Almost the end of July. This week found me back in CLL Clinic where my blood tests showed no response to the 2nd round of Chlorambucil. WBC up a little and HGB down a little on last month. My consultant decided to lengthen the next course of Chlorambucil to 14 days and so, here I am, on day 3 with 11 more to go. Coughing quite a bit in the evening and getting a bit breathless.
Not all bad though. We managed to get to see our daughter and granddaughters for a couple of days inbetween chemo rounds and spent a week with my sister in Wales. Lots of pub meals so no one had to cook!
Thursday, 28 July 2011
CLL - CONTINUING THE ROLLERCOASTER RIDE (2)
By the end of May I was hospitalised with cardiac problems. My heart was booming and seemed to me to be so slow. Everything was an effort. I was admitted to AAU. My stay there was not good. The SHO kept telling me there was nothing wrong. Note to all patients here...be sure to fight your corner. I fought mine and refused to go home. A senior doctor appeared and I was put on a heart monitor. He diagnosed Fast Atrial Fibrulation (going at the rate of a marathon) and Flutter and prescribed betablockers. The following day 2 more junior doctors appeared and suggested that blood was pooling in my heart chamber, it wasn't emptying properly. I was more at risk of stroke and Warfarin was recommended. Given my CLL prognosis and risk of hemorrhage I took the decision to refuse Warfarin but said I would start on Asprin instead. There was no followup in outpatients by the cardiac department. I believe that as I am reaching the end of my CLL journey, it was felt I wasn't worth following up. It was a very low point for me. However, the betablocker had stopped the booming in my chest.
There was a little response to the Chlorambucil and so a second round was started in June. My doc suggested I didn't expect anything from the treatment, then I wouldn't be disappointed. I was to slow right down.
July found me having a lot of angina attacks at rest. This is angina while trying to make a cup of tea or cleaning my teeth and even waking me up a night. My GP sent me to the rapid access chest pain clinic at my local hospital and I was admitted to the Cardiac Ward. Diagnosis? Left Ventricular Hypertrophy and Atrial Fibrillation, happily with no sign of heart failure. After another overnight stay I left with more heart pills and an appointment for a stress echocardiogram in August. The pills are working well and no more angina at the moment. However, I have to stop these pills 3 days before the echo and I admit that this frightens me.
There was a little response to the Chlorambucil and so a second round was started in June. My doc suggested I didn't expect anything from the treatment, then I wouldn't be disappointed. I was to slow right down.
July found me having a lot of angina attacks at rest. This is angina while trying to make a cup of tea or cleaning my teeth and even waking me up a night. My GP sent me to the rapid access chest pain clinic at my local hospital and I was admitted to the Cardiac Ward. Diagnosis? Left Ventricular Hypertrophy and Atrial Fibrillation, happily with no sign of heart failure. After another overnight stay I left with more heart pills and an appointment for a stress echocardiogram in August. The pills are working well and no more angina at the moment. However, I have to stop these pills 3 days before the echo and I admit that this frightens me.
CLL - CONTINUING THE ROLLER COASTER RIDE
At the beginning of March it seemed like I was heading for a remission. My counts were looking reasonable and my doctor suggested that 2011 might be a good year (the last 2 years being so hard). But by the middle of April the white cell count was well on the way up again (40,800). By May it had risen to 71,000 and I was starting to hemolyse again. I was told I am refractory to previous treatments and it was time to think about my future. We discussed hospice and end of life issues. I asked for and received a DNAR form (Do Not Attempt Rescusitation). It was decided that I would start a course of Chlorambucil + Prednisolone as a palliative measure. My doc suggested it was time to speak to my family about my poor prognosis. If there was no response to Chlorambucil then we would discontinue treatment.
Thursday, 5 May 2011
CLIVE JAMES AND CLL
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'.
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'.
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?
NO COMMENT
I have been reading through my posts and there are very few comments. Obviously no-one is reading me. Does anyone know how to reach a wider readership without going through a CLL channel as I am still trying to post incognito?
Sunday, 7 November 2010
FURTHER ALONG THE BENCH
So with my CLL I am moving 'further along the bench'.
After my splenectomy in July it was felt by the doctors that I was recovering well. Haemolysing had stopped and steriods were slowly tailed off. During this 'recovery time' I was still feeling unwell with pain in the splenecomy site and the worry this was causing me. Next I vomited badly followed a couple of days later with the winter flu injection. This led to a urine infection and a trip to the hospital, followed by a chest infection. Two weeks of oral antibiotics at home and I was still spiking fevers and coughing badly. My breathing was so bad it was frightening. I visited the hospital again and asked that I be admitted with iv antibiotics and as soon as my doctor saw how bad my breathing was he had me admitted immediately.
The in-patient stay had a tale or two to tell, but not now. I was coughing a lot, my breathing was very bad and my sats were low. So it was another chest infection and while I was in hospital I was quite anaemic(HGB 69). Three bags of blood, iv antibiotics and 9 days 'inside' I am back home with HBG up to 108. The bad news is that the splenectomy did not last more than a few weeks and I am hemolysing again. I am on a high dose of steroids for now and also taking Azathioprine (an immune system suppressant). It is hoped this will kick in within 6 weeks and I will be able to come off the steroids. My PLTs are now 611!!! This is FAR TOO high and in hospital I was on blood thinners. 611 surely is a stroke risk or worse? It scares me more than a little. The other hard thing is that my WBC has risen to 67.9 so maybe the CLL is back on the march? I have another appointment with my Haematologist tomorrow and will probably find out more then.
After my splenectomy in July it was felt by the doctors that I was recovering well. Haemolysing had stopped and steriods were slowly tailed off. During this 'recovery time' I was still feeling unwell with pain in the splenecomy site and the worry this was causing me. Next I vomited badly followed a couple of days later with the winter flu injection. This led to a urine infection and a trip to the hospital, followed by a chest infection. Two weeks of oral antibiotics at home and I was still spiking fevers and coughing badly. My breathing was so bad it was frightening. I visited the hospital again and asked that I be admitted with iv antibiotics and as soon as my doctor saw how bad my breathing was he had me admitted immediately.
The in-patient stay had a tale or two to tell, but not now. I was coughing a lot, my breathing was very bad and my sats were low. So it was another chest infection and while I was in hospital I was quite anaemic(HGB 69). Three bags of blood, iv antibiotics and 9 days 'inside' I am back home with HBG up to 108. The bad news is that the splenectomy did not last more than a few weeks and I am hemolysing again. I am on a high dose of steroids for now and also taking Azathioprine (an immune system suppressant). It is hoped this will kick in within 6 weeks and I will be able to come off the steroids. My PLTs are now 611!!! This is FAR TOO high and in hospital I was on blood thinners. 611 surely is a stroke risk or worse? It scares me more than a little. The other hard thing is that my WBC has risen to 67.9 so maybe the CLL is back on the march? I have another appointment with my Haematologist tomorrow and will probably find out more then.
Thursday, 5 August 2010
NHS GP SURGERY PRACTICE NURSES
Just here to blow off steam..... For the last few days....maybe even since the splenectomy 2 weeks ago, I feel like I've been kicked in the left kidney area. Yesterday after an hour journey in the car, with the kidney area supported on a folded blanket, it was somewhat uncomfortable by the time I got home. I have been eating paracetamol on a regular basis for 2 weeks. It helps a bit but not much. Today I decided to test my waterworks. It showed BLD-SNG ERY_HB 25+ hemolysed. Now I'm no nurse or doctor and maybe my kit has not been stored correctly and I don't know what +25 means but I know its a couple of stops up the scale from what it should be if the dipstick is correct. I phoned the hospital who 'advised me to go to the surgery, see a doctor or nurse pronto to get it checked professionally and maybe I would need some antibiotics for an infection. Get back to the hospital if necessary'. Brilliant, quick advice from a specialised cancer nurse who knows I wouldn't phone for advice without good reason. So I phoned my surgery....
No appointments today....that's good then....so I quietly stood my ground and got an appointment with the practice nurse who is allowed to issue prescriptions. She found no trace of anything and I explained about the pain. What I got was 'there's nothing in the sample'.....(so go home little lady and stop wasting my time, and what are you doing with your own test kit!!!) - nb. the hospital gave me a test kit during chemotherapy when I kept getting infections and I didn't want to keep visiting the surgery unnecessarily!). So with absolutely no sympathy whatsoever for the pain, and feeling like a hypochondriac and with no antibiotics, I left. I didn't feel like bothering the hospital again, although I know I will be in trouble on Monday for leaving it, but I haven't the heart. Back to my hot water bottle and paracetamol. I know the hemolysing is supposed to have stopped, but I feel it is back. I have the shakes and the radiating pain in my jaw which presents when it is back. My chest vibrations too. It could just be that I am coming off the steroids pretty quickly as well which doesn't help. I feel a big pity party coming on.
No appointments today....that's good then....so I quietly stood my ground and got an appointment with the practice nurse who is allowed to issue prescriptions. She found no trace of anything and I explained about the pain. What I got was 'there's nothing in the sample'.....(so go home little lady and stop wasting my time, and what are you doing with your own test kit!!!) - nb. the hospital gave me a test kit during chemotherapy when I kept getting infections and I didn't want to keep visiting the surgery unnecessarily!). So with absolutely no sympathy whatsoever for the pain, and feeling like a hypochondriac and with no antibiotics, I left. I didn't feel like bothering the hospital again, although I know I will be in trouble on Monday for leaving it, but I haven't the heart. Back to my hot water bottle and paracetamol. I know the hemolysing is supposed to have stopped, but I feel it is back. I have the shakes and the radiating pain in my jaw which presents when it is back. My chest vibrations too. It could just be that I am coming off the steroids pretty quickly as well which doesn't help. I feel a big pity party coming on.
Monday, 2 August 2010
From the Prophet by Kahlil Kibran - On Dying
'You would know the secret of death.
But how shall you find it unless you seek it in the heart of life?
The owl whose night-bound eyes are blind unto the day cannot unveil the mystery of light.
If you would indeed behold the spirit of death, open your heart wide unto the body of life.
For life and death are one, even as the river and the sea are one.
In the depth of your hopes and desires lies your silent knowledge of the beyond;
And like the seeds dreaming beneath the snow your heart dreams of spring.
Trust the dreams, for in them is hidden the gate to eternity.
Your fear of death is but the trembling of the shepherd when he stands before the king whose hand is to be laid upon him in honour.
Is the shepherd not joyful beneath his trembling, that he shall wear the mark of the king?
Yet is he not more mindful of his trembling?
For what is it to die but to stand naked in the wind and to melt into the sun?
And what is it to cease breathing, but to free the breath from its restless tides, that it may rise and expand and seek God unencumbered?
Only when you drink from the river of silence shall you indeed sing'.
But how shall you find it unless you seek it in the heart of life?
The owl whose night-bound eyes are blind unto the day cannot unveil the mystery of light.
If you would indeed behold the spirit of death, open your heart wide unto the body of life.
For life and death are one, even as the river and the sea are one.
In the depth of your hopes and desires lies your silent knowledge of the beyond;
And like the seeds dreaming beneath the snow your heart dreams of spring.
Trust the dreams, for in them is hidden the gate to eternity.
Your fear of death is but the trembling of the shepherd when he stands before the king whose hand is to be laid upon him in honour.
Is the shepherd not joyful beneath his trembling, that he shall wear the mark of the king?
Yet is he not more mindful of his trembling?
For what is it to die but to stand naked in the wind and to melt into the sun?
And what is it to cease breathing, but to free the breath from its restless tides, that it may rise and expand and seek God unencumbered?
Only when you drink from the river of silence shall you indeed sing'.
Friday, 30 July 2010
30 YEARS OF LOVE
July 31st 1980 - Mandy was away staying with my Mum for a week. I had started a new job that week and on the very first day I knew I had made a mistake and should a) never have left my old job and b) started the new. I was feeling down, so July 31st I popped into my old work premises in the evening. I was lucky in that I hadn't given in my security pass yet and was still able to use the social club (which, believe it or not, I had never used before as with a 12 year old to look after I was always at home in the evenings). Well, there was Neil sitting in the bar. I already knew him a little of course and so we got chatting. He invited me to go for a meal (little did I know then that he had just had some fish and chips and wasn't really hungry!). I knew he had a motorbike and so I suggested he drive my VW Beetle and we drove off to a Greek restaurant in Southampton. We had a great evening and on the way home he suggested we stop off so he could show me the house he had just bought and have coffee. He then suggested I could stay over while he slept on the settee!!! I declined. Knowing him now, I laugh - he never had any ulterior motives - not his style. So I drove myself home and was very pleased to note he'd left his motorbike gloves in my car and so I knew he would contact me again. He did and the rest is history. We married 15th February 1986 and so far have chalked up 30 years since that first evening. 30 years of being loved by Neil - how lucky am I? Today we are going to go out to lunch to celebrate.
Wednesday, 28 July 2010
COMING OUT
I am thinking of coming out of the closet and posting my blog on some CLL websites. Just thinking of it at the moment as this is still my private place. What do YOU think?
SISTERS, STEP SISTERS, HALF SISTERS, SISTERS IN LAW - THE SISTERHOOD
How lucky am I to have so many sisters (and a brother of course) but this post is about sisters. Altogether I count 6 of them. Now one speaks sometimes about her 'blood family' (son and grandchild) and from this I believe she doesn't feel as loved by me as my 'real' sisters. What codswallop! This sister, my eldest sister Edith, is a sister - no 'step' word, no 'half' sister, she is MY sister. So we have different mothers - we are still sisters. She was there for me from the time I was born. Always looked out for me and loved me more than my mother. That is a fact and she is so very loved. Yesterday I told her I had a need to see her soon. Since she moved away I have missed her. And another sister, Diana. Closer in age and another much loved sister. Who else is holding the fort looking after 6 guinea-pigs, 2 cats (complete with litter trays) and a tank of fish. Couple this with travelling through England and Wales to do look after this menagerie together with my daughter's home while my daugher is away with her family - who is she doing it for? Me, her sister of course! So that my daughter can have a holiday to relieve some of the stress she is under and before she comes home to take up her new job. And I hold a key to this sister's home so we can use it for a break, even while she is away. Diana, you are much loved - but you know that.
Sally now - another sister (no 'in-law' title here although she is married to my brother). She is my sister too and has been for over 40 years. Someone to laugh with, share with, shop with (more handbags Sally??) and then we have Geraldine, Dawn and Caralyn, Neil's sisters and mine too. Always there. Geraldine who told me on my wedding day how glad she was that I was marrying her brother. So we are all sisters and all much loved. I hope that I am half the sisters that they are to me
Sally now - another sister (no 'in-law' title here although she is married to my brother). She is my sister too and has been for over 40 years. Someone to laugh with, share with, shop with (more handbags Sally??) and then we have Geraldine, Dawn and Caralyn, Neil's sisters and mine too. Always there. Geraldine who told me on my wedding day how glad she was that I was marrying her brother. So we are all sisters and all much loved. I hope that I am half the sisters that they are to me
Tuesday, 27 July 2010
POST SPLENECTOMY
My splenectomy went well. It was a clean, textbook, keyhole procedure and I was home in 2 days. The very worst thing about it was the after effects of the drugs of which I may blog later. It is so good to be home enjoying the small things, like cups of tea at 4am and chats with Shreddy (my cat) in the small hours.
I saw my consultant on Monday. The GREAT news is that the hemolysing appears to have stopped and it seems that it was the right decision to remove my spleen. My blood counts are also looking much better. We know with CLL and AIHA that things can turn on a sixpence but for now I am content and feeling peaceful.
I saw my consultant on Monday. The GREAT news is that the hemolysing appears to have stopped and it seems that it was the right decision to remove my spleen. My blood counts are also looking much better. We know with CLL and AIHA that things can turn on a sixpence but for now I am content and feeling peaceful.
Thursday, 22 July 2010
SPLENECTOMY DAY TOMORROW
Tomorrow is the day for my splenectomy. We thought it would be a few more weeks, but we got called back from Wales where we were with family (hi Sums, Lyd, Mandy and Martin and Diana of course). The pre-op went well and was very well managed. It was decided that an echocardiogram was needed because of my chest flutters/explosions/purring/vibrations etc. This was done early this morning and since I've heard nothing different, I will report to the ward tomorrow at 7.30am. I admit I am scared....I am also afraid of the dark as well.....but I will be ok. You can't kill a bad thing as my friends know, because I'm still here! Nearly 11 years of leukaemia now.
I know I don't have a public following - mainly because I don't know how to launch my blog into cyberspace, but anyone happening on this, please send me out some good, healing thoughts, prayers etc. Thanks.
I know I don't have a public following - mainly because I don't know how to launch my blog into cyberspace, but anyone happening on this, please send me out some good, healing thoughts, prayers etc. Thanks.
Friday, 9 July 2010
MEMORY BOOKS/BOXES AND THE 'D' WORD
I saw Karen this week and it was so helpful. I can put trying to be positive aside when I am with her and this time she asked me if I was aware of the implications of the splenectomy and the 50/50 odds. Of course, I am very aware and it was such a relief to talk about it and my worries that I might not be able to have the operation or that my heart is giving so much gyp that things might not turn out so well. And what of after? I still don't want to go there.
We discussed that I was worried about the effect my dying will have on Summer and Lydia. I know I am a much loved Grandma. I want them to remember me as Grandma and not as an 'illness'. The same for Mandy. I want her to remember me as the mum who has always loved her so much even if she didn't always know it. Karen suggested memory books or boxes and at the time I didn't think it was a good idea. But since I got home I have been thinking and planning and sorting. I already have a box of stuff put aside for Mandy and now I am sorting photos (maybe this is the source of the happy memories!). For Mandy my plan is a book about her and me, mother and daughter and who I really am. I plan to use photos and write little things down that I remember. I hope I will have plenty of time to finish it. For Summer and Lydia I want to do memories of times spent together and a little of what I was like when I was their age. It is a big task. There are photos everywhere and many ideas in my head.
We discussed that I was worried about the effect my dying will have on Summer and Lydia. I know I am a much loved Grandma. I want them to remember me as Grandma and not as an 'illness'. The same for Mandy. I want her to remember me as the mum who has always loved her so much even if she didn't always know it. Karen suggested memory books or boxes and at the time I didn't think it was a good idea. But since I got home I have been thinking and planning and sorting. I already have a box of stuff put aside for Mandy and now I am sorting photos (maybe this is the source of the happy memories!). For Mandy my plan is a book about her and me, mother and daughter and who I really am. I plan to use photos and write little things down that I remember. I hope I will have plenty of time to finish it. For Summer and Lydia I want to do memories of times spent together and a little of what I was like when I was their age. It is a big task. There are photos everywhere and many ideas in my head.
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