Yesterday was a 'red letter' day.....another long letter from Lydia (My youngest Granddaughter)aged 13. One day I am determined to publish her letters in a book and call it 'Letters From Lydia'. Much news is passed on....this letter deals again with the guineapig situation and how 2 pet guineapigs were (unknowingly) pregnant when given to Lydia by a friend. So far a 3 month old guineapig has had 5 babies. One has died which was most traumatic! Now the other guineapig is about to give birth and the question is......
Who Is the Father?????
Lydia at first thought it must be the father of these 2 guineapigs, but now is sure it is the brother. Such goings on and I haven't met any of the gps yet. Together with long newsy letter is the 2nd part of the cartoon drawings detailing the story of the guineapigs. Lydia is an excellent cartoonist and I'm sure one day could have a career drawing if she would like to. She is also planning a 12 mile cycle ride for Children in Need (UK) and needs sponsors. Of course I am absolutely sure I have no readers out in the ether, but I am sure you will like to hear of her progress as she gets into training.
Lydia, if ever you read this let me say that your letters are the very best. I have told you this often. When a letter arrives we sit down with tea and biscuits and have time with Lydia (its the next best thing to being with you) and you know how very much we love you. Now I have to plan my reply (with love and hugs, Grandma).
Friday, 9 October 2009
Saturday, 26 September 2009
BLOOD TRANSFUSIONS
Yesterday I received another 2 units of blood. It took about 6 hours including a saline flush to infuse. This is not the first, or even 2nd blood transfusion I have had and I must say that although I will never meet the donors of the blood, I would like to say a heartfelt thankyou. Thankyou is a simple word and can never send out the message of 'giving thanks' as I would like to send it, but this is a personal thankyou from Soapy. Because you took the time to donate, today I feel better, I feel a little stronger. I also have a rosy flush in my cheeks instead of the palor which marks me as a leukaemia patient. This is good for my family too to see me looking better. This in turn makes them feel happier. So Mr, Miss, Mrs, Ms Donor, I was thinking of you while your blood was infused in me and wishing you well. Bless you all.
RITUXIMAB
I had my Rituximab over two days (although my white cell count had only gone down to 80,000) with no problems which was excellent. The day after the 2nd infusion I felt much more like my old self.
Saturday, 19 September 2009
24 August. The AIHA is back with a vengence. Because I presented with a white cell count of 220,000 (should be about 10,000) I was admitted that day for chemo as an in-patient. The last time I had this treatment it ended in Septacaemia which made me very ill. This was a factor in deciding to halve the dose of FC (treatment) for the time being and when the white cell count dropped, to add Rituximab (another type of chemo). I had to have 3 bags of blood transfused before they could start which was a problem in itself. Any transfusion I have has to be irradiated and the blood bank in Bristol was snowed under. It took over 24 hours to arrive with my doctor telling them to get on and 'blue light' it up the motorway. Anyway, the new blood stopped the symptoms of the AIHA and had I no problem with the chemo at 50% dose.
They spoiled me rotten in the hospital, we had lots of giggles, including one about my doses of Sennacot and perhaps a sunami in the loo in my room....... Another was that my potassium was down so if I agreed to eat at least 2 bananas a day, then they would cut a dose of the awful Sando stuff (like 2 tablets of sterident for false teeth in water)......I was never sure if I had ordered my bananas (chemobrain) so at one stage my room looked like a market stall! After 8 days they let me out for good behaviour.
I am back on the steroids (oh joy) and my surgery has supplied me with a blood pricker as my glucose level is higher than they would like.
On Wednesay 9th Sept I learned that the half dose of FC chemo didn't work at all. We were supposed to wait about 4-6 weeks before starting again, but agreed the white cell count is too high (177,000) and best to go ahead with more chemo asap. If we could get the count down, then we can hit on the head with Rituximab). Well, that was last Wednesday.
Early Thursday last week (12.30am) I woke up with chest pain radiating up to my jaw/teeth. I can't believe I just left it, but I did, my reasoning being that I didn't want to go back into hospital - how daft is that? My husband was in the den and I didn't tell him, I just waited for it to pass (what a complete idiot I am) and then funnily enough I went back to sleep. I told him the next morning but the pain was gone and so I carried on as usual. By lunchtime I could feel tightness building so my husband drove me to my GP. No doctors on duty as it was lunchtime! However, the practise nurse took control and told me off (nicely), did an ecg and phoned 999 I was taken to hospital by ambulance where I spent the night in Medical Assessment Unit. This is not my usual hospital as we had to go to the nearest Accident and Emergency dept to where I live. Because of my previous angina I was really worried, especially being due to start chemo again on Monday, but I was discharged late Friday afternoon. They did cardiac enzyme tests, chest xray etc but it is not believed to be a cardiac problem, just treatment, CLL, AIHA etc etc.
By Monday 14th SeptemberI was a bit of a mess, lifeless, exhausted and shaking, I can't begin to explain how I felt. I went to my usual hospital to start the full dose of chemo. I have chosen to have this by the iv method and it went well, so far anti-sickness pills are working wonders and I haven't been to see the Big White Chief (but I won't crow too soon). When I explained how ill I have been feeling, my doctor told me that my leukaemia is 'very active'. Can you just imagine all those little cells being very active? Doing what? running marathons??? I finished the last lot of chemo this morning for this cycle. We've been going in every day which is very tiring for both of us. At least I get to lay on the bed and play the lady. We have these great electronic beds, but yesterday I pushed the wrong buttons and the bed ended up in a V shape with my bum down in the V. Actually it was quite comfy until a nurse rescued me and got the bed rebooted. My lovely man has been coming and going and he's totally worn out. I'm not sure how I would react if the tables were reversed. Strangely enough you might think I would get a little depressed here, but | am feeling confident (must be the cyclizine which I believe is a choice of drug for some addicts).
If my WBC is down to 22,000 on Monday 21st September I am to begin Rituximab. Wish me luck.
They spoiled me rotten in the hospital, we had lots of giggles, including one about my doses of Sennacot and perhaps a sunami in the loo in my room....... Another was that my potassium was down so if I agreed to eat at least 2 bananas a day, then they would cut a dose of the awful Sando stuff (like 2 tablets of sterident for false teeth in water)......I was never sure if I had ordered my bananas (chemobrain) so at one stage my room looked like a market stall! After 8 days they let me out for good behaviour.
I am back on the steroids (oh joy) and my surgery has supplied me with a blood pricker as my glucose level is higher than they would like.
On Wednesay 9th Sept I learned that the half dose of FC chemo didn't work at all. We were supposed to wait about 4-6 weeks before starting again, but agreed the white cell count is too high (177,000) and best to go ahead with more chemo asap. If we could get the count down, then we can hit on the head with Rituximab). Well, that was last Wednesday.
Early Thursday last week (12.30am) I woke up with chest pain radiating up to my jaw/teeth. I can't believe I just left it, but I did, my reasoning being that I didn't want to go back into hospital - how daft is that? My husband was in the den and I didn't tell him, I just waited for it to pass (what a complete idiot I am) and then funnily enough I went back to sleep. I told him the next morning but the pain was gone and so I carried on as usual. By lunchtime I could feel tightness building so my husband drove me to my GP. No doctors on duty as it was lunchtime! However, the practise nurse took control and told me off (nicely), did an ecg and phoned 999 I was taken to hospital by ambulance where I spent the night in Medical Assessment Unit. This is not my usual hospital as we had to go to the nearest Accident and Emergency dept to where I live. Because of my previous angina I was really worried, especially being due to start chemo again on Monday, but I was discharged late Friday afternoon. They did cardiac enzyme tests, chest xray etc but it is not believed to be a cardiac problem, just treatment, CLL, AIHA etc etc.
By Monday 14th SeptemberI was a bit of a mess, lifeless, exhausted and shaking, I can't begin to explain how I felt. I went to my usual hospital to start the full dose of chemo. I have chosen to have this by the iv method and it went well, so far anti-sickness pills are working wonders and I haven't been to see the Big White Chief (but I won't crow too soon). When I explained how ill I have been feeling, my doctor told me that my leukaemia is 'very active'. Can you just imagine all those little cells being very active? Doing what? running marathons??? I finished the last lot of chemo this morning for this cycle. We've been going in every day which is very tiring for both of us. At least I get to lay on the bed and play the lady. We have these great electronic beds, but yesterday I pushed the wrong buttons and the bed ended up in a V shape with my bum down in the V. Actually it was quite comfy until a nurse rescued me and got the bed rebooted. My lovely man has been coming and going and he's totally worn out. I'm not sure how I would react if the tables were reversed. Strangely enough you might think I would get a little depressed here, but | am feeling confident (must be the cyclizine which I believe is a choice of drug for some addicts).
If my WBC is down to 22,000 on Monday 21st September I am to begin Rituximab. Wish me luck.
Sunday, 6 September 2009
I AM
In no particular order,
1. I am a wife who loves and is loved
2. I am a loving Grandma to 2 beautiful granddaughters
3. I am a good mother
4. I am a sister
5. I am a keeper of secrets
6. I am a closet singer
7. I am a veteran in CLL and it’s treatments
8. I am a survivor
9. I am an OAP with a Pension, hooray
10. I am blessed
11. I am someone who prays
12. I am a winner of holidays, prizes and premium bonds
13. I am a believer in angels
14. I am a good friend
15. I am excellent at hugging and do it wherever and whenever I can
16. I am a writer who expresses herself better on paper than using the spoken word
17. I am like an iceberg, most of me is hidden below the surface
18. I am like a flower who blossoms when I am loved
19. I am a daughter with no parents
20. I am a still the child who was ‘born without shame or blame and truly faultless’ (Bernie Seigel), although I may have gathered a few faults along the way!
1. I am a wife who loves and is loved
2. I am a loving Grandma to 2 beautiful granddaughters
3. I am a good mother
4. I am a sister
5. I am a keeper of secrets
6. I am a closet singer
7. I am a veteran in CLL and it’s treatments
8. I am a survivor
9. I am an OAP with a Pension, hooray
10. I am blessed
11. I am someone who prays
12. I am a winner of holidays, prizes and premium bonds
13. I am a believer in angels
14. I am a good friend
15. I am excellent at hugging and do it wherever and whenever I can
16. I am a writer who expresses herself better on paper than using the spoken word
17. I am like an iceberg, most of me is hidden below the surface
18. I am like a flower who blossoms when I am loved
19. I am a daughter with no parents
20. I am a still the child who was ‘born without shame or blame and truly faultless’ (Bernie Seigel), although I may have gathered a few faults along the way!
Saturday, 5 September 2009
Another Hospital Stay
A quick update….. I saw my doctor in August and treatment (FC) was planned to start 25th August. I hadn’t been feeling well for a couple of weeks and the blood tests pre-chemo on 25th showed my old friend the AIHA is back with a vengence. Because I presented with a WBC of 220,000 I was admitted that day for chemo as an in-patient. I have had FC twice in the past, the last time over 2 months which ended in Septacaemia which made me very ill. This was a factor in deciding to halve the dose of FC for the time being and when the WBC drops, to add Rituximab. I had 3 bags of blood which stopped the symptoms of the AIHA and had no problem with the chemo at 50%level. However, I am anaemic (although now upto 10 which is good). My WBC is going completely haywire and from 1st Sept to today, 4th Sept, has jumped from 121,000 to 177,000 which is an average climb of 14,000 a day!! I have another appointment next Wednesday and again the following Monday. After the Septacaemia last time we switched to Campath and I think this may be worth thinking about.
Having said all that, I am feeling better than for some time. I have decided to just stop worrying about it all (from poem Desiderata) "and whether or not it is clear to you, no doubt the universe is unfolding as it should". I had 8 days in the hospital with so much TLC and laughter. My medical team are the very best you can have. This is not a political post but I do have to say that my experience of the NHS in the Uk is of the very best, despite the bad press it often gets.
Having said all that, I am feeling better than for some time. I have decided to just stop worrying about it all (from poem Desiderata) "and whether or not it is clear to you, no doubt the universe is unfolding as it should". I had 8 days in the hospital with so much TLC and laughter. My medical team are the very best you can have. This is not a political post but I do have to say that my experience of the NHS in the Uk is of the very best, despite the bad press it often gets.
Friday, 21 August 2009
Starting Treatment Again
In less than 2 weeks I have lost myself somewhere. In less than 2 weeks I suddenly have no energy, rapid heart beat, feeling of concrete in my arms and legs and everything is such an effort. Even small things leave me breathless. The AIHA is taking me over again.
On Monday I start treatment. It was to have been Campath, but it has now been decided to try FC again with Rituximab later. However, this morning my doctor phoned to say that my Creatinine test is low and although we are still going ahead with the treatment it will be a half dose. I am relieved as the last time FC was very toxic for me.
So the question is, how do I mobilise myself? Well meaning friends and family tell me I have done this before, and so I have. Three times. Three times with two remissions which have been good. But I have been warned to expect hospitalisation with infections and that this will be a very rough ride. My husband is very upset and we are both frightened. However, my hospital is excellent and the staff don't change much. I am part of the furniture there and sometimes I like to think I am a 'favourite patient'. The staff are so kind and caring.
On Monday I start treatment. It was to have been Campath, but it has now been decided to try FC again with Rituximab later. However, this morning my doctor phoned to say that my Creatinine test is low and although we are still going ahead with the treatment it will be a half dose. I am relieved as the last time FC was very toxic for me.
So the question is, how do I mobilise myself? Well meaning friends and family tell me I have done this before, and so I have. Three times. Three times with two remissions which have been good. But I have been warned to expect hospitalisation with infections and that this will be a very rough ride. My husband is very upset and we are both frightened. However, my hospital is excellent and the staff don't change much. I am part of the furniture there and sometimes I like to think I am a 'favourite patient'. The staff are so kind and caring.
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