Feeling good this morning, ahead of household tasks and so have some time to make a long overdue blog update. I'm already thinking that today is Sunday though so the rest of the week will therefore be a shock, more later...
To kick-off with, a couple of things in the news that I've seen various tweets about and can hold my tongue no longer.
First BP. Indisputably one of the worse environmental disasters instigated by man. Undoubtedly BP have a responsibility and much apologising to do especially after the somewhat blasé remarks when the CEO first went public. A question though, is BP entirely culpable though?
BP were renting the Deepwater Horizon rig so does some responsibility lay with Transocean (the renters) or Hyundai Heavy Industries (who built it). E.g. do these things have a "service life" whereby they are not safe for rental after so many drilling hours, are there regular "check-ups" of the equipment before re-renting?
Who allowed drilling to happen there in the first place? Someone must have authorised it and given the highly risky nature of such an undertaking, what precautionary and insurance measures were stipulated ahead of authorisation?
I heard on the radio (I think) that this is getting so much publicity because it is happening so close to the US. Don't get me wrong, it's a disaster and I feel for the people affected as well as being saddened to the huge environmental impact but if this happened off a 3rd world country coast or mid-ocean, would it be so reported?
Maybe my questions are naive but I think there is more to this than just pointing the finger at one source and surely now more than ever, alternatives to oil dependency must be relentlessly pursued.
David Laws. Hmmm. To start off with I was rather annoyed with the twittersphere for all the anti-Telegraph sentiment for breaking this story as it struck me as somewhat hypocritical (I don't think there would have been as much furore were the individual a Tory or Labour MP).
However, having just seen the BBC News article suggesting that the Telegraph are now pursuing Laws' replacement, I do wonder what the heck that paper is up to. Yes, they are Conservative supporting but wake-up you guys - we are at a new dawn of politics, a real coalition. Please let's give it a chance, we all know (or should know) that we are in for a rough ride - let's get some genuine talent therefore at the helm to steer the best path possible and stop sniping at the government so that they can get on with what needs doing.
So back to David Laws. He was wrong. But he admitted it and did an honourable thing. IMHO though his resignation should have been refused by Cameron and Clegg. Based on his stupendous education and background, I think Laws is the sort of person we need at this time of economic crisis. As such, as painful as it probably is for him (he is a very private person AIUI and this is what lead to the whole fiasco) he (and Cameron/Clegg) should do what's best for the country and get him re-involved, maybe not as a central "mouth-piece" figure, but certainly central to getting this country back on the right economic footing.
As a regular Tory voter (no, I'm not sorry) in the spirit of coalition I find myself siding with those on Twitter who are supporting David Laws.
Okay - enough of that but one more serious thing: I'm still in remission! I got the results from my 9 month biopsy back when I went to Oxford the other day. Blood counts are generally good and the BCR-ABL level was 0%, excellent news! My anniversary biopsy is scheduled in for 12th July, so fingers crossed for that too.
Physically I'm seem to be doing well, I'm putting on the weight again (need to convert more to muscle though!), full head of hair and starting to look normal again. Problems seem to be dry skin and bloody painful feet. Makes it an issue walking big distances but I've been given the all-clear for swimming so am looking forward to not just watching my sons at the local pool but literally diving in and enjoying the fun!
Finally chores...
Tomorrow will see me become a fully fledged house-husband. Sarah re-starts full-time 9-5 June 1st (congratulations again my love!) which means that I will take over the duties of cleaning, laundry, cooking, cleaning (there's a lot of it hence the double mention!) and school-runs/looking after Jake & Luke in the evenings. Oh yeah and looking for a job at the same time!
If anyone has any tips to stop me from going nuts, it would be greatly appreciated!! Having got a stack of ironing out of the way this morning, I can safely say that it is essential to fold clothes after taking them off the line/out of the tumble dryer as it massively reduces the effort. Also, the best ironing music by far has to be "You Can't Stop The Beat" from Hairspray, a surprisingly entertaining movie with a stellar performance by John Travolta. Boy can that man dance!
Enjoy.
Showing posts with label General progress. Show all posts
Showing posts with label General progress. Show all posts
Monday, 31 May 2010
Thursday, 28 January 2010
Day +198: First blog of the year...
OK - so not the 1st of January and no "Happy New Year" except for that one of course ;-) but just making it by the skin of my teeth to provide an update in the first month of the new decade...
Can't believe my last (progress) update was October '09 but as you may recall from that, things were looking good and I was starting to live a "normal" life. However, late November & early December I took a turn for the worse and was laid low with my temperature spiking all over the place and I was getting worried that I'd have to be re-admitted again. It was very stressful as clearly I didn't want to spend Christmas in hospital.
Fortunately that passed - it could have been a combination of GvHD or the re-balance of medication we were trying but Christmas was at home with the family and was fantastic although tough. I managed to prepare much of the traditional lunch for Sarah, the boys and Sarah's parents.
We had friends come round to see in the New Year which was a real boost and on New Year's day we went to Sarah's parents and spent a few nights there; that seemed to "flick a switch" in me that revived me in so many ways and things have been going great guns since.
Consequently blogging has taken a back seat but at least Twitter let's me send quick updates...
Anyhow, looking back at my last progress blog coincidentally that was the time of my first biopsy post transplant, the 3 month baseline marker. Tomorrow (Mon 1st Feb) is my 6 month biopsy. I'm apprehensive because of the procedure/sedation etc.
I should remain positive though, I saw the consultant last Wednesday - he's very happy with progress (as am I to be honest):
Blood counts etc. also mean that I'm able to eat out more often and generally "be ordinary" - it's great!
However, if I'm truthful, with such good results from the last biopsy I'm a little scared that they won't be as good this time. I'm also due to have my Hickman line taken out (after nearly a year of having it in, how scary is that??) so with that, the number of colds going around and the side effects I seemed to have from last time, I'm nervous and know that this coming week is going to be tricky, so bear with me!
Can't believe my last (progress) update was October '09 but as you may recall from that, things were looking good and I was starting to live a "normal" life. However, late November & early December I took a turn for the worse and was laid low with my temperature spiking all over the place and I was getting worried that I'd have to be re-admitted again. It was very stressful as clearly I didn't want to spend Christmas in hospital.
Fortunately that passed - it could have been a combination of GvHD or the re-balance of medication we were trying but Christmas was at home with the family and was fantastic although tough. I managed to prepare much of the traditional lunch for Sarah, the boys and Sarah's parents.
We had friends come round to see in the New Year which was a real boost and on New Year's day we went to Sarah's parents and spent a few nights there; that seemed to "flick a switch" in me that revived me in so many ways and things have been going great guns since.
Consequently blogging has taken a back seat but at least Twitter let's me send quick updates...
Anyhow, looking back at my last progress blog coincidentally that was the time of my first biopsy post transplant, the 3 month baseline marker. Tomorrow (Mon 1st Feb) is my 6 month biopsy. I'm apprehensive because of the procedure/sedation etc.
I should remain positive though, I saw the consultant last Wednesday - he's very happy with progress (as am I to be honest):
- I'm finally starting to put on weight (rather than just maintaining a level)
- Some muscle is coming back (I'm doing more stairs and slightly heavier lifting at home)
- Still getting tired, but this is more to do with trying to get my sleep pattern back in order plus I'm doing loads more around the house now
- Skin, Hair, Nails - all seem to be growing more normally now
- Been to the office a few times to catch up with folks, fix a few remote access problems and discuss with HR & my manager about returning to work...
Blood counts etc. also mean that I'm able to eat out more often and generally "be ordinary" - it's great!
However, if I'm truthful, with such good results from the last biopsy I'm a little scared that they won't be as good this time. I'm also due to have my Hickman line taken out (after nearly a year of having it in, how scary is that??) so with that, the number of colds going around and the side effects I seemed to have from last time, I'm nervous and know that this coming week is going to be tricky, so bear with me!
Thursday, 5 November 2009
Day +111: Goodbye October, hello new life...
Well it's been a while again since I've blogged a decent update but at least I've been tweeting!
October was a mixed month in that the first 4weeks (long month) were great - being home helping out etc. but the back end was a nightmare.
Fundamentally that was the reason for "going dark" both in terms of keeping in touch but also mood and general well being. Basically I spiked a temperature and that meant I had to go back in to hospital on to the ward, I think it may have been triggered from the hip biopsy I had on the 16th October.
Frankly it was depressing after being back at home but the temperature came down quickly thanks to strong antibiotics and I was able to negotiate going home after just one night's observation so at least I was home Sunday evening.
However, the antibiotics combined with suspected mild GvHD meant lots of diarrhoea. This lasted probably a week and a half in total and as you can imagine was incredibly debilitating, humiliating, tiring and depressing to be blunt.
The depression was quite bad and really it was the patience of Sarah, kind words from my Dad plus various messages and calls from people that came in out of the blue and generally thinking about all the folks that have been routing for me that saw me through.
On the plus side, I learned though through talking to the hospital staff that:
Hopefully this information is of use to others then to help them when they're feeling blue, even if you are generally healthy - tiredness is a problem:
Obviously this still needs to be monitored, biopsies will be conducted every 3 months, I am still on a lot of meds etc. but this is clearly amazing news and hopefully gives comfort to others that all of the above can work if you keep the faith, follow the professionals' advice, take your meds etc. and generally try and get on with things as normally as possible (i.e. being positive).
So I just wanted to let you know, thank-you all and obviously ask you to still keep me in your thoughts(!) so that this may continue and I can start real recuperation now.
I probably won't be be blogging anything significant from here on in, as to be honest I find that doing stuff around the home, helping Sarah with copious admin, staying on top of work/personal e-mails and of course helping with the boys is starting to turn full time again and quite tiring!!
I will be tweeting the usual mundane stuff about hospital visits etc. :-) but will include general updates on status etc. as part of that. Plus geek boy that I am will likely start turning some attention to interesting (well to me anyway) technology & gadgets...
Any please stay tuned if you can, thank-you again, love and peace to you, your families and all.
Chris.
October was a mixed month in that the first 4weeks (long month) were great - being home helping out etc. but the back end was a nightmare.
Fundamentally that was the reason for "going dark" both in terms of keeping in touch but also mood and general well being. Basically I spiked a temperature and that meant I had to go back in to hospital on to the ward, I think it may have been triggered from the hip biopsy I had on the 16th October.
Frankly it was depressing after being back at home but the temperature came down quickly thanks to strong antibiotics and I was able to negotiate going home after just one night's observation so at least I was home Sunday evening.
However, the antibiotics combined with suspected mild GvHD meant lots of diarrhoea. This lasted probably a week and a half in total and as you can imagine was incredibly debilitating, humiliating, tiring and depressing to be blunt.
The depression was quite bad and really it was the patience of Sarah, kind words from my Dad plus various messages and calls from people that came in out of the blue and generally thinking about all the folks that have been routing for me that saw me through.
THANK-YOU ALL!
On the plus side, I learned though through talking to the hospital staff that:
- TBI causes extreme lethargy that can come back and haunt you
- Fatigue affects coping mechanisms you may have developed
- Steroids cause mood swings
Hopefully this information is of use to others then to help them when they're feeling blue, even if you are generally healthy - tiredness is a problem:
- Take time out & relax
- Find time for yourself, re-focus and start again
- Talk to people, be open & honest and rely on the support of friends & family you trust
- The world will go on either without you for a day or two or with you working at a reduced pace
- Visual under the microscope, crude but showed things looked quite good
- FISH test, a genetic test that was looking for the Philadelphia +ve gene that added complications to my leukaemia. The result from that indicated that things look good
- Molecular test - this is the most in depth test and showed 0% leukaemia cells
Obviously this still needs to be monitored, biopsies will be conducted every 3 months, I am still on a lot of meds etc. but this is clearly amazing news and hopefully gives comfort to others that all of the above can work if you keep the faith, follow the professionals' advice, take your meds etc. and generally try and get on with things as normally as possible (i.e. being positive).
So I just wanted to let you know, thank-you all and obviously ask you to still keep me in your thoughts(!) so that this may continue and I can start real recuperation now.
I probably won't be be blogging anything significant from here on in, as to be honest I find that doing stuff around the home, helping Sarah with copious admin, staying on top of work/personal e-mails and of course helping with the boys is starting to turn full time again and quite tiring!!
I will be tweeting the usual mundane stuff about hospital visits etc. :-) but will include general updates on status etc. as part of that. Plus geek boy that I am will likely start turning some attention to interesting (well to me anyway) technology & gadgets...
Any please stay tuned if you can, thank-you again, love and peace to you, your families and all.
Chris.
Tuesday, 14 July 2009
Get ready the French...
Quick update on Bastille Day seems appropriate given that one half of the stem cell infusion I'll get on Friday is from the remaining French bag.
Today is Day -3, I've had 2 TBI sessions (Total Body Irradiation) - seems OK so far other than being quite tired directly afterwards. I've also started Ciclosporin and MMF (Mycophenolate Mofetil) both immunosuppressants to help the cell infusion take when I have it on Friday (basically I need for the cord stem cells to come in and see me as the enemy and start killing off my white blood cell capability and for them to take over so that the leuakeamia is cured.
TBI and the two drugs haven't caused too much in the way of side-effects at the moment but that is very likely to change next week, hence I'm burning up my BT Openzone credits here at the hospital while I'm still in the mood to be online and blog and stuff.
Oh - and the move to the Churchill went very smoothly, 
the new room is very nice but as might be expected there are teething problems, most noticeably for me is the mornings as my TBI is meant to be at 08:30 but so far I have been an hour late for both.
Pictures: old empty blue room of Ward 5e versus new empty neutral room of Churchill, there was no bed or furniture when I arrived but that's taken care of now :-)
Today is Day -3, I've had 2 TBI sessions (Total Body Irradiation) - seems OK so far other than being quite tired directly afterwards. I've also started Ciclosporin and MMF (Mycophenolate Mofetil) both immunosuppressants to help the cell infusion take when I have it on Friday (basically I need for the cord stem cells to come in and see me as the enemy and start killing off my white blood cell capability and for them to take over so that the leuakeamia is cured.
TBI and the two drugs haven't caused too much in the way of side-effects at the moment but that is very likely to change next week, hence I'm burning up my BT Openzone credits here at the hospital while I'm still in the mood to be online and blog and stuff.
Oh - and the move to the Churchill went very smoothly, 
the new room is very nice but as might be expected there are teething problems, most noticeably for me is the mornings as my TBI is meant to be at 08:30 but so far I have been an hour late for both.Pictures: old empty blue room of Ward 5e versus new empty neutral room of Churchill, there was no bed or furniture when I arrived but that's taken care of now :-)
Friday, 10 July 2009
Introducing my new girlfriend Dolly...
Second day (day -7 with day 0 being cell infusion day) in hospital and last one in Ward 5E at the John Radcliffe, tomorrow the move to the Churchill hospital is a go; not sure what time exactly I'll move over, the plan is to get at least one chemo into me before going and then have the last one upon arrival as a welcome gift...
So far chemo has gone well, I think helped by being pretty "healthy" ahead of going in - ideal weight, reasonable stamina enough strength to lift up Luke...
Tomorrow will be the last day of chemo, Sunday a "rest day" and then Monday will be the start of radiotherapy, now with the advantage of just popping downstairs for treatment as opposed to being shipped back and forth from the JR to the Churchill and back by ambulance.
I have a new girlfriend, Dolly (the drip-stand). Here are some pictures of her dressed for the shower and "au nature
l". 
The heparin I tweeted about is a blood thinner to help protect my liver from the radiotherapy (total body irradiation - TBI) as TBI thickens the blood. It's a slow push syringe that squirts in 1ml over the course of an hour, it's the wide pump below the blue pump. I will be hooked up (continually) to this until day +30 so I have had to get used to taking Dolly into the shower with me and everywhere else...
I also have loads of fluids pumped into me currently to protect my bladder from the effects of the increased cyclophosphamide dose I am receiving as part of chemo (the other chemo is fludarabine), this will likely stop as of next week.
Putting on loads of weight because of all the fluids, I'm getting furosemide to make me go to the loo a lot to try and lose it and on that note, the call of nature beckons.
Dolly, time for walkies...
So far chemo has gone well, I think helped by being pretty "healthy" ahead of going in - ideal weight, reasonable stamina enough strength to lift up Luke...
Tomorrow will be the last day of chemo, Sunday a "rest day" and then Monday will be the start of radiotherapy, now with the advantage of just popping downstairs for treatment as opposed to being shipped back and forth from the JR to the Churchill and back by ambulance.
I have a new girlfriend, Dolly (the drip-stand). Here are some pictures of her dressed for the shower and "au nature
l". 
The heparin I tweeted about is a blood thinner to help protect my liver from the radiotherapy (total body irradiation - TBI) as TBI thickens the blood. It's a slow push syringe that squirts in 1ml over the course of an hour, it's the wide pump below the blue pump. I will be hooked up (continually) to this until day +30 so I have had to get used to taking Dolly into the shower with me and everywhere else...I also have loads of fluids pumped into me currently to protect my bladder from the effects of the increased cyclophosphamide dose I am receiving as part of chemo (the other chemo is fludarabine), this will likely stop as of next week.
Putting on loads of weight because of all the fluids, I'm getting furosemide to make me go to the loo a lot to try and lose it and on that note, the call of nature beckons.
Dolly, time for walkies...
Tuesday, 7 July 2009
Who shut JR???
Well it could be me - the hospital phoned have confirmed today that I should come in tomorrow (Wednesday) night to start treatment the following day (Thursday 9th July); the cord has arrived safely from the US and is being held by the National Blood Service over at the John Radcliffe.
Order of play then:
Even though I'm going to be in for 6 weeks at least, I'm packing light so the transfer to The Churchill is less of an ordeal, the bulk of the stuff will come over with the family on Sunday when they visit.
We had a look at the new ward at The Churchill last week when I had my line cleaned - the rooms look pretty good but mobile reception (for me at any rate) looks a bit dodgy...
Order of play then:
- Arrive JR Wednesday night
- Thursday chemo & heparin starts
- Saturday chemo finishes
- Saturday/Sunday - WARD 5E AT THE JR CLOSES AND TRANSFERS TO THE CHURCHILL
- Monday (13th) - radiotherapy starts, daily for 5 days
- Friday (17th) - last day of radiotherapy and stem cells (from the US & the surviving French ones) transplanted in
Even though I'm going to be in for 6 weeks at least, I'm packing light so the transfer to The Churchill is less of an ordeal, the bulk of the stuff will come over with the family on Sunday when they visit.
We had a look at the new ward at The Churchill last week when I had my line cleaned - the rooms look pretty good but mobile reception (for me at any rate) looks a bit dodgy...
Thursday, 2 July 2009
Puff Daddy
Voluntarily headed off to the Churchill Hospital yesterday, as my Hickman Line hasn't been used for over a week I needed to ensure that it was still OK (or patent as the medics say) and not blocked through things like blood drying up in it etc. from lack of use.
Fortunately everything was fine as in the worse case scenario of the nurses not being able to get it working I would have to have had a new line :-(
Whilst there though I was able to find out the results of my bone marrow test from the other week - it confirmed that I was still in remission and my Philadelphia Chromosome ratio had dropped from 4.5% to 0.06% which is excellent news (when first diagnosed it was around 82%...)
This is thanks to the Imatinib (Glivec) tablets I take daily, however there is one uncomfortable side effect that is exacerbated by the heatwave we are having, fluid retention that is causing my feet to look like bags of jelly at the end of my legs. My feet are too swollen for shoes and it's proving difficult to get into my sandals!
I've been prescribed Furosemide which seems to be working by making me pee like a cart horse to be blunt, which is fine when at home but caused some severe difficulties when we were stuck in the M40 traffic jam
I tweeted yesterday. Needless to say, plenty of country hedgerows were saved from drought on the drive back home along the back roads...
Fortunately everything was fine as in the worse case scenario of the nurses not being able to get it working I would have to have had a new line :-(
Whilst there though I was able to find out the results of my bone marrow test from the other week - it confirmed that I was still in remission and my Philadelphia Chromosome ratio had dropped from 4.5% to 0.06% which is excellent news (when first diagnosed it was around 82%...)
This is thanks to the Imatinib (Glivec) tablets I take daily, however there is one uncomfortable side effect that is exacerbated by the heatwave we are having, fluid retention that is causing my feet to look like bags of jelly at the end of my legs. My feet are too swollen for shoes and it's proving difficult to get into my sandals!
I've been prescribed Furosemide which seems to be working by making me pee like a cart horse to be blunt, which is fine when at home but caused some severe difficulties when we were stuck in the M40 traffic jam
I tweeted yesterday. Needless to say, plenty of country hedgerows were saved from drought on the drive back home along the back roads...
Saturday, 27 June 2009
Transplant & ANT Day updates
Firstly re. the Anthony Nolan Trust day event - many, many thanks for everyone that showed up. Although not everyone was eligible to be signed up, when Sarah left at about 19:00 (she left early to be at home with me because of the news about the cord) about 16 people had been actually signed up.
Apparently some more people arrived after that so although I don't think the magic number of 30 (the sort of "break even" number for ANT for such events), 16+ people were added which hopefully means 16 or so lives potentially saved somewhere in the world - you are heroes all of you!
News about the cord progress - I received a call from the hospital, if I'm understanding correctly it sounds like a couple of cords were found with the initial search that yielded the one that got damaged the other day.
It seems then that the hospital are in the process of securing a cord from the United States to supplement the viable bag from France - this is obviously very positive news and will keep folks posted as to what this means re. new dates for going into hospital.
Apparently some more people arrived after that so although I don't think the magic number of 30 (the sort of "break even" number for ANT for such events), 16+ people were added which hopefully means 16 or so lives potentially saved somewhere in the world - you are heroes all of you!
News about the cord progress - I received a call from the hospital, if I'm understanding correctly it sounds like a couple of cords were found with the initial search that yielded the one that got damaged the other day.
It seems then that the hospital are in the process of securing a cord from the United States to supplement the viable bag from France - this is obviously very positive news and will keep folks posted as to what this means re. new dates for going into hospital.
Wednesday, 24 June 2009
Transplant postponed
Having geared myself up psychologically for going into hospital tomorrow and received some wonderful words of encouragement and warm wishes from folks (many thanks for those!) I got a call earlier this evening at about 18:40 from the hospital with some bad news.
You probably recall that I was due to receive cells from a single umbilical cord (normally two cords are used owing to the size of cords and the number of cells they contain versus those required). It was received in Oxford today and apparently was transported in 2 halves; one bag split.
Although half the cord is still usable it is not enough to carry out the procedure and a new cord needs to be found, the team in the hospital is searching for one again through the Anthony Nolan Trust.
Effectively everything has been postponed 2-3 weeks as radiotherapy will need to be rescheduled amongst other things.
All in all not the news I wanted to hear this afternoon but trying to be philosophical about it, I get more time with the family, more time to build up my strength ahead of chemo etc. and who knows, maybe an even better match may be found.
You probably recall that I was due to receive cells from a single umbilical cord (normally two cords are used owing to the size of cords and the number of cells they contain versus those required). It was received in Oxford today and apparently was transported in 2 halves; one bag split.
Although half the cord is still usable it is not enough to carry out the procedure and a new cord needs to be found, the team in the hospital is searching for one again through the Anthony Nolan Trust.
Effectively everything has been postponed 2-3 weeks as radiotherapy will need to be rescheduled amongst other things.
All in all not the news I wanted to hear this afternoon but trying to be philosophical about it, I get more time with the family, more time to build up my strength ahead of chemo etc. and who knows, maybe an even better match may be found.
Monday, 15 June 2009
"You've got gallons of stem cells..."
Today (Monday) was first of the harvest days, I've had 4 days of the GCSF injections and my lower back and breast-bone/ribs were really painful, to the extent I couldn't pick things off of the floor and have had difficulty sleeping.
In a way then I was looking forward to the harvest but also apprehensive about it too because of the general procedure (see previous post). Anyways, we arrived around 08:20 right on time for our 08:30 appointment.
Things kicked off with a general tour and overview and then bloods taken to see if a harvest would be worthwhile (i.e. had I generated enough stem cells for collection), this is a quick test that says definite yes, definite no or maybe; I was a maybe and this prompted another longer test that took about an hour to complete.
So at about 10:10 the result was announced, they were looking for a number in the area of 8 or better. I was 60!!! Goodness knows then why the first test was so lukewarm then but it meant that it wasn't a wasted trip and the machine was prepped.
This took a fair while to hook up and once all was ready I had a local anaesthetic to my arm so that they could insert the needle that would draw the blood out of my body, the return blood was hooked up to my Hickman line as expected. However, the machine started complaining about the return line pressure and I ended up with a needle in the other arm for the return flow.
I was told that this isn't that uncommon as Hickman lines are designed for chemo and not the pressure of the "blood extraction machine" (there was a technical term they used but I've forgotten), it just made things awkward as my mobility was vastly reduced.
The procedure is 200 minutes and fortunately I was able to sleep for the first 103. When I woke up I discovered that the machine variables had been tweaked to eek out more cells from me given my high count (this had been discussed prior to me being hooked up so I was OK with that).
Spending the rest of the time was the nurses taking more blood (they were worried that I had spiked another temperature) and feeding me calcium tablets and milkshakes, a side effect of the procedure is that one of the anti-coagulants causes a transient calcium loss that causes a tingling in the lips, fingers, toes hence the calcium replacement measures.
Unhooking was uneventful - just a bit sore - and we set off home. Just before we got to Maidenhead I received a call from the hospital indicating that I "had gallons of stem cells", this is great news as it means that I don't need to go back tomorrow (Tuesday) and I don't need to have anymore injections - woo hoo!
A trip to Oxford is still on the cards for Tuesday though as it's the radiation test dose, at least though that's in the afternoon so tomorrow will hopefully be a less exhausting day.
Footnote:
Vincent was asking more about the procedure, stem cells and my treatment - I'll explain as best I can...
In a way then I was looking forward to the harvest but also apprehensive about it too because of the general procedure (see previous post). Anyways, we arrived around 08:20 right on time for our 08:30 appointment.
Things kicked off with a general tour and overview and then bloods taken to see if a harvest would be worthwhile (i.e. had I generated enough stem cells for collection), this is a quick test that says definite yes, definite no or maybe; I was a maybe and this prompted another longer test that took about an hour to complete.
So at about 10:10 the result was announced, they were looking for a number in the area of 8 or better. I was 60!!! Goodness knows then why the first test was so lukewarm then but it meant that it wasn't a wasted trip and the machine was prepped.
This took a fair while to hook up and once all was ready I had a local anaesthetic to my arm so that they could insert the needle that would draw the blood out of my body, the return blood was hooked up to my Hickman line as expected. However, the machine started complaining about the return line pressure and I ended up with a needle in the other arm for the return flow.
I was told that this isn't that uncommon as Hickman lines are designed for chemo and not the pressure of the "blood extraction machine" (there was a technical term they used but I've forgotten), it just made things awkward as my mobility was vastly reduced.
The procedure is 200 minutes and fortunately I was able to sleep for the first 103. When I woke up I discovered that the machine variables had been tweaked to eek out more cells from me given my high count (this had been discussed prior to me being hooked up so I was OK with that).
Spending the rest of the time was the nurses taking more blood (they were worried that I had spiked another temperature) and feeding me calcium tablets and milkshakes, a side effect of the procedure is that one of the anti-coagulants causes a transient calcium loss that causes a tingling in the lips, fingers, toes hence the calcium replacement measures.
Unhooking was uneventful - just a bit sore - and we set off home. Just before we got to Maidenhead I received a call from the hospital indicating that I "had gallons of stem cells", this is great news as it means that I don't need to go back tomorrow (Tuesday) and I don't need to have anymore injections - woo hoo!
A trip to Oxford is still on the cards for Tuesday though as it's the radiation test dose, at least though that's in the afternoon so tomorrow will hopefully be a less exhausting day.
Footnote:
Vincent was asking more about the procedure, stem cells and my treatment - I'll explain as best I can...
- The treatment today was to collect peripheral stem cells for my own use, the GCSF injections stimulate the bone marrow to over produce the white cells (hence the bone ache) and the blood collection machine extracts blood from me, spins out the cells and returns the rest.
- The stem cells are to be used only if the umbilical cord transplant fails, so the stimulation of white cells (although I believe in some instances this is used for some transplant patients)
- The cells taken from me today, should they be used, will return me to my current remission state with a likelihood of relapse so the umbilical cord is key as that is my chance for longer term survival
Thursday, 11 June 2009
Time flies when you're not in hospital
Well if you didn't know already, I was discharged from hospital last Saturday (6th) - hooray! - and can't believe how quickly the time has flown.
Despite being ready to go in the morning, logistics at hospital and home meant that it wasn't until early evening that I got home, it was fantastic though to sit and watch Robin Hood as a family and make a "pizza night" of it!
Sunday was a quiet day for us all and was just an opportunity to catch up with things in general and for me to start helping out around the house some; it gave me an opportunity to get to grips with some tasks I needed to get on with at home, breaking 2 computers wasn't on that list of things to do but somehow I accomplished it...
Monday a lot more hectic with school of course and Luke's swimming. I stayed in and didn't see much of Sarah but did get one of the computers working again better than before, but I think that's more luck and perseverance than anything else.
Tuesday was busy as it was a hospital visit to the Churchill for a discussion with the consultant about the radiotherapy treatment (more on that separately) and a follow-up on the discharge - no problems on that front but they did see that although my blood count is coming up, it's not coming up as quick as they would like for the harvest (more on that separately too!) so they have altered my tablet medication slightly to hopefully help.
Wednesday, morbid but necessary, we reviewed our wills and actually had quite a few amendments to make since they were drawn up in 2000 that took most of the morning and the rest of the day was more household tasks and an opportunity to drive Sarah around for a change. Also a trip to the dentist to ensure no infections there (which might jeopardise the transplant - yes you've guessed, more on that later too) and an unfortunate parking ticket as I didn't realise that they had changed the parking rules since February :-(
Today (Thursday) - PAPERWORK!!! Blimey, I don't know how Sarah's been able to cope with me generating all this additional medical & governmental paperwork! Anyway, I was able to help out a bit with that and with both of us on the phone in the study it was like we were running a little business! Oh, and we're having our boiler replaced too because otherwise we wouldn't be hectic enough...
Also today, my GCSF injections started - I'll cover this in the blog about harvesting - so having moved from a week of practically being bed-ridden and nothing to do it's all gone manic (and very tiring)!
Despite being ready to go in the morning, logistics at hospital and home meant that it wasn't until early evening that I got home, it was fantastic though to sit and watch Robin Hood as a family and make a "pizza night" of it!
Sunday was a quiet day for us all and was just an opportunity to catch up with things in general and for me to start helping out around the house some; it gave me an opportunity to get to grips with some tasks I needed to get on with at home, breaking 2 computers wasn't on that list of things to do but somehow I accomplished it...
Monday a lot more hectic with school of course and Luke's swimming. I stayed in and didn't see much of Sarah but did get one of the computers working again better than before, but I think that's more luck and perseverance than anything else.
Tuesday was busy as it was a hospital visit to the Churchill for a discussion with the consultant about the radiotherapy treatment (more on that separately) and a follow-up on the discharge - no problems on that front but they did see that although my blood count is coming up, it's not coming up as quick as they would like for the harvest (more on that separately too!) so they have altered my tablet medication slightly to hopefully help.
Wednesday, morbid but necessary, we reviewed our wills and actually had quite a few amendments to make since they were drawn up in 2000 that took most of the morning and the rest of the day was more household tasks and an opportunity to drive Sarah around for a change. Also a trip to the dentist to ensure no infections there (which might jeopardise the transplant - yes you've guessed, more on that later too) and an unfortunate parking ticket as I didn't realise that they had changed the parking rules since February :-(
Today (Thursday) - PAPERWORK!!! Blimey, I don't know how Sarah's been able to cope with me generating all this additional medical & governmental paperwork! Anyway, I was able to help out a bit with that and with both of us on the phone in the study it was like we were running a little business! Oh, and we're having our boiler replaced too because otherwise we wouldn't be hectic enough...
Also today, my GCSF injections started - I'll cover this in the blog about harvesting - so having moved from a week of practically being bed-ridden and nothing to do it's all gone manic (and very tiring)!
Wednesday, 3 June 2009
What happened to May???
May for me simply fell off the calendar thanks to numerous hospital trips both planned and unplanned totally knocking me out.
Thanks again particularly to Sarah and my Dad for standing by me so much through this with countless trips and visits but also thanks to Sarah's parents and the many wonderful friends back in Maidenhead who've helped look after the boys at a moment's notice.
I’ve provided some updates as to what’s happened since the last blog update back at the end of April and will provide a view of what's coming up when things have solidified a bit more.
Thanks again particularly to Sarah and my Dad for standing by me so much through this with countless trips and visits but also thanks to Sarah's parents and the many wonderful friends back in Maidenhead who've helped look after the boys at a moment's notice.
I’ve provided some updates as to what’s happened since the last blog update back at the end of April and will provide a view of what's coming up when things have solidified a bit more.
Infection
You may recall from earlier postings that infection is one of the critical things to guard against during treatment due to low-to-zero immune system. Remarkably I seemed to have protected myself against it since March but in May it all came crashing down…
• 4th-11th May
• 20th-26th May
• And now, 31st May – still here, trying to get my temperature stabilised…
All in all quite frustrating and in some instances alarming when my temperature kept climbing and I couldn’t stop shivering and shaking, but one thing that came out of it – for ages I’ve been (through my old doctor) under the misapprehension that I was allergic to Penicillin. I never used to be and it turns out that I never was! That at least makes things more manageable!
• 4th-11th May
• 20th-26th May
• And now, 31st May – still here, trying to get my temperature stabilised…
All in all quite frustrating and in some instances alarming when my temperature kept climbing and I couldn’t stop shivering and shaking, but one thing that came out of it – for ages I’ve been (through my old doctor) under the misapprehension that I was allergic to Penicillin. I never used to be and it turns out that I never was! That at least makes things more manageable!
Phase 2 complete, sort of…
So where I left off was 27th April (Sarah’s birthday for which I was able to organise a present and card – thank-you Internet!!) when I was 2 weeks into Phase 2.
Basically Phase 2 seemed relatively uneventful and I seemed to be able to tolerate the awful Cyclophosphamide better for the last 2 doses. In so saying, the constant driving (and I was just the passenger!), chemo, blood & platelet transfusions really took it out of me and even the days where I didn’t feel too bad, by the time I got home I’d had enough and just wanted to spend time with Sarah and then the boys when they got home.
The last full week of treatment was 12th-15th May (just after Jake’s birthday) but the last dose of Cyclophosphamide was 18th May and that wrapped up Phase 2, the only thing is that I’ve missed a couple of lumbar punctures mainly down to unfortunately hospital problems.
I don’t get away that easily though, it’s likely they’ll give me the intra-thecals during the transplant window.
Basically Phase 2 seemed relatively uneventful and I seemed to be able to tolerate the awful Cyclophosphamide better for the last 2 doses. In so saying, the constant driving (and I was just the passenger!), chemo, blood & platelet transfusions really took it out of me and even the days where I didn’t feel too bad, by the time I got home I’d had enough and just wanted to spend time with Sarah and then the boys when they got home.
The last full week of treatment was 12th-15th May (just after Jake’s birthday) but the last dose of Cyclophosphamide was 18th May and that wrapped up Phase 2, the only thing is that I’ve missed a couple of lumbar punctures mainly down to unfortunately hospital problems.
I don’t get away that easily though, it’s likely they’ll give me the intra-thecals during the transplant window.
Monday, 27 April 2009
Phase 2 - hmmm...
Phase 2 induction started last Tuesday. It's 4 days a week (Tuesday - Friday) over at the Churchill for 4 weeks and the main reason for it is to try and reduce further the presence of the leukaemia; remission doesn't mean it's gone "just" that normal cell production has resumed but the leukaemia has to be kept in check and that's the point of this consolidation.
Treatment is notionally straightforward:
As mentioned, the Cyclophosphamide (at least I think it's that) seems to be really affecting me - not just nausea but vomiting and vertigo too (I learned that vertigo isn't actually anything specifically to do with heights but the general sensation of dizziness and head spins).
We're not quite sure what's causing it - I'm still suffering even tonight but far more manageable than when I was literally falling over from it.
Anyways - felt a bit better yesterday (Sunday) and today but not 100%. Hoping that this week is easier.
Apologies then that I've been out of touch but it was only yesterday that I fired up any form of computer as to be honest I've been lying down and sleeping as much as possible which I'm sure you understand!
As it all starts again tomorrow - I may not be online too much until the weekend again.
Treatment is notionally straightforward:
- Cyclophosphamide - intravenous, fortunately only 3 times (every other week) as this one seems to really make me sick. Oh yeah and it's trying to knock out the remaining strands of hair I have...
- Cytosine arabinoside - intravenous, each day whilst at the hospital. On me seems to be causing a low-level nausea that anti-emetics like Ondansetron look to be controlling
- Mercaptopurine - tablets I take every night, seem to be OK on these
- Intra-thecal - every Wednesday :-(
As mentioned, the Cyclophosphamide (at least I think it's that) seems to be really affecting me - not just nausea but vomiting and vertigo too (I learned that vertigo isn't actually anything specifically to do with heights but the general sensation of dizziness and head spins).
We're not quite sure what's causing it - I'm still suffering even tonight but far more manageable than when I was literally falling over from it.
Anyways - felt a bit better yesterday (Sunday) and today but not 100%. Hoping that this week is easier.
Apologies then that I've been out of touch but it was only yesterday that I fired up any form of computer as to be honest I've been lying down and sleeping as much as possible which I'm sure you understand!
As it all starts again tomorrow - I may not be online too much until the weekend again.
Thursday, 16 April 2009
A stitch in time...
God moves in mysterious ways...
Something I didn't mention in my update about Monday was that when they told me my blood count levels, I questioned how the haemoglobin could have gone down so much when the other numbers seemed stable. The doctor agreed and checked the system and suggested a re-check, requiring more blood to be taken.
At this point I had been transferred to the Medical Assessment ward.
She was not familiar with drawing blood from my Hickman line and I refused to let her draw blood using a needle (you know I hate them, I was tired and annoyed from all the waiting and frankly didn't see why I had to go through that when the central line was there for that very purpose).
Anyway, Sarah mentioned to the doctor that someone from A&E (where we were initially admitted) may be able to do it as they had done the initial blood drawing. The doctor must have misheard because we had a nurse from Ward 5E (the cancer ward where I was an in-patient previously) come down and do the procedure in a matter of minutes.
Where am I going with this??? We took the opportunity to ask the nurse to check the line as where the tube comes out of my chest was still a bit red and was causing some slight discomfort - she had a look and noticed/hypothesised that a stitch was actually still there...
Any hoo - when I had the transfusion yesterday we asked the nurse they to double check - lo & behold there were some stitch remnants still there.
So double good news from the Monday night debacle:
Something I didn't mention in my update about Monday was that when they told me my blood count levels, I questioned how the haemoglobin could have gone down so much when the other numbers seemed stable. The doctor agreed and checked the system and suggested a re-check, requiring more blood to be taken.
At this point I had been transferred to the Medical Assessment ward.
She was not familiar with drawing blood from my Hickman line and I refused to let her draw blood using a needle (you know I hate them, I was tired and annoyed from all the waiting and frankly didn't see why I had to go through that when the central line was there for that very purpose).
Anyway, Sarah mentioned to the doctor that someone from A&E (where we were initially admitted) may be able to do it as they had done the initial blood drawing. The doctor must have misheard because we had a nurse from Ward 5E (the cancer ward where I was an in-patient previously) come down and do the procedure in a matter of minutes.
Where am I going with this??? We took the opportunity to ask the nurse to check the line as where the tube comes out of my chest was still a bit red and was causing some slight discomfort - she had a look and noticed/hypothesised that a stitch was actually still there...
Any hoo - when I had the transfusion yesterday we asked the nurse they to double check - lo & behold there were some stitch remnants still there.
So double good news from the Monday night debacle:
- A top-up has given me more energy for a great day today, hopefully for the boys return tomorrow and for Phase 2 next week
- My Hickman line should heal properly now and if the stitch had stayed any longer there was a risk the skin would have covered it completely and made life difficult later
Tuesday, 14 April 2009
37.5 and rising...
Because of my neutropenic condition, when I was discharged from Ward 5E I was told to get in touch with them if my temperature hits 37.5 Celsius.
Whilst 37.5 is normal for most, my reduced immune system makes this a trigger point temperature whereby precautionary measures are taken to ensure I don't go critical through infection.
Anyway, yesterday (Easter Monday) I noticed my temperature rising to the highest it's been for a while - taking my temperature at regular intervals in the day is second nature to me now - and I hit 37.52 around 18:30.
Phoning Ward 5E, despite me feeling fine, after they consulted they rang back and wanted me to come in. No beds so they said I had to go to John Radcliffe A&E.
By the time Sarah & I had packed (fortunately the boys had gone to their grandparents earlier in the day which was planned anyway) and got to JR, it was about 21:20.
It was all a bit of a disaster and in the end we effectively discharged ourselves at 5am this (Tuesday) morning as temperature came back down of its own accord and everything else seemed in order.
However, it did yield that my blood count was low (haemoglobin) so I need to go in for a transfusion at the Churchill tomorrow (Wednesday) - it will likely take the better part of the day.
So a bit frustrated as the Monday night thing was a stressful nightmare and my treatment free week now means a second trip to Oxford as well as missing a lot of today owing to catching up with sleep this morning - very lucky we didn't have to take care of the boys!!
Being positive about it though, the transfusion should make me feel a bit stronger for the remainder of the week and should stand me in better stead for Phase 2 Induction next week.
Well it's 23:57 (& 36.99 Celsius) & time for me to turn in before my eyes fall out of my head!
Whilst 37.5 is normal for most, my reduced immune system makes this a trigger point temperature whereby precautionary measures are taken to ensure I don't go critical through infection.
Anyway, yesterday (Easter Monday) I noticed my temperature rising to the highest it's been for a while - taking my temperature at regular intervals in the day is second nature to me now - and I hit 37.52 around 18:30.
Phoning Ward 5E, despite me feeling fine, after they consulted they rang back and wanted me to come in. No beds so they said I had to go to John Radcliffe A&E.
By the time Sarah & I had packed (fortunately the boys had gone to their grandparents earlier in the day which was planned anyway) and got to JR, it was about 21:20.
It was all a bit of a disaster and in the end we effectively discharged ourselves at 5am this (Tuesday) morning as temperature came back down of its own accord and everything else seemed in order.
However, it did yield that my blood count was low (haemoglobin) so I need to go in for a transfusion at the Churchill tomorrow (Wednesday) - it will likely take the better part of the day.
So a bit frustrated as the Monday night thing was a stressful nightmare and my treatment free week now means a second trip to Oxford as well as missing a lot of today owing to catching up with sleep this morning - very lucky we didn't have to take care of the boys!!
Being positive about it though, the transfusion should make me feel a bit stronger for the remainder of the week and should stand me in better stead for Phase 2 Induction next week.
Well it's 23:57 (& 36.99 Celsius) & time for me to turn in before my eyes fall out of my head!
Thursday, 9 April 2009
Remission Accomplished...
Some great news ahead of the Easter break - yesterday I was over at The Churchill for bloods to be taken and also a bone marrow sample to check progress.
Blood numbers have been trending in the right direction for a while and a bit earlier today we got the call from the hospital indicating that under the microscope they cannot see the leukaemia cells and that I am in remission.
Naturally I'm not out of the woods yet, it will be a couple of weeks yet before we know whether the Philadelphia chromosome condition is under control.
Going forward, next week is a clear week but the week after that will be the start of Phase 2 Induction - quite intense as it's 4 days a week at the hospital for chemo, I'll blog more when I've looked into it!
In the meantime the quest for a bone marrow donor continues as does the investigation into other avenues now such as stem cells from umbilical cord blood.
Anyways that's a subject for another post, I'm still a little zoned out from yesterday's sedation & procedures but wishing you all a happy Easter!
Blood numbers have been trending in the right direction for a while and a bit earlier today we got the call from the hospital indicating that under the microscope they cannot see the leukaemia cells and that I am in remission.
Naturally I'm not out of the woods yet, it will be a couple of weeks yet before we know whether the Philadelphia chromosome condition is under control.
Going forward, next week is a clear week but the week after that will be the start of Phase 2 Induction - quite intense as it's 4 days a week at the hospital for chemo, I'll blog more when I've looked into it!
In the meantime the quest for a bone marrow donor continues as does the investigation into other avenues now such as stem cells from umbilical cord blood.
Anyways that's a subject for another post, I'm still a little zoned out from yesterday's sedation & procedures but wishing you all a happy Easter!
Tuesday, 7 April 2009
That was the week that was
So before it's too far a distant memory, an update on last week...
Treatment was meant to be pretty light with just Monday, Wednesday & Friday Caspofungin drips (Asparaginase jabs Monday too) planned and in theory should have been just "in & out".
Monday though proved to be quite a long day - had the jabs and the drip but a side effect of the Asparaginase is it reduces the clotting factor in the blood hence I had to have an infusion of FFP which took time as it requires ordering, thawing and of course administration. Coupled with a later than planned start anyway - it wasn't until about 18:00 that I was settled back at home and pretty tired. The upside was I was able to spend quite a bit of time with my Dad before he flew out to Mauritius.
Wednesday was quick but unfortunately accelerated owing to the news whilst we were in the hospital that Luke gashed his head at nursery and that they were taking him to hospital. Fortunately I had nearly finished with the Caspofungin, so whilst Sarah and I were both shaken up by the news we were at least able to call around for help and actually head back almost immediately. Fortunately things had sorted out by the time we got back without him having to go to Wycombe hospital (the original plan) however St. Marks did insist he got checked out at Wexham Park.
Sarah dropped me off at home as things didn't seem as drastic with Luke, plus it would be a long wait and more significantly we both thought it would be better to avoid another hospital (infection risk). Luke came home later - OK all things considered and fortunately they were able to use a bunch of steristrips rather than stitches. The strips will come off this Wednesday, we've been keeping his head dry in the interim...
Friday was a quick day thank goodness but the steroid tapering was really having an impact on me by then and to be honest it's only today that I've felt like "working" - the good news on Friday was that I was given this current week as a "week off". Except Wednesday (tomorrow) where it is planned to take a bone marrow sample to see where I am.
So that's last week - not much to blog for this week as it's supposed to be a quiet one but likely to be significant if the bone marrow analysis is finished ahead of the Easter weekend...
Treatment was meant to be pretty light with just Monday, Wednesday & Friday Caspofungin drips (Asparaginase jabs Monday too) planned and in theory should have been just "in & out".
Monday though proved to be quite a long day - had the jabs and the drip but a side effect of the Asparaginase is it reduces the clotting factor in the blood hence I had to have an infusion of FFP which took time as it requires ordering, thawing and of course administration. Coupled with a later than planned start anyway - it wasn't until about 18:00 that I was settled back at home and pretty tired. The upside was I was able to spend quite a bit of time with my Dad before he flew out to Mauritius.
Wednesday was quick but unfortunately accelerated owing to the news whilst we were in the hospital that Luke gashed his head at nursery and that they were taking him to hospital. Fortunately I had nearly finished with the Caspofungin, so whilst Sarah and I were both shaken up by the news we were at least able to call around for help and actually head back almost immediately. Fortunately things had sorted out by the time we got back without him having to go to Wycombe hospital (the original plan) however St. Marks did insist he got checked out at Wexham Park.
Sarah dropped me off at home as things didn't seem as drastic with Luke, plus it would be a long wait and more significantly we both thought it would be better to avoid another hospital (infection risk). Luke came home later - OK all things considered and fortunately they were able to use a bunch of steristrips rather than stitches. The strips will come off this Wednesday, we've been keeping his head dry in the interim...
Friday was a quick day thank goodness but the steroid tapering was really having an impact on me by then and to be honest it's only today that I've felt like "working" - the good news on Friday was that I was given this current week as a "week off". Except Wednesday (tomorrow) where it is planned to take a bone marrow sample to see where I am.
So that's last week - not much to blog for this week as it's supposed to be a quiet one but likely to be significant if the bone marrow analysis is finished ahead of the Easter weekend...
Monday, 6 April 2009
Apologies for the lack of updates
Just wanted to blog a quick update about the lack of updates - steroid withdrawal (I'm assuming it is this that's causing it) is really knocking me out. I'm not sleeping well at night and find it difficult to sleep during the day, consequently I'm pretty tired and feel spaced out a lot.
As well I'm feeling quite sick - either bloated sick, hungry sick, tired sick or some combination...
Have been feeling a bit low (physically) then and not really up to social networking duties! Plus to be honest when I have had sessions of feeling bright & with it, I've elected to spend time with family and/or sit outside to enjoy the time I have to myself.
Will definitely start catching up soon though - hope you understand!
As well I'm feeling quite sick - either bloated sick, hungry sick, tired sick or some combination...
Have been feeling a bit low (physically) then and not really up to social networking duties! Plus to be honest when I have had sessions of feeling bright & with it, I've elected to spend time with family and/or sit outside to enjoy the time I have to myself.
Will definitely start catching up soon though - hope you understand!
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