I have decided not to have the stem cell transplant. I have let the hospital know and I will have my Groshong line removed on Friday. That makes it pretty final. There are some worries, as always, but I am feeling very confident. The fact that the scan was comepletely clear very much influenced this decision and also makes a lot easier to tell people it's all over without going into detail about not having SCT - I think they just pressume it's no longer required by the hospital. I'm certainly not going to worry them with the ins and outs of it all.
My homeopathy has started, which isn't so many pills as I had imagined. I have also just booked a trip to Spain. On my own for 2 weeks so I can eat, think, read, and walk health. If that doesn't focus me I don't know what will. There'll be nothing else to do but focus!
Even if it doesn't work out this time my stem cells are banked and ready to go; but that's not going to happen.
On a lighter note, my hair has started to grow back and checking myself out in the mirror today I noticed two grey hairs. I was hoping they would not return, but alas it seems they have; well, I am nearing my thirties!
Tuesday, June 20, 2006
Friday, June 16, 2006
Re: mission
Yesterday I had the results of my CT scan and it was good, I quote,
"The chemotherapy couldn't have gone any better".
There were no signs of tumours anywhere. So what does this mean? Well, they still want to go ahead with stem cell therapy to make sure that any remaing cells, too small to be picked up by CT, are killed off. The statistics show that this then gives you a 50/50 chance of not developing cancer again. Along with associated future problems of the BEAM chemo that they give you just before returning the stem cells to you. These include heart, lung, bone, liver, kidney etc. problems. None of these are life threatening problems and there is only a small risk of developing them, but the risk is there.
So, not really sure what to do with this one. I am now leaning toward not having the SCT. But that doesn't mean I will get back to normal life, no. If I don't have it I will be spending that month doing a combination of Gerson therapy, homeopathic, and spiritual 'medicine' to kill off any remaining cancer cells. Giving my body a complete clear out by eating highly nutritional foods and continuing to develop myself spiritually to be a more balanced person. I can hardly believe I'm being so frank about it here since many people will be thinking I'm stupid for taking the risk...again. However, I have been and am going on a life changing journey that, unless you've been through this, you couldn't understand. And even people that have gone through something like this maybe would not understand since the journey is different for everyone. Cancer changes you. I believe it has taught me some very serious lessons and taken me on a new direction in life. I am not the same person I was and in a way I am pleased that this has happened. No, I'm not happy with all the injections, treatments, pain, and mental anguish; but I am happy with who I've become because of it.
I have a lot of thinking to do this weekend. I'm glad the sun is shining.
"The chemotherapy couldn't have gone any better".
There were no signs of tumours anywhere. So what does this mean? Well, they still want to go ahead with stem cell therapy to make sure that any remaing cells, too small to be picked up by CT, are killed off. The statistics show that this then gives you a 50/50 chance of not developing cancer again. Along with associated future problems of the BEAM chemo that they give you just before returning the stem cells to you. These include heart, lung, bone, liver, kidney etc. problems. None of these are life threatening problems and there is only a small risk of developing them, but the risk is there.
So, not really sure what to do with this one. I am now leaning toward not having the SCT. But that doesn't mean I will get back to normal life, no. If I don't have it I will be spending that month doing a combination of Gerson therapy, homeopathic, and spiritual 'medicine' to kill off any remaining cancer cells. Giving my body a complete clear out by eating highly nutritional foods and continuing to develop myself spiritually to be a more balanced person. I can hardly believe I'm being so frank about it here since many people will be thinking I'm stupid for taking the risk...again. However, I have been and am going on a life changing journey that, unless you've been through this, you couldn't understand. And even people that have gone through something like this maybe would not understand since the journey is different for everyone. Cancer changes you. I believe it has taught me some very serious lessons and taken me on a new direction in life. I am not the same person I was and in a way I am pleased that this has happened. No, I'm not happy with all the injections, treatments, pain, and mental anguish; but I am happy with who I've become because of it.
I have a lot of thinking to do this weekend. I'm glad the sun is shining.
Thursday, June 08, 2006
rapidrise is the way forward
As it's such a sunny day I decided to go out on my bike; the first time in at least 6 months. So I got the bike out of the walkin wardrobe/shed and dusted it off, pumped up the tires and made my way up to the Chevin. I had a great time. If anyone ever said that you never forget how to ride a bike then they were wrong. My skills were somewhat lacking. Rocks that I would have sailed over in the past were quite a struggle for me this time around. I'm sure it will come back fairly quickly though.
The wind blowing through my hair* felt amazing. I'm not going to leave it that long again!
*When I say hair I mean through the vents of my helmet onto my sweaty bald head.
The wind blowing through my hair* felt amazing. I'm not going to leave it that long again!
*When I say hair I mean through the vents of my helmet onto my sweaty bald head.
Is that a laboratory in your pocket or are you just pleased to see me?
Early Monday morning I woke, sat up in bed and read for a while. At five past seven it dawned on me that I needed to be at the hospital for 7:30! A mad rush and we made it for eight. Not a problem it seemed; In fact I didn't get seen until 8:30. Along came a doctor and I was asked to remove my trousers, and then my boxer shorts. My privates were then covered witha towel and the doctor went to work. A bit of pain from a local anastheatic followed by a small incision and a pipe, not all that dfifferent froma Hickman line, was inserted about 7cm to left of my tackle and sewn down. Not as bad as I had thought it would be but certainly not good.
A taxi to Seacroft hospital where I was promptly supplied with an egg sandwich and cup of coffee, along with a constant supply of biscuits and chocolate bars whilst I waited and waited and waited for my blood test results. All was fine so i was hooked up to the, rather DIY looking, machine that would seperate my stem cells from the rest of my blood. A nurse sits there with you for the full four hours as they constantly have to monitor what is happening and make slight adjustments here and there to make sure that the maximum number of cells are being extracted. A TV and video was brought over and I watched Cool Runnings. The time actually went fairly quickly.
A taxi back to St. James' and more waiting for the results. When they finally came in I was told there weren't enough (a count of 2.4 and they needed a minimum 3) so I would have to stay in over night. Despite my protesting (and a lot of protesting) they convinced my to stay in over night. I wanted to go home and come back in the morning but apparently this pipe could start bleeding and as it is in a major vein there mould be a A LOT of blood.
The next day same again but this time it took ages to get the results back, and even though it was 99.9% likely that I would have enough cells this time they wouldn't take the pipe out until we got confirmation. At about 5pm we did get the results. 2.7, what a surprise, NOT! so totalled together I have a 5.1 (and minimum 3 needed). So off we go to work removing the line from my groin. A stitch here, a stitch there, and then the doctor puls out the pipe. And pulls, and pulls, this thing is HUGE! The amount of pipe that was in me was unbelievable, it was a good 10cm long and half a centimeter wide! No wonder they didn't let me home, I would have bled to death. Finally I could go home and what was scheduled to be one day turned into two full days with a night in hospital.
Some things I discovered on this little trip:
The St. James' hospital canteen is absolutely diabolical. There is no excuse for food of such a low grade. I'm sure many patients would like a nice place to eat when friends and family come to visit, it would be uplifting to feel like you'd gone out, especially if you are spending a long time in hospital.
Give blood, there service is excellent and they really look after you. I'm trying to convince my girlfriend to become a donor but, like many, is scared of needles. The pain from giving blood is like being nipped on the arm so get over it and do some good!
Become a bone marrow donor. It would mean being hooked up tot his machine for four hours, but the line wouldn't be required as they'd just hook your arms up. I couldn't do that because the veins in my arm are so knackered from chemotherapy anf the flow wouldn't be good enough.
And finally, something I've observed MANY times before. The doctors and nurses drip feed you selected information! I didn't know there was a posibility I would have to stay in over night. I didn't even bring my pyjamas. I was very angry about it. They just assume you will know, or that you don't have any plans. Here's some news for you, my life doesn't revolve around cancer, I also do other things, and therefore I need to know in great detail when treatments and appointments will affect my life.
A taxi to Seacroft hospital where I was promptly supplied with an egg sandwich and cup of coffee, along with a constant supply of biscuits and chocolate bars whilst I waited and waited and waited for my blood test results. All was fine so i was hooked up to the, rather DIY looking, machine that would seperate my stem cells from the rest of my blood. A nurse sits there with you for the full four hours as they constantly have to monitor what is happening and make slight adjustments here and there to make sure that the maximum number of cells are being extracted. A TV and video was brought over and I watched Cool Runnings. The time actually went fairly quickly.
A taxi back to St. James' and more waiting for the results. When they finally came in I was told there weren't enough (a count of 2.4 and they needed a minimum 3) so I would have to stay in over night. Despite my protesting (and a lot of protesting) they convinced my to stay in over night. I wanted to go home and come back in the morning but apparently this pipe could start bleeding and as it is in a major vein there mould be a A LOT of blood.
The next day same again but this time it took ages to get the results back, and even though it was 99.9% likely that I would have enough cells this time they wouldn't take the pipe out until we got confirmation. At about 5pm we did get the results. 2.7, what a surprise, NOT! so totalled together I have a 5.1 (and minimum 3 needed). So off we go to work removing the line from my groin. A stitch here, a stitch there, and then the doctor puls out the pipe. And pulls, and pulls, this thing is HUGE! The amount of pipe that was in me was unbelievable, it was a good 10cm long and half a centimeter wide! No wonder they didn't let me home, I would have bled to death. Finally I could go home and what was scheduled to be one day turned into two full days with a night in hospital.
Some things I discovered on this little trip:
The St. James' hospital canteen is absolutely diabolical. There is no excuse for food of such a low grade. I'm sure many patients would like a nice place to eat when friends and family come to visit, it would be uplifting to feel like you'd gone out, especially if you are spending a long time in hospital.
Give blood, there service is excellent and they really look after you. I'm trying to convince my girlfriend to become a donor but, like many, is scared of needles. The pain from giving blood is like being nipped on the arm so get over it and do some good!
Become a bone marrow donor. It would mean being hooked up tot his machine for four hours, but the line wouldn't be required as they'd just hook your arms up. I couldn't do that because the veins in my arm are so knackered from chemotherapy anf the flow wouldn't be good enough.
And finally, something I've observed MANY times before. The doctors and nurses drip feed you selected information! I didn't know there was a posibility I would have to stay in over night. I didn't even bring my pyjamas. I was very angry about it. They just assume you will know, or that you don't have any plans. Here's some news for you, my life doesn't revolve around cancer, I also do other things, and therefore I need to know in great detail when treatments and appointments will affect my life.
Saturday, June 03, 2006
ah shutupayaface
Well, after yesterday's little out burst I feel much better about things today. I went to the hospital to get some antibiotics for a little cough I have and spoke to some of the nurses for some stem cell transplant truth. I asked them directly if I'd be able to navigate myself to the toilet even at the lowest of points. It seems I will.
I did receive this information in an email yesterday from my oncology nurse though; 'The stay in hospital is usually 4 weeks for the stem cell transplant and usually it takes approximately 3 - 6 months to recover completely and have your energy levels restored.'
This is a normal person though. I am not normal and no chemo has ever held me back for long. I will be back on track in no time. Watch this space.
I did receive this information in an email yesterday from my oncology nurse though; 'The stay in hospital is usually 4 weeks for the stem cell transplant and usually it takes approximately 3 - 6 months to recover completely and have your energy levels restored.'
This is a normal person though. I am not normal and no chemo has ever held me back for long. I will be back on track in no time. Watch this space.
Friday, June 02, 2006
prelude to a harvest
Monday will be a spectacular day spent having a stem cell harvest. This consists of the following:
Arrive at St. James' at 7:30 am to be seen by a doctor and have a pipe inserted into an artery near my groin. I then hang around for hospital transport to take me to Seacroft where they do the Harvest (provided my blood count is high enough). If they have enough stem cells I go back to Jimmy's for the pipe removing. If not I get to stay in hospital another night so they can do it all again on Tuesday.
I will be 27 years old on Monday the 5th.
This is going to be a shit day, but this is the point; when I was first told '...and then we'll do a stem cell harvest...', I ask, 'how long does that take?', 'oh, about 4 hours'.
Why don't they just tell the truth? Yes the actual procedure takes 4 hours but I'm going to be there ALL day. They should just say that. It makes me wonder what other information they trickle feed to me. The stem cell transplant, with a three and half week hospital visit, will undoubtedly be a lot worse than they have let on. Not in terms of feeling sick but things like having to measure how much you piss (I had to do that previously and I hate it), and I've heard, not sure so don't quote me, that I'll be so weak that I have piss and shit in those special receptacles. It's degrading.
Just doing a Google search on 'stem cell tranplant' brings up the following nuggets (from cancerbackup.org.uk):
'This intensive treatment will completely destroy all your normal bone marrow' -mmm, nice. Sounds like a good way to help someone. To help you we are going to take you to within an inch of your life and then let/hope you recover.
This may sound so very negative but I am pissed off right now. I actually feel very positive that I am learning all I need from this cancer experience. I am really happy and looking forward to the future as well as fully enjoying (most of) now. Plus I just pianted the bedroom and it's much better, a nice healing sky blue colour.
Arrive at St. James' at 7:30 am to be seen by a doctor and have a pipe inserted into an artery near my groin. I then hang around for hospital transport to take me to Seacroft where they do the Harvest (provided my blood count is high enough). If they have enough stem cells I go back to Jimmy's for the pipe removing. If not I get to stay in hospital another night so they can do it all again on Tuesday.
I will be 27 years old on Monday the 5th.
This is going to be a shit day, but this is the point; when I was first told '...and then we'll do a stem cell harvest...', I ask, 'how long does that take?', 'oh, about 4 hours'.
Why don't they just tell the truth? Yes the actual procedure takes 4 hours but I'm going to be there ALL day. They should just say that. It makes me wonder what other information they trickle feed to me. The stem cell transplant, with a three and half week hospital visit, will undoubtedly be a lot worse than they have let on. Not in terms of feeling sick but things like having to measure how much you piss (I had to do that previously and I hate it), and I've heard, not sure so don't quote me, that I'll be so weak that I have piss and shit in those special receptacles. It's degrading.
Just doing a Google search on 'stem cell tranplant' brings up the following nuggets (from cancerbackup.org.uk):
'This intensive treatment will completely destroy all your normal bone marrow' -mmm, nice. Sounds like a good way to help someone. To help you we are going to take you to within an inch of your life and then let/hope you recover.
This may sound so very negative but I am pissed off right now. I actually feel very positive that I am learning all I need from this cancer experience. I am really happy and looking forward to the future as well as fully enjoying (most of) now. Plus I just pianted the bedroom and it's much better, a nice healing sky blue colour.
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