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?
Thursday 16 December 2010
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.
Thursday 8 July 2010
REFLECTIONS ON COMING TOWARDS THE OTHER END OF LIFE
It's always been said that when I person is dying, their life flashes before their eyes. While I am not actually dying at the moment (I hope) my brain is engaged in a similar thing. My mind is constantly replaying episodes of my life - like a journal or a cine film. One minute I am at my daughter's wedding and the next I see my mother give me some gold earrings and when I ask why because it's not my birthday, she tells me it's because she loves me. It's really the only time I ever heard her tell me she loved me! There is something wonderful going on here. So many episodes of half forgotten things and great big things and things inbetween. For some reason the old bad parts aren't there, just the funny, happy times. They replay at night when I can't sleep (and this is often)and during the day - even when I'm cleaning my teeth. When mum was close to dying from CLL and we were on holiday together, I often caught her staring into space and now I wonder whether the same was happening to her. I do hope so.
AIHA AND SPLENECTOMY
Another few months have passed and I am so tired. We managed to get to Wales to see the family in May and it was really lovely. Family really is everything and those granddaughters of mine really know how to make me laugh. I hope they know how much they are loved....my daughter too.
I knew the AIHA was back while I was in Wales. The stairs were difficult, breathless while walking and of course, the old chest vibrations and palpatations. Couple this with feeling really unwell and you have AIHA. My consultant felt my blood counts were ok and had given me another 8 weeks before I needed to see him again. After just 3 weeks and feeling so ill, I had to give in and pay another visit This time the reticulocytes were upto about 174 and hemolysing was going at a rate of knots. Dr Roy was very concerned and it seems now the only way forward is a splenectomy. He explained that there is a 50/50 chance that it will help. 50/50 - half empty or half full? I haven't asked what will be next if it doesn't work, I don't want to know at the moment....one thing to handle at a time. He said to be prepared that spleen could be full of CLL. Once we have the hemolysing under control we will have to tackle the CLL. Meanwhile I am back on high dose steroids with all the side effects, yuk! Things are moving fast and I have another appointment next Monday with Dr Roy and an appointment with Mr John, the spleen surgeon on Tuesday to plan a way forward. I have had the pneumonia and meningitis injections ready to go as I believe they want to do this quickly. I am afraid Mr John won't do it because of cardiac problems. An ECG last week was all over the place.
I have already noticed one of my sisters seem to be pulling back and I haven't heard from my brother in quite a while. I understand this as I feel this way too when someone is struggling with illness. We don't know what to say or how to cope. But my main worry is Neil and who will look after him and support him? Or will it be the same thing again that he has to cope with everything mostly by himself. A shoulder would be a good thing to offer.
I knew the AIHA was back while I was in Wales. The stairs were difficult, breathless while walking and of course, the old chest vibrations and palpatations. Couple this with feeling really unwell and you have AIHA. My consultant felt my blood counts were ok and had given me another 8 weeks before I needed to see him again. After just 3 weeks and feeling so ill, I had to give in and pay another visit This time the reticulocytes were upto about 174 and hemolysing was going at a rate of knots. Dr Roy was very concerned and it seems now the only way forward is a splenectomy. He explained that there is a 50/50 chance that it will help. 50/50 - half empty or half full? I haven't asked what will be next if it doesn't work, I don't want to know at the moment....one thing to handle at a time. He said to be prepared that spleen could be full of CLL. Once we have the hemolysing under control we will have to tackle the CLL. Meanwhile I am back on high dose steroids with all the side effects, yuk! Things are moving fast and I have another appointment next Monday with Dr Roy and an appointment with Mr John, the spleen surgeon on Tuesday to plan a way forward. I have had the pneumonia and meningitis injections ready to go as I believe they want to do this quickly. I am afraid Mr John won't do it because of cardiac problems. An ECG last week was all over the place.
I have already noticed one of my sisters seem to be pulling back and I haven't heard from my brother in quite a while. I understand this as I feel this way too when someone is struggling with illness. We don't know what to say or how to cope. But my main worry is Neil and who will look after him and support him? Or will it be the same thing again that he has to cope with everything mostly by himself. A shoulder would be a good thing to offer.
Wednesday 21 April 2010
DEPRESSION AND ANXIETY
It has been a rough few months mentally. I see my consultant every 4 weeks (sometimes more). I have been told my spleen needs to come out/can stay in/must come out and so on. My AIHA is worsening/better/no sign of/back again/maybe burned out. I know this is because my blood counts are up/down/up/down and my spleen grows and shrinks and grows and shrinks, but my peace of mind is nowhere to be seen. We talk of CLL as being a rollercoaster but it is also 'relentless' at times, and has been relentless for well over a year now. (Definition of Relentless is Unremitting; merciless).
There are so many other things going on too. The way my pills/food stick on the way down (so bad I tried to make myself sick a few weeks ago), the pain that wakes me up when I lie on my front (is it my ribs/breast?), my right leg gives way and is very painful for a few minutes and most nights/mornings the pain at the top of my thigh/groin wakes me up throbbing. I am trying to address some of this - I've arranged a breast x-ray and to have a camera down my throat and am waiting for appointments for this. I am unable to take my Ibandronic Acid for osteoporosis because I'm afraid it will get stuck and burn. My consultant says I must take it because I've been on steroids for so long my spine could collapse. And so depression has overtaken me and together with anxiety, life is grey and full of worry and 'what ifs'. I would like a bone scan too but this will just be more radiation and I have not been offered one yet.
I've not started on any anti-depressants as yet - I don't feel I can swallow them at the moment. Even thinking about it makes me anxious. This week I have turned to my local cancer center again. I haven't been since July/August last year and my contact there has suggested that I have been trying to cope by myself for too long. It is such a relief to speak to speak to a professional about my anxieties. When I was first diagnosed I never believed this disease would go on for so long.
There are so many other things going on too. The way my pills/food stick on the way down (so bad I tried to make myself sick a few weeks ago), the pain that wakes me up when I lie on my front (is it my ribs/breast?), my right leg gives way and is very painful for a few minutes and most nights/mornings the pain at the top of my thigh/groin wakes me up throbbing. I am trying to address some of this - I've arranged a breast x-ray and to have a camera down my throat and am waiting for appointments for this. I am unable to take my Ibandronic Acid for osteoporosis because I'm afraid it will get stuck and burn. My consultant says I must take it because I've been on steroids for so long my spine could collapse. And so depression has overtaken me and together with anxiety, life is grey and full of worry and 'what ifs'. I would like a bone scan too but this will just be more radiation and I have not been offered one yet.
I've not started on any anti-depressants as yet - I don't feel I can swallow them at the moment. Even thinking about it makes me anxious. This week I have turned to my local cancer center again. I haven't been since July/August last year and my contact there has suggested that I have been trying to cope by myself for too long. It is such a relief to speak to speak to a professional about my anxieties. When I was first diagnosed I never believed this disease would go on for so long.
Sunday 7 February 2010
BONE MARROW RESULTS
The results of my bone marrow biopsy are in. There is still 10-12% of leukaemic cells in the bone marrow. What does this mean? Well, my doctor calls it a 'good partial response'. What does it mean to me? Disease progression. It means that I still have leukaemia in my body after my last treatment. I didn't expect a complete remission this time, but it is still a disappointment. I had hoped that I might be able to forget my illness for a little while, but it seems not. The spleen question? To remove or not to remove? The decision is on hold at the moment as my doctor is going to ask advice of a world class CLL doctor. The question he is asking is, 'is it appropriate to remove my spleen at this time'. The AIHA is fairly stable and my dose of prednisolone is now 5mg and 10 mg on alternating days. I admit I am still depressed and my spirits are very low, but I am trying to hide it.
Sunday 31 January 2010
NOROVIRUS
Yesterday evening my husband and I went for a meal with friends. It had been booked some weeks before and we were all looking forward to it. Because of the length of time I have been ill and the fact that my immune system is so compromised, my friends know that if they have been ill they must telephone me straight away and then I will not see them until they are completely well. So you can imagine my horror when reaching the restaurant, that after the usual hugging and kissing, one of my friends loudly said that she had been unwell all week with Gastroenteritis! Being sick on Sunday and Monday with diahrrea(yesterday was Saturday) and ill enough to warrant a home visit from her GP as she had collapsed. Norovirus is still infectious upto 3 days from the disappearance of symptoms and she was still complaining of a sore tummy. I just didn't believe what I was hearing! If you have the norovirus you MUST STAY AWAY FROM IMMUNO COMPROMISED people for at least a week.
Wednesday 20 January 2010
CHRISTMAS 2009
I omitted to blog about Christmas. How could not have done???? Call it chemobrain.
Well, we managed to travel to North Wales to see our daughter, son-in-law and 2 granddaughters for a few days. It was a wonderful time for me....I'm not sure if anyone realised how much it meant to me to see my family. Now that I am so far along the CLL bench I always wonder when or if I will see them again. That's not being too emotional I think....it's just true. I love my daughter and granddaughters more than they would ever guess and time spent with them is very precious to me. Distance means we can't see them often but there isn't a day goes by without I don't think of them. I look forward to phone calls and emails and of course, I look forward to seeing them again soon. They are loved.
Well, we managed to travel to North Wales to see our daughter, son-in-law and 2 granddaughters for a few days. It was a wonderful time for me....I'm not sure if anyone realised how much it meant to me to see my family. Now that I am so far along the CLL bench I always wonder when or if I will see them again. That's not being too emotional I think....it's just true. I love my daughter and granddaughters more than they would ever guess and time spent with them is very precious to me. Distance means we can't see them often but there isn't a day goes by without I don't think of them. I look forward to phone calls and emails and of course, I look forward to seeing them again soon. They are loved.
Saturday 16 January 2010
DEPRESSION
A new year. A time I always thought of as being a new start with everything to look forward to.
But with the this disease......My last post shows I had been told there was no evidence of haemolysing (AIHA). Mmmmmmm. However, destruction of red cells continues. Yes, haemolysing has not gone away. My Prednislone dose had got down to 5mg and the pattern of the past year is that once at this dose for a couple of weeks, the destruction of the red cells starts again, which is what has happened. I have had a bone marrow biopsy this week (not the most pleasant of procedures) and depending on the result and discussion with the rest of the hospital team, I will learn on 1st February if I am to have my spleen removed. This, it is hoped, will help with my red cells.
I am tired of living with CLL and I am depressed. Ten years is a long time to be ill. I would like to book a holiday in the sun and go away and relax for a couple of weeks. But I don't feel well enough to travel far and travel insurance is a nightmare at the best of times. Travel Insurance.....maybe another topic here.
But with the this disease......My last post shows I had been told there was no evidence of haemolysing (AIHA). Mmmmmmm. However, destruction of red cells continues. Yes, haemolysing has not gone away. My Prednislone dose had got down to 5mg and the pattern of the past year is that once at this dose for a couple of weeks, the destruction of the red cells starts again, which is what has happened. I have had a bone marrow biopsy this week (not the most pleasant of procedures) and depending on the result and discussion with the rest of the hospital team, I will learn on 1st February if I am to have my spleen removed. This, it is hoped, will help with my red cells.
I am tired of living with CLL and I am depressed. Ten years is a long time to be ill. I would like to book a holiday in the sun and go away and relax for a couple of weeks. But I don't feel well enough to travel far and travel insurance is a nightmare at the best of times. Travel Insurance.....maybe another topic here.
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