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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