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
Tuesday, 30 June 2009
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
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