Clive James, the Australian personality has CLL.
His wife is quoted in the Daily Mail, 'He is suffering from CLL - Chronic Lymphocytic Leukaemia - which if you must have, the condition is the kind you want because they can monitor it.’
Clive himself is quoted as saying, 'I got hauled in for kidney failure.
I was immediately diagnosed for everything else as well, including several lung diseases and a version of leukaemia that is supposed to develop slowly but in my case couldn’t wait to get started, mainly in my lungs'.
What a contradiction, 'the kind you want?' No cancer is 'the kind you want' and everytime a celebrity or doctor is quoted using words such as these about Chronic Lymphocytic Leukaemia or any other cancer, it gives a false, benign impression of the disease. Of course it is doctors who tell the patients this when they are diagnosed. Then, as in Clive's case (and mine), when all hell breaks loose we remember what the doctor told us and wonder why we weren't told the truth in the beginning.....many cases of CLL can be, and are, much more agressive and many will fall between.
There is much on-line information about CLL and later I will post web addresses of such sites that are so helpful.
To Clive I say 'may you be well'.
Thursday, 5 May 2011
Monday, 14 March 2011
Japan
From the stats I know that someone in Japan reads my blog. I hope that you are not in the tsumami/earthquake zone and that you know that the world is thinking of you all. Please post a comment so I know you are well.
Soapy.
5 June 2011
Although we don't seem to get any updates in the UK about what is happening in Japan and how you are all doing in the wake of what happened, I do not forget you and think of you all often.
Soapy.
5 June 2011
Although we don't seem to get any updates in the UK about what is happening in Japan and how you are all doing in the wake of what happened, I do not forget you and think of you all often.
Sunday, 13 February 2011
PREDNISOLONE WITHDRAWAL
I have been on Prednisolone for over 2 years now for AIHA. Starting at doses upto 60mg a day and decreasing, each time I get to about 10 mg a day I suffer terrible heartburn with pain radiating into jaw/teeth. When I get the dose to 10mg or lower the AIHA has returned. I am now on my 5th withdrawal and again at 10/5 mg on alternating days my heartburn is scaring me. In 2009 it was so painful I ended up overnight in hospital as a suspected heart attack (I have a history of angioplasty for angina).
I currently am also taking Azathioprine (immune suppressant), Penicillin V and Septrim (both antibiotics), Aciclovir (anti viral), Omeprazole (for tummy), folic acid.
I had a splenectomy last July for the AIHA and whilst in hospital again in October with a chest infection and breathing problems it was discovered that I was hemolysing again. Prednisolone was restarted at 60 mg a day together with Azathioprine which is hoped to take over from the Prednisolone. As well as the heartburn I have the shakes, general weakness and palpitations (which is to be expected after so long on this drug). I am a complete addict where this drug is concerned and life seems permanently one round of withdrawal symptoms. I am also recently diagnosed with a 'bit' of emphysema in the top of both lungs and damage to both lower lungs from past pneumonias/chest infections and 'some degree of pulmonary collapse' from the splenectomy.
Each withdrawal takes longer and this time it has been extremely slow and difficult. As an 11+ year cller I appreciate that I am an 'old hand' at cll and its various twists and turns, however, any advice would be appreciated.
I currently am also taking Azathioprine (immune suppressant), Penicillin V and Septrim (both antibiotics), Aciclovir (anti viral), Omeprazole (for tummy), folic acid.
I had a splenectomy last July for the AIHA and whilst in hospital again in October with a chest infection and breathing problems it was discovered that I was hemolysing again. Prednisolone was restarted at 60 mg a day together with Azathioprine which is hoped to take over from the Prednisolone. As well as the heartburn I have the shakes, general weakness and palpitations (which is to be expected after so long on this drug). I am a complete addict where this drug is concerned and life seems permanently one round of withdrawal symptoms. I am also recently diagnosed with a 'bit' of emphysema in the top of both lungs and damage to both lower lungs from past pneumonias/chest infections and 'some degree of pulmonary collapse' from the splenectomy.
Each withdrawal takes longer and this time it has been extremely slow and difficult. As an 11+ year cller I appreciate that I am an 'old hand' at cll and its various twists and turns, however, any advice would be appreciated.
Thursday, 27 January 2011
ANOTHER DIAGNOSIS
After my last stay in hospital and visit to Wales, I still had a lot of trouble with my breathing. Lung function tests were done and happily my breathing is now better. However, yesterday I saw a lung specialist and his findings (taking into account CT scan of lungs and some more lung function tests) are
1) a bit of Emphysema in the top of both lungs causing loss of lung tissue 2) the bottom of both lungs have scarring from previous infections and possibly the splenectomy.
3) This has reduced my lung capacity by 25% over all.
4) No significant narrowing of airways and not Bronciectasis
Now this seems a big deal to me. Emphysema is a very scary word and under the heading of COPD. His advice was try not to get any more chest infections (3 pneumonias so far with my CLL + the chest infection last October)- all very serious and requiring hospital in-patient treatment.
Meanwhile I am still strugging with Prednisolone withdrawal. I could do with some really good news.
1) a bit of Emphysema in the top of both lungs causing loss of lung tissue 2) the bottom of both lungs have scarring from previous infections and possibly the splenectomy.
3) This has reduced my lung capacity by 25% over all.
4) No significant narrowing of airways and not Bronciectasis
Now this seems a big deal to me. Emphysema is a very scary word and under the heading of COPD. His advice was try not to get any more chest infections (3 pneumonias so far with my CLL + the chest infection last October)- all very serious and requiring hospital in-patient treatment.
Meanwhile I am still strugging with Prednisolone withdrawal. I could do with some really good news.
Thursday, 16 December 2010
THE BIRTHDAY GIRL IS 63 YEARS OLD
Time for some nice news. The birthday girl was 63 yesterday!! Good grief, how did I get here? Inside the teenager still lives, but the outside is somewhat more lived in. However, if I look in the mirror with no glasses which softens the edges, I look younger than 63.
We had a great day with lots of cards and presents and telephone calls with birthday wishes. Then we took ourselves off to a lovely country pub for lunch. For those who don't live in the UK, our pubs are great places. We use Alastair Sawday's pub guide and are usually not disappointed with the food. We finished up with a little Christmas shopping and back to our warm home which is already decorated early for Christmas.
As I have been feeling really unwell these last few weeks, I appreciated the day out and the drive in the country. It was was great birthday.
Snow is forecast in the next few days. Will it be a white Christmas?
We had a great day with lots of cards and presents and telephone calls with birthday wishes. Then we took ourselves off to a lovely country pub for lunch. For those who don't live in the UK, our pubs are great places. We use Alastair Sawday's pub guide and are usually not disappointed with the food. We finished up with a little Christmas shopping and back to our warm home which is already decorated early for Christmas.
As I have been feeling really unwell these last few weeks, I appreciated the day out and the drive in the country. It was was great birthday.
Snow is forecast in the next few days. Will it be a white Christmas?
GLAUCOMA?
I visited the Glaucoma clinic this week for the results of my 2nd lot of tests this year. This is not at my usual hospital.
My pressure levels in my eyes have dropped a little but there was some concern that my eyes are draining properly. I had thought I was dealing with a doctor, but later I understood that I was seeing an optomotrist. She put a kind of jewellers lens in my eyes (stuck to my eyeballs!) to look through and then said she needed the consultant to come and take a look. He was 'busy on the phone' for 45 minutes (while his clinic was also backing up) and so I was sent back outside to wait. He took a brief look, said things looked angry and red and not right and that his colleague would explain and then he disappeared! The optomotrist explained that if my eyes were not draining properly then the pressure on the eyeball could rise very quickly. This could not be treated with eye drops (as I understood Glaucoma was treated) but would need laser surgery. However, she felt I would be ok for another 6 months. How can they tell???
My pressure levels in my eyes have dropped a little but there was some concern that my eyes are draining properly. I had thought I was dealing with a doctor, but later I understood that I was seeing an optomotrist. She put a kind of jewellers lens in my eyes (stuck to my eyeballs!) to look through and then said she needed the consultant to come and take a look. He was 'busy on the phone' for 45 minutes (while his clinic was also backing up) and so I was sent back outside to wait. He took a brief look, said things looked angry and red and not right and that his colleague would explain and then he disappeared! The optomotrist explained that if my eyes were not draining properly then the pressure on the eyeball could rise very quickly. This could not be treated with eye drops (as I understood Glaucoma was treated) but would need laser surgery. However, she felt I would be ok for another 6 months. How can they tell???
Friday, 3 December 2010
LOW SPIRITS
Within a week of leaving hospital we spent a few days with family in North Wales. I was still coughing and feeling somewhat 'fragile' but in good spirits and, as I knew we would, we had a brilliant time. So much laughing....I am so fortunate to have such a lovely family.
However, living as we do on ground floor level, and given that my daughter and family live in a house spread over 4 floors, it is not surprising that the stairs gave me some real problems. The house is rented and has 4 bathrooms and a shower room!!! That is 5 loos/toilets/whatever you wish to call them - but not one on the ground floor....every trip means up a floor or down a floor!!! Who goes down must go up and so forth. After a couple of days I needed some time to get up the stairs with a couple of stops and then a sit on the bed before ..... and coughing so badly I just couldn't breath in between coughing spasms - which makes life pretty difficult and scary. The day after we returned home I presented myself at the hospital. COPD was mentioned, as was previous smoking damage(I gave up over 30 years ago!). Those who follow my blog may know that Bronchiectasis (a form of COPD) is a real fear of mine as my mother suffered very badly from this with her CLL). It also appears from arterial blood tests that I am 'over-breathing' and this is not helping. It is not panic because I can't breathe, it's just I can't suck the air in enough to get my breath. I have lung function tests in a couple of days. I am also being seen on a weekly basis for my CLL by a different doctor as mine is away. This doctor believes the coughing could be viral. Meanwhile my pill collection is growing and I will soon need a shopping trolley if I want to go away again. However, this begs the question 'will I be able to go and see my family again because of my problem with the stairs?' It is about a 7 hour drive each way and with my grandchildren in school/college and studying for their exams and my daughter and son-in-law working, it is not practical for them to come this way. I admit my 'pity party' has lasted 3 days now. The future doesn't look fair to middling - it just doesn't look much at all at the moment. I am on steroid withdrawal (YET AGAIN) with no guarantee that the new drug is working and that the AIHA won't blaze into action (probably around Christmas if my body follows its general pattern). Anyone have any shafts of light they can send in my direction?
However, living as we do on ground floor level, and given that my daughter and family live in a house spread over 4 floors, it is not surprising that the stairs gave me some real problems. The house is rented and has 4 bathrooms and a shower room!!! That is 5 loos/toilets/whatever you wish to call them - but not one on the ground floor....every trip means up a floor or down a floor!!! Who goes down must go up and so forth. After a couple of days I needed some time to get up the stairs with a couple of stops and then a sit on the bed before ..... and coughing so badly I just couldn't breath in between coughing spasms - which makes life pretty difficult and scary. The day after we returned home I presented myself at the hospital. COPD was mentioned, as was previous smoking damage(I gave up over 30 years ago!). Those who follow my blog may know that Bronchiectasis (a form of COPD) is a real fear of mine as my mother suffered very badly from this with her CLL). It also appears from arterial blood tests that I am 'over-breathing' and this is not helping. It is not panic because I can't breathe, it's just I can't suck the air in enough to get my breath. I have lung function tests in a couple of days. I am also being seen on a weekly basis for my CLL by a different doctor as mine is away. This doctor believes the coughing could be viral. Meanwhile my pill collection is growing and I will soon need a shopping trolley if I want to go away again. However, this begs the question 'will I be able to go and see my family again because of my problem with the stairs?' It is about a 7 hour drive each way and with my grandchildren in school/college and studying for their exams and my daughter and son-in-law working, it is not practical for them to come this way. I admit my 'pity party' has lasted 3 days now. The future doesn't look fair to middling - it just doesn't look much at all at the moment. I am on steroid withdrawal (YET AGAIN) with no guarantee that the new drug is working and that the AIHA won't blaze into action (probably around Christmas if my body follows its general pattern). Anyone have any shafts of light they can send in my direction?
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