. It's done under local anaesthetic, so we should be in and out pretty quickly.
The ******* chickens got into the veggie patch the other evening. As they have almost stopped laying I was sorely tempted to do the deed and put them out of our misery, but didn't. Grrr. Luckily they didn't do too much damage other than dig up a couple of butter nut squash, which we put back in. Lets hope they survive. The squash that is, not the chickens.
Thursday 4 June 2009
Day 23
Gerry, Gerry, Thanks for the package. Yes the dots are interesting. For those not in the know, Gerry sent me a huge package of Sweets (Candy) and other stuff, from the US . Still finding more varieties at the bottom of the box. Too kind.
Quiet day today, trying to get all Sam's washing done and one or two other personal objectives. I feel OK but perhaps a little unwell. Too many sweets.
Quiet day today, trying to get all Sam's washing done and one or two other personal objectives. I feel OK but perhaps a little unwell. Too many sweets.
Wednesday 3 June 2009
Day 22
I'm well folks, sorry I've been quiet for a couple of days, when I haven't been so good. Came out of hospital and felt great for a day or two - GCSF and euphoria - then I went downhill, felt sick and very very very tired. Yesterday I went in for blood tests. Neuts- 0.68 WBC 1.3, lower than when I came out but still OK. After that I think I slept for the rest of the day and night and was grumpy in between. To misquote Grauco Marx to a hostess, ' I've had a wonderful day, but this wasn't it'.
My bike arrived yesterday, actually I think it may be a 'Vincitore' which is better than a 'Strada', which I am pleased about, but the paint job, though adequate, has spoilt some of the nicer features. For one the serial number is obscured so I cant find out for sure which model it is, or the age. I may need to get it resprayed.. Perhaps I should ride it first.
Yesterday was my 3 week post transplant anniversary.
So today altogether better, though still very weak and tired. Although I have eaten better today. Take it day by day and compare weeks I was told yesterday. Good advice.
My bike arrived yesterday, actually I think it may be a 'Vincitore' which is better than a 'Strada', which I am pleased about, but the paint job, though adequate, has spoilt some of the nicer features. For one the serial number is obscured so I cant find out for sure which model it is, or the age. I may need to get it resprayed.. Perhaps I should ride it first.
Yesterday was my 3 week post transplant anniversary.
So today altogether better, though still very weak and tired. Although I have eaten better today. Take it day by day and compare weeks I was told yesterday. Good advice.
Saturday 30 May 2009
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.
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.
Friday 29 May 2009
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.
Thursday 28 May 2009
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.
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.
Wednesday 27 May 2009
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
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
Tuesday 26 May 2009
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.
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.
Monday 25 May 2009
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.
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.
Sunday 24 May 2009
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
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
Saturday 23 May 2009
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
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
Friday 22 May 2009
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.
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.
Thursday 21 May 2009
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.
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.
Wednesday 20 May 2009
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.....
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.....
Tuesday 19 May 2009
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
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
Monday 18 May 2009
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..
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 17 May 2009
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?
Saturday 16 May 2009
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
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
Friday 15 May 2009
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
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
Thursday 14 May 2009
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
C
Wednesday 13 May 2009
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.
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.
Tuesday 12 May 2009
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
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
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
Monday 11 May 2009
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
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
Sunday 10 May 2009
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
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
Saturday 9 May 2009
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
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
Friday 8 May 2009
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.
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.
Make me laugh if you can.
Thursday 7 May 2009
Wednesday 6 May 2009
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.
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.
Tuesday 5 May 2009
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
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
Friday 1 May 2009
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.
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.
Tuesday 14 April 2009
Tuesday 14th April
This is my first entry in this blog, or indeed any blog.
I just got back from a morning in hospital having had a dose of chemo. This is the first step of stem cell mobilisation. Really it wasn't so bad. Quite a quiet morning reading my book and drinking tea. So for the next week I'll be having daily injections to help get these guys into my blood stream. For those of you that have had stem cell transplant this will be old news. The Chemo was a big dose so I'm not sure how I'm going to feel later today, but time will tell..
I finished work last week, so I can spend a bit of time getting this blog up to speed.
Apologies from a novice. Charlie
I just got back from a morning in hospital having had a dose of chemo. This is the first step of stem cell mobilisation. Really it wasn't so bad. Quite a quiet morning reading my book and drinking tea. So for the next week I'll be having daily injections to help get these guys into my blood stream. For those of you that have had stem cell transplant this will be old news. The Chemo was a big dose so I'm not sure how I'm going to feel later today, but time will tell..
I finished work last week, so I can spend a bit of time getting this blog up to speed.
Apologies from a novice. Charlie
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