The FANTASTIC news we've been waiting for, my stem cells have successfully engraft, and my neutrophil count is up to 0.5. It's very likely the count will continue to rise, and I'll soon be out of isolation....yippppie!! How great does that feel...Len and I both had tears in our eyes!!
.........and just when I thought I'd seen it all, along comes synthetic saliva...in an aerosol can. I've still got a dry mouth due to the chemo, and this has been offered to me as the solution to all my woes. You spray it directly into your mouth. It is literally like having someone spit on your tongue!! I've got natural flavour (whatever that means), but it does apparently come in 'bronchitis' and 'pneumonia' flavours for a special treat!!
You know what, who cares, MY STEM CELLS HAVE ENGRAFT!!!!!!!
Thursday 31 January 2013
Tuesday 29 January 2013
Ups and Downs
There's been plenty of ups and downs over the last few days. On Sunday Marcus and Len came up to visit, which gave me a real lift. We even went for a walk outside (me with my wacko jacko face mask on), the first fresh air I've experienced for two weeks....well, as fresh as it can be in Hammersmith!!
Yesterday was not a good day. I didn't sleep well the previous night and just felt tired and ill all day. I also had a temperature spike, so the doctor started me on IV antibiotics....they're not prepared to wait and take any risk of infection at this stage, and rightly so. My platelet count had dropped to 11, so I also ended up having a platelet transfusion.
Today has been much better, my temperature is almost back to normal, platelets are now 46 and I'm feeling brighter. Even the ulcers in my mouth seem to be improving. The only minor blot on the landscape is a painful skin infection I've got under my armpit. The doctors aren't unduly worried by it and hopefully the antiseptic cream I've been given will clear it over the next few days.
So, another day ticked off, another day closer to waving goodbye to hospital food!!
Yesterday was not a good day. I didn't sleep well the previous night and just felt tired and ill all day. I also had a temperature spike, so the doctor started me on IV antibiotics....they're not prepared to wait and take any risk of infection at this stage, and rightly so. My platelet count had dropped to 11, so I also ended up having a platelet transfusion.
Today has been much better, my temperature is almost back to normal, platelets are now 46 and I'm feeling brighter. Even the ulcers in my mouth seem to be improving. The only minor blot on the landscape is a painful skin infection I've got under my armpit. The doctors aren't unduly worried by it and hopefully the antiseptic cream I've been given will clear it over the next few days.
So, another day ticked off, another day closer to waving goodbye to hospital food!!
Saturday 26 January 2013
Measure of a Gentleman
Day 9 and feeling better today than I have for the past 2 days. The diarrhea has continued with the added bonus of mouth ulcers thrown into the mix. With my blood counts at rock bottom, my energy levels are also very low. That said, even though my white blood cell count remains at zero, I've maintained a good Hb of 10.6, which has meant no transfusions up till now. The biggest 'surprise' and a real plus for me so far is that I haven't picked up a fever or any kind of infection, which has meant no antibiotics. So, all being well, I start on the growth hormone injections tomorrow, which should kick start my cell production and ultimately lift my blood counts. Another plus for my transplant was the number of stem cells put back in on Day zero. They collected four bags of cells before Christmas, each containing five million stem cells. They say you need around two million cells for a successful transplant, so with more than double that fed back in (the remaining three bags have been frozen to support future transplants), I've got to be confident of a positive cell engraftment.
Anyway, enough of the medical stuff, over the last few days I've also decided on the true measure of a gentleman, and that based on that measure, I'm a true gent....a real catch!! So, over the last three days I've had to provide a stool (as in poo) sample to make sure I haven't got an infection. For the sample I was given a bed pan, sample bottle/test tube and a choice of how to present it (the nurse didn't literally give me a choice....I had to think for myself). So, should I just leave the sample in the pan, put the sample in the bottle and let the nurse clean the pan or complete a controlled release, put the sample in the bottle and clean out the pan. Well, as a true gent and in truth, feeling too guilty to let the nurse 'clean up my mess', I chose the later. So, there you have it, even when I'm not feeling at my best, I'm still too much of a gentleman to subject a nurse to stool scooping. What a gent!!
Anyway, enough of the medical stuff, over the last few days I've also decided on the true measure of a gentleman, and that based on that measure, I'm a true gent....a real catch!! So, over the last three days I've had to provide a stool (as in poo) sample to make sure I haven't got an infection. For the sample I was given a bed pan, sample bottle/test tube and a choice of how to present it (the nurse didn't literally give me a choice....I had to think for myself). So, should I just leave the sample in the pan, put the sample in the bottle and let the nurse clean the pan or complete a controlled release, put the sample in the bottle and clean out the pan. Well, as a true gent and in truth, feeling too guilty to let the nurse 'clean up my mess', I chose the later. So, there you have it, even when I'm not feeling at my best, I'm still too much of a gentleman to subject a nurse to stool scooping. What a gent!!
Wednesday 23 January 2013
Neutropenic
It's official, the signs have gone up on the door, time to stop mixing with the great unwashed, salads are off the menu, it's the start of my protective isolation, I'm neutropenic. My neutrophils are now 0.1 and anything under 0.5 is considered neutropenic. They were 'expecting' a spike in my temperature last night, but I had a good night sleep and up until now all my vitals have been good. My Hb or haemoglobine count is 10, my platelets 89, so no need for any blood transfusions just yet...that will come later this week though. No real mouth ulcers to write home about so, the key for my body over the next week is to avoid picking up an infection. If I do I'll be hooked up on IV antibiotics so they can quickly gain control. I'm even starting to eat a bit more now, which is just as well because my weight has dropped from 83 to 79kg since the chemo. Todays menu, home made tomato and bacon risotto, freshly prepared at the E Rd kitchen by my good wife...lovely...mind you, it keeps her busy whilst I'm not around to annoy her!!
So, I guess in summary, it's all currently going to plan as far as treatment and my reaction to it are concerned. I am the star patient according to my doctor, stats always good, no hassle....teachers pet in many respects!! Could try to pick up an exotic virus just to stretch her, but you know what, I'm thinking the current situation suits us both just fine. Supposedly, now I'm neutropenic, the side effects from the chemo will increase again, since my body can't fight. But, for today (day 6), I'm feeling fine....tomorrow....well, that's tomorrow!
So, I guess in summary, it's all currently going to plan as far as treatment and my reaction to it are concerned. I am the star patient according to my doctor, stats always good, no hassle....teachers pet in many respects!! Could try to pick up an exotic virus just to stretch her, but you know what, I'm thinking the current situation suits us both just fine. Supposedly, now I'm neutropenic, the side effects from the chemo will increase again, since my body can't fight. But, for today (day 6), I'm feeling fine....tomorrow....well, that's tomorrow!
Sunday 20 January 2013
Day 3 and feeling better
Day 3 (Day 0 being the stem cell transplant) and I'm feeling better when it comes to the nausea. I still have my ups and downs, one moment feeling dizzy and sick, the next....just feeling old, but overall it's improving day by day. My neurophil count is currently 2, so I'm not likely to go neutropenic until Tuesday....but we'll just have to wait and see what joys that brings!! Every meal time remains a chore, with absolutely no appetite, but realizing that I've got to eat.
It's been great to be able to keep in contact with many of you via text, Skype and phone calls, helps keep my spirits up and boredom to a minimum. Len and Marcus came up to visit yesterday and it was fun to hear Marcus' mad dog extreme winter sports stories from the hardcore peaks of Richmond Park....surprised the lad made it out alive!! Looking forward to seeing wifey again tomorrow...with a bag full of clean laundry....got to keep her busy!!
It's been great to be able to keep in contact with many of you via text, Skype and phone calls, helps keep my spirits up and boredom to a minimum. Len and Marcus came up to visit yesterday and it was fun to hear Marcus' mad dog extreme winter sports stories from the hardcore peaks of Richmond Park....surprised the lad made it out alive!! Looking forward to seeing wifey again tomorrow...with a bag full of clean laundry....got to keep her busy!!
Thursday 17 January 2013
Extreme nausea
Yesterday was not much fun....wouldn't wish a day like that on anyone. I felt severely nauseous from about 4am Wednesday morning all the way through to about midday today...you know, just when you're on the verge of throwing up the whole time. Unfortunately all the anti nausea drugs in the world couldn't get on top of it. I couldn't get to sleep....not even with the soothing waterfall percussion coming from the man in the room above me weeing every hour, so it all adds up. Before you ask, I haven't yet witnessed a number two resonating through the concrete ceiling!! My appetite has also disappeared, so trying to get any sort of food down me is a real chore...but I've got to try so I can keep my strength up for when I go neutropenic.
Unfortunately the nausea ment that I couldn't fully appreciate the actually stem cell transplant that took place at 10:30 this morning. Fortunately Len was up here to enjoy the whole 'Heston Blumenthal' experience. The nurse brought the stem cells, which were cryogenically frozen, into the room in a tank of liquid Nitrogen and proceeded to immerse them in a warming bath to thaw them out. They were then served to me in an IV drip bag. No side effects from the re-introduction of the stem cells so far.
Anyway, I'm feeling a little better now (hence the blog) and hopefully things will continue to improve from a nausea perspective over the next few days. Hang in there Hoban!!
Unfortunately the nausea ment that I couldn't fully appreciate the actually stem cell transplant that took place at 10:30 this morning. Fortunately Len was up here to enjoy the whole 'Heston Blumenthal' experience. The nurse brought the stem cells, which were cryogenically frozen, into the room in a tank of liquid Nitrogen and proceeded to immerse them in a warming bath to thaw them out. They were then served to me in an IV drip bag. No side effects from the re-introduction of the stem cells so far.
Anyway, I'm feeling a little better now (hence the blog) and hopefully things will continue to improve from a nausea perspective over the next few days. Hang in there Hoban!!
Tuesday 15 January 2013
Room 13
Been a bit of a waiting game today (well, actually a day of weeing into bottles...enough said) but the chemo is finally in. Unfortunately it was delayed by 6 hours.....my northside brothers got the first mix wrong....but, as they say, there's no going back now!! Len's here for both support and as apprentice ice lolly lady.....apparently it reduces the potential for mouth ulcers. For now, I'm all good.
Monday 14 January 2013
Let the battle commence
So, the big day has arrived. Dad is going to take me up to hospital, check in 16:30. Many thanks for all your kind words of support, notes, presents and/or sarcastic abuse. Please do keep up the blog comments, text or e-mail....they do give me a real lift. I intend to write as many posts as I can whilst I'm in isolation, depending on how I'm feeling....one day at a time. It's also fantastic to know that Len will be able to visit me, even when I'm neutropenic....the doctors are more concerned about me becoming infected from my own body than potentially any external source.
It's been a great lead in weekend for me....if I conveniently forget the disaster that is Arsenal FC and the fact that our fish tank decided to start leaking. I even got to choose my favouite meals for Saturday and Sunday (opted for skate wings and lamb chops)...little bit like being on death row I guess!! From now on it's a special menu for me....all fruit and veg needing to be cooked to within an inch of it's life to ensure no bugs (or vitamins) remain. Saying that, by all accounts I'm not likely to have much of an appetite whilst I'm in quarantine.
Deep breath, think positive, here we go.
It's been a great lead in weekend for me....if I conveniently forget the disaster that is Arsenal FC and the fact that our fish tank decided to start leaking. I even got to choose my favouite meals for Saturday and Sunday (opted for skate wings and lamb chops)...little bit like being on death row I guess!! From now on it's a special menu for me....all fruit and veg needing to be cooked to within an inch of it's life to ensure no bugs (or vitamins) remain. Saying that, by all accounts I'm not likely to have much of an appetite whilst I'm in quarantine.
Deep breath, think positive, here we go.
Friday 11 January 2013
Order of Events
Ok, here we go...some info on the order of events over the next few weeks. If nothing else, at least you'll have a better idea of when to phone me up and explain how healthy you're feeling!!
The fun all kicks off next Monday 14th at 16:00, when I'll start by taking some lung medicine through a Nebuliser (a machine that creates a mist of medicine, which is then breathed in through a mask) before I have the high dosage chemotherapy. As I understand it, this will help protect my lungs from bacterial infection such as pneumonia when I go neutropenic.
Tuesday 15th (Day -2) - in goes the Melphalan. Apparently this particular chemo tends to effect the gut, so mouth/stomach ulcers and diarrhoea are all thrown into together with the other potential side effects.....am I selling it to you?
Day -1 - a rest day so I can really take my time and enjoy the mouth ulcers, nausea and diarrhoea.
Day 0 - the stem cells collected before Christmas go back in. This will be done intravenously through my Hickman line, where the stem cells are fed back into my blood stream, from where they 'somehow' know to migrate back into my bone marrow. I hope my stem cells have a good sense of direction, but I promise to post pictures if other limbs etc start to appear!!
Day 3/4/5 - this is when I'm likely to go neutropenic as a result of the high dosage chemo destroying part of my bone marrow. A this point my neutrophiles are effectively zero, so my body will have no natural ability to fight infections. I'm very likely to have an infection/fever, or infections during the time I'm neutropenic, which are likely to originate from my own body. All the various bugs and bacteria which are always present and usually dealt with by a normal immune system will have nothing to hold them back. This is when it will be vital for the medical staff to identify the source of the infection and treat it with the appropriate antibiotics. Even my Hickman line is a potential source for infection. During this period I'm also going to feel very tired and lethargic, as the chemo will also destroy my red blood cells and platelets (blood clotting cells). As a result I'll require transfusions until my blood counts recover. If the chemo didn't sell it to you, I hope this has!!
Day 10 - we start with the GCSF growth hormone injections, which give a boost to the bone marrow cells. These are the same injections I had as part of the stem cell mobilisation, before Christmas, with the main aim of putting marrow cell production into overdrive.
Day 12/13/14- it's hoped at this stage that the stem cells have started to engraft and my blood counts are improving. This being the case I will be weaned off antibiotics and other medications.
Once my neutrophiles have reached a safe level (1 to 1.5)....hopefully only a number of days later...I'm out of there!! We're then looking at a 3 to 6 month recovery period as my blood counts continue to improve and my strengh hopefully returns to somewhere near pre transplant levels.
The above 'schedule' TOTALLY assumes there are no major complications throughout the transplant, which will set me back. Who knows how my body will react.....this whole process will be very tough on my organs. What I do know is that I'm going into this final stage of my treatment feeling confident, but realistic. As I stated in my last blog, my body has tolerated the treatment very well so far.....not only that, but I have age and your positive thoughts and prayers on my side. My apprehension is really starting to build as Monday gets closer....it's been a bit of a waiting game this week. The sooner I start, the sooner it will be over and the sooner I can begin that long road to recovery and a return to a more normal life.
The fun all kicks off next Monday 14th at 16:00, when I'll start by taking some lung medicine through a Nebuliser (a machine that creates a mist of medicine, which is then breathed in through a mask) before I have the high dosage chemotherapy. As I understand it, this will help protect my lungs from bacterial infection such as pneumonia when I go neutropenic.
Tuesday 15th (Day -2) - in goes the Melphalan. Apparently this particular chemo tends to effect the gut, so mouth/stomach ulcers and diarrhoea are all thrown into together with the other potential side effects.....am I selling it to you?
Day -1 - a rest day so I can really take my time and enjoy the mouth ulcers, nausea and diarrhoea.
Day 0 - the stem cells collected before Christmas go back in. This will be done intravenously through my Hickman line, where the stem cells are fed back into my blood stream, from where they 'somehow' know to migrate back into my bone marrow. I hope my stem cells have a good sense of direction, but I promise to post pictures if other limbs etc start to appear!!
Day 3/4/5 - this is when I'm likely to go neutropenic as a result of the high dosage chemo destroying part of my bone marrow. A this point my neutrophiles are effectively zero, so my body will have no natural ability to fight infections. I'm very likely to have an infection/fever, or infections during the time I'm neutropenic, which are likely to originate from my own body. All the various bugs and bacteria which are always present and usually dealt with by a normal immune system will have nothing to hold them back. This is when it will be vital for the medical staff to identify the source of the infection and treat it with the appropriate antibiotics. Even my Hickman line is a potential source for infection. During this period I'm also going to feel very tired and lethargic, as the chemo will also destroy my red blood cells and platelets (blood clotting cells). As a result I'll require transfusions until my blood counts recover. If the chemo didn't sell it to you, I hope this has!!
Day 10 - we start with the GCSF growth hormone injections, which give a boost to the bone marrow cells. These are the same injections I had as part of the stem cell mobilisation, before Christmas, with the main aim of putting marrow cell production into overdrive.
Day 12/13/14- it's hoped at this stage that the stem cells have started to engraft and my blood counts are improving. This being the case I will be weaned off antibiotics and other medications.
Once my neutrophiles have reached a safe level (1 to 1.5)....hopefully only a number of days later...I'm out of there!! We're then looking at a 3 to 6 month recovery period as my blood counts continue to improve and my strengh hopefully returns to somewhere near pre transplant levels.
The above 'schedule' TOTALLY assumes there are no major complications throughout the transplant, which will set me back. Who knows how my body will react.....this whole process will be very tough on my organs. What I do know is that I'm going into this final stage of my treatment feeling confident, but realistic. As I stated in my last blog, my body has tolerated the treatment very well so far.....not only that, but I have age and your positive thoughts and prayers on my side. My apprehension is really starting to build as Monday gets closer....it's been a bit of a waiting game this week. The sooner I start, the sooner it will be over and the sooner I can begin that long road to recovery and a return to a more normal life.
Sunday 6 January 2013
118 Percent
Blog groupies wait for no man (so Len tells me), so it's probably best that I provide an update on what's been happening in my drug fuelled life since New Year. To put it simply, I'm now officially 118 percent of the man I should be for my age and body mass.To most of you, this probably comes as no surprise, but for the doubters amongst you, I feel abliged to explain this some what bold statement.
I went up to Hammersmith hospital on 2nd Jan for my pre transplant 'work up'. This was to confirm that my vital organs are strong enough to go through the high dosage therapy and consisted of various heart tests (ECG and blood flow), chest X-Ray and lung function. They also took a LITRE of my blood for various tests (I did have slightly raised eyebrows when I heard how much was being taken). As far as I'm aware the results were all positive, but it was my lung function that was particularly impressive, being 118% of the predicted level. I've simply taken this figure and logically applied it to my entire manhood.....statistics never lie you know :-). Most importantly, if anyone's got a kiddies party coming up and you need loads of baloons blowing up....I'm ya man!!
On a serious note, this all means that I'm good to go when it comes to the transplant. The latest plan has me going in on Monday 14th Jan, with the high dosage therapy on 15th and the stem cells reintroduced on the 17th. Part of the 'work up' also involved a discussion with one of the transplant ward doctors, to run through the schedule of treatment and likely scenarios/side effects. I'll update you with more details in my next blog. What I will say is that I've tolerated the treatment well up till now, and with age on my side I'm going to try and approach this as positively and confidently as I can. I do however realise that this final stage of treatment will be far more aggressive to my body than the previous phases, and the likelihood is that I'll pick up infections whilst I'm neutropenic i.e. have no white blood cells/antibodies as a result of the chemotheraphy killing off that part of my bone marrow. Again, side effects from the chemotherapy and re-introduction of my stem cells can vary, but I've been talking a lot with my body during this treatment and I will continue to do so, as it's done me proud up till now.
As I said, I'll give you a more detailed view of what's to come in my next blog.....but for now its off to bed for this 118% man!!
I went up to Hammersmith hospital on 2nd Jan for my pre transplant 'work up'. This was to confirm that my vital organs are strong enough to go through the high dosage therapy and consisted of various heart tests (ECG and blood flow), chest X-Ray and lung function. They also took a LITRE of my blood for various tests (I did have slightly raised eyebrows when I heard how much was being taken). As far as I'm aware the results were all positive, but it was my lung function that was particularly impressive, being 118% of the predicted level. I've simply taken this figure and logically applied it to my entire manhood.....statistics never lie you know :-). Most importantly, if anyone's got a kiddies party coming up and you need loads of baloons blowing up....I'm ya man!!
On a serious note, this all means that I'm good to go when it comes to the transplant. The latest plan has me going in on Monday 14th Jan, with the high dosage therapy on 15th and the stem cells reintroduced on the 17th. Part of the 'work up' also involved a discussion with one of the transplant ward doctors, to run through the schedule of treatment and likely scenarios/side effects. I'll update you with more details in my next blog. What I will say is that I've tolerated the treatment well up till now, and with age on my side I'm going to try and approach this as positively and confidently as I can. I do however realise that this final stage of treatment will be far more aggressive to my body than the previous phases, and the likelihood is that I'll pick up infections whilst I'm neutropenic i.e. have no white blood cells/antibodies as a result of the chemotheraphy killing off that part of my bone marrow. Again, side effects from the chemotherapy and re-introduction of my stem cells can vary, but I've been talking a lot with my body during this treatment and I will continue to do so, as it's done me proud up till now.
As I said, I'll give you a more detailed view of what's to come in my next blog.....but for now its off to bed for this 118% man!!
Tuesday 1 January 2013
Here's to a Healthy 2013
Happy New Year to you all!
I hope you made a better attempt at getting blind drunk than my pathetic efforts.....half an ale, glass of white wine and two glasses (steady now) of champagne. That said we had a great time last night....the first New Year spent with my parents since I was about 15!
78 years old and they've still both got more stamina and energy than me!! Not only that, they were both up for a bit of midnight 'Gangnam Style', choreographed by a patient, if slightly embarrased Marcus. Ehhhhhhh.....sexy lady!!
We've had a relatively chillaxed Christmas (apart from the last minute panics associated with cooking Christmas dinner) and its been fantastic to meet up with friends over the holidays. We've enjoyed a number of Christmas get togethers with local friends and I even met up with an old university mate who I hadn't seen for the best part of 12 years. Once again, it gives myself, Len and Marcus such a lift knowing just how supportive and encouraging you all are. I'll be taking your love and positive vibes when I go into hospital on the 13th for my transplant....and I'll be taking your names in vain when I've got my head buried down the toilet after my next round of chemotheraphy!!
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| We wish you and your families a healthy 2013. Much love to you all! |
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