Chronic Lymphocytic Leukemia - Journey with Soapy

CHLORAMBUCIL

2011-07-28T08:46:00.000-07:00

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!

CLL - CONTINUING THE ROLLERCOASTER RIDE (2)

2011-07-28T08:29:00.000-07:00

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.

CLL - CONTINUING THE ROLLER COASTER RIDE

2011-07-28T07:59:00.000-07:00

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.

CLIVE JAMES AND CLL

2011-05-05T04:50:00.000-07:00

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'.

Japan

2011-03-14T10:03:00.000-07:00

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.

PREDNISOLONE WITHDRAWAL

2011-02-13T08:16:00.000-08:00

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.

ANOTHER DIAGNOSIS

2011-01-27T04:55:00.000-08:00

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.

THE BIRTHDAY GIRL IS 63 YEARS OLD

2010-12-16T08:52:00.000-08:00

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?

GLAUCOMA?

2010-12-16T08:35:00.000-08:00

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???

LOW SPIRITS

2010-12-03T09:43:00.000-08:00

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?

NO COMMENT

2010-12-03T09:14:00.000-08:00

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?

FURTHER ALONG THE BENCH

2010-11-07T07:40:00.000-08:00

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.

NHS GP SURGERY PRACTICE NURSES

2010-08-05T09:30:00.000-07:00

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.

From the Prophet by Kahlil Kibran - On Dying

2010-08-02T05:54:00.000-07:00

'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'.

30 YEARS OF LOVE

2010-07-30T22:20:00.000-07:00

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.

COMING OUT

2010-07-28T23:47:00.000-07:00

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

2010-07-28T23:40:00.000-07:00

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

POST SPLENECTOMY

2010-07-27T22:16:00.000-07:00

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.

SPLENECTOMY DAY TOMORROW

2010-07-22T07:00:00.000-07:00

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.

MEMORY BOOKS/BOXES AND THE 'D' WORD

2010-07-09T00:12:00.000-07:00

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.

REFLECTIONS ON COMING TOWARDS THE OTHER END OF LIFE

2010-07-08T23:57:00.000-07:00

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

2010-07-08T23:43:00.000-07:00

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.

DEPRESSION AND ANXIETY

2010-04-21T07:11:00.000-07:00

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.

BONE MARROW RESULTS

2010-02-07T05:54:00.000-08:00

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.

NOROVIRUS

2010-01-31T07:07:00.000-08:00

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.

CHRISTMAS 2009

2010-01-20T08:04:00.000-08:00

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.

DEPRESSION

2010-01-16T06:48:00.000-08:00

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.

CHRISTMAS SPIRIT

2009-12-20T08:34:00.000-08:00

I must have the best husband ever. He has decided to make this the best Christmas ever for us all. We are hoping to go to North Wales to stay with our daughter, son-in-law and 2 granddaughters. We don't want them to have to 'do everything' so Neil has been cooking for days. So far he has made a Christmas pudding, A Christmas Cake, mince pies, vegetarian sausage rolls and ordinary sausage rolls. He has done the shopping for the ingredients and learned much from scratch from Delia Smith's new book. No one but Neil and I know the effort and love that has gone into this, but surely this is the spirit of Christmas!!

WHITE BLOOD CELL DOUBLING

2009-12-10T07:38:00.000-08:00

21 November WBC 2,700
24 November WBC 4,000
7 December WBC 9,400

Is this a doubling of WBC? Or will it plateau out in normal range? My gut feeling is that its a doubling but I will know on 21st December when I have another blood test. This is such a ******* of a disease. It seems never to be still. I prepare myself for some good news and I get bad. I prepare myself for some bad news and I get good......trouble is that I am an old hand and this and I don't believe the Junior Consultant. I am an emotional mess.

When the counts are reasonably good and my scan is good, my family and friends think I am back to my old self (pre-illness). This is just a paper reading and my body does not reflect this at all. I do not believe for one moment that the AIHA is sleeping....dozing maybe, but if I were a gambling person I would put money on it waking within one month.

TEN YEARS AFTER MY DIAGNOSIS OF CLL

2009-12-08T08:37:00.000-08:00

Four rounds of FC and 3 of Rituxan later and it was feared the Rituxan wasn't working as my spleen refused to shink. My doctor told me to be ready to have my spleen removed in the New Year 2010. The AIHA has been up and down for a whole 12 months now and I've been on a varying dosage of Prednisolone. It seems as if the moment the dose drops to 5 or 10mg a day then the hemolysing starts again. Before the last round of FCR I was feeling very tired and ill. Afterwards I just continued to feel sick and couldn't sit or stand upstraight without feeling ill. I didn't want to eat or drink anything either. I was admitted to hospital again on 19 November with Neutropenic Sepsis and back on 50mg Prednisolone as the hemolysing roared in again. That evening I was ready for the body wagon. I felt so ill I would have climbed in myself and checked out. There was much concern among the doctors that the AIHA could not be controlled. My husband was totally worn out with all the worry and so was I. However, 3 bags of blood and several days later and I was feeling more myself (whoever myself is......is it the patient? Where is Soapy in all of this...is she still here? Who is the person I see in the mirror? That person is NOT ME. She is just a shadow who bears a faint resembance to me.

I was discharged after 6 days.
Two weeks later and my doctor is on holiday. I saw a junior consultant who knew nothing about me. He says my blood counts are normal and my CT scan shows nothing abnormal. He also says there is no sign of hemolysing. Why is it that my bloodwork never reflects the way I feel. I still feel weak, shaky and exhausted and a bit of a burden on those who love me.

LYDIA

2009-10-09T03:26:00.000-07:00

Yesterday was a 'red letter' day.....another long letter from Lydia (My youngest Granddaughter)aged 13. One day I am determined to publish her letters in a book and call it 'Letters From Lydia'. Much news is passed on....this letter deals again with the guineapig situation and how 2 pet guineapigs were (unknowingly) pregnant when given to Lydia by a friend. So far a 3 month old guineapig has had 5 babies. One has died which was most traumatic! Now the other guineapig is about to give birth and the question is......
Who Is the Father?????
Lydia at first thought it must be the father of these 2 guineapigs, but now is sure it is the brother. Such goings on and I haven't met any of the gps yet. Together with long newsy letter is the 2nd part of the cartoon drawings detailing the story of the guineapigs. Lydia is an excellent cartoonist and I'm sure one day could have a career drawing if she would like to. She is also planning a 12 mile cycle ride for Children in Need (UK) and needs sponsors. Of course I am absolutely sure I have no readers out in the ether, but I am sure you will like to hear of her progress as she gets into training.
Lydia, if ever you read this let me say that your letters are the very best. I have told you this often. When a letter arrives we sit down with tea and biscuits and have time with Lydia (its the next best thing to being with you) and you know how very much we love you. Now I have to plan my reply (with love and hugs, Grandma).

BLOOD TRANSFUSIONS

2009-09-26T07:53:00.000-07:00

Yesterday I received another 2 units of blood. It took about 6 hours including a saline flush to infuse. This is not the first, or even 2nd blood transfusion I have had and I must say that although I will never meet the donors of the blood, I would like to say a heartfelt thankyou. Thankyou is a simple word and can never send out the message of 'giving thanks' as I would like to send it, but this is a personal thankyou from Soapy. Because you took the time to donate, today I feel better, I feel a little stronger. I also have a rosy flush in my cheeks instead of the palor which marks me as a leukaemia patient. This is good for my family too to see me looking better. This in turn makes them feel happier. So Mr, Miss, Mrs, Ms Donor, I was thinking of you while your blood was infused in me and wishing you well. Bless you all.

RITUXIMAB

2009-09-26T07:39:00.000-07:00

I had my Rituximab over two days (although my white cell count had only gone down to 80,000) with no problems which was excellent. The day after the 2nd infusion I felt much more like my old self.

2009-09-19T08:35:00.000-07:00

24 August. The AIHA is back with a vengence. Because I presented with a white cell count of 220,000 (should be about 10,000) I was admitted that day for chemo as an in-patient. The last time I had this treatment it ended in Septacaemia which made me very ill. This was a factor in deciding to halve the dose of FC (treatment) for the time being and when the white cell count dropped, to add Rituximab (another type of chemo). I had to have 3 bags of blood transfused before they could start which was a problem in itself. Any transfusion I have has to be irradiated and the blood bank in Bristol was snowed under. It took over 24 hours to arrive with my doctor telling them to get on and 'blue light' it up the motorway. Anyway, the new blood stopped the symptoms of the AIHA and had I no problem with the chemo at 50% dose.
They spoiled me rotten in the hospital, we had lots of giggles, including one about my doses of Sennacot and perhaps a sunami in the loo in my room....... Another was that my potassium was down so if I agreed to eat at least 2 bananas a day, then they would cut a dose of the awful Sando stuff (like 2 tablets of sterident for false teeth in water)......I was never sure if I had ordered my bananas (chemobrain) so at one stage my room looked like a market stall! After 8 days they let me out for good behaviour.

I am back on the steroids (oh joy) and my surgery has supplied me with a blood pricker as my glucose level is higher than they would like.
On Wednesay 9th Sept I learned that the half dose of FC chemo didn't work at all. We were supposed to wait about 4-6 weeks before starting again, but agreed the white cell count is too high (177,000) and best to go ahead with more chemo asap. If we could get the count down, then we can hit on the head with Rituximab). Well, that was last Wednesday.

Early Thursday last week (12.30am) I woke up with chest pain radiating up to my jaw/teeth. I can't believe I just left it, but I did, my reasoning being that I didn't want to go back into hospital - how daft is that? My husband was in the den and I didn't tell him, I just waited for it to pass (what a complete idiot I am) and then funnily enough I went back to sleep. I told him the next morning but the pain was gone and so I carried on as usual. By lunchtime I could feel tightness building so my husband drove me to my GP. No doctors on duty as it was lunchtime! However, the practise nurse took control and told me off (nicely), did an ecg and phoned 999 I was taken to hospital by ambulance where I spent the night in Medical Assessment Unit. This is not my usual hospital as we had to go to the nearest Accident and Emergency dept to where I live. Because of my previous angina I was really worried, especially being due to start chemo again on Monday, but I was discharged late Friday afternoon. They did cardiac enzyme tests, chest xray etc but it is not believed to be a cardiac problem, just treatment, CLL, AIHA etc etc.

By Monday 14th SeptemberI was a bit of a mess, lifeless, exhausted and shaking, I can't begin to explain how I felt. I went to my usual hospital to start the full dose of chemo. I have chosen to have this by the iv method and it went well, so far anti-sickness pills are working wonders and I haven't been to see the Big White Chief (but I won't crow too soon). When I explained how ill I have been feeling, my doctor told me that my leukaemia is 'very active'. Can you just imagine all those little cells being very active? Doing what? running marathons??? I finished the last lot of chemo this morning for this cycle. We've been going in every day which is very tiring for both of us. At least I get to lay on the bed and play the lady. We have these great electronic beds, but yesterday I pushed the wrong buttons and the bed ended up in a V shape with my bum down in the V. Actually it was quite comfy until a nurse rescued me and got the bed rebooted. My lovely man has been coming and going and he's totally worn out. I'm not sure how I would react if the tables were reversed. Strangely enough you might think I would get a little depressed here, but | am feeling confident (must be the cyclizine which I believe is a choice of drug for some addicts).

If my WBC is down to 22,000 on Monday 21st September I am to begin Rituximab. Wish me luck.

I AM

2009-09-06T05:54:00.000-07:00

In no particular order,

1. I am a wife who loves and is loved

2. I am a loving Grandma to 2 beautiful granddaughters

3. I am a good mother

4. I am a sister

5. I am a keeper of secrets

6. I am a closet singer

7. I am a veteran in CLL and it’s treatments

8. I am a survivor

9. I am an OAP with a Pension, hooray

10. I am blessed

11. I am someone who prays

12. I am a winner of holidays, prizes and premium bonds

13. I am a believer in angels

14. I am a good friend

15. I am excellent at hugging and do it wherever and whenever I can

16. I am a writer who expresses herself better on paper than using the spoken word

17. I am like an iceberg, most of me is hidden below the surface

18. I am like a flower who blossoms when I am loved

19. I am a daughter with no parents

20. I am a still the child who was ‘born without shame or blame and truly faultless’ (Bernie Seigel), although I may have gathered a few faults along the way!

Another Hospital Stay

2009-09-05T06:21:00.000-07:00

A quick update….. I saw my doctor in August and treatment (FC) was planned to start 25th August. I hadn’t been feeling well for a couple of weeks and the blood tests pre-chemo on 25th showed my old friend the AIHA is back with a vengence. Because I presented with a WBC of 220,000 I was admitted that day for chemo as an in-patient. I have had FC twice in the past, the last time over 2 months which ended in Septacaemia which made me very ill. This was a factor in deciding to halve the dose of FC for the time being and when the WBC drops, to add Rituximab. I had 3 bags of blood which stopped the symptoms of the AIHA and had no problem with the chemo at 50%level. However, I am anaemic (although now upto 10 which is good). My WBC is going completely haywire and from 1st Sept to today, 4th Sept, has jumped from 121,000 to 177,000 which is an average climb of 14,000 a day!! I have another appointment next Wednesday and again the following Monday. After the Septacaemia last time we switched to Campath and I think this may be worth thinking about.

Having said all that, I am feeling better than for some time. I have decided to just stop worrying about it all (from poem Desiderata) "and whether or not it is clear to you, no doubt the universe is unfolding as it should". I had 8 days in the hospital with so much TLC and laughter. My medical team are the very best you can have. This is not a political post but I do have to say that my experience of the NHS in the Uk is of the very best, despite the bad press it often gets.

Starting Treatment Again

2009-08-21T08:09:00.000-07:00

In less than 2 weeks I have lost myself somewhere. In less than 2 weeks I suddenly have no energy, rapid heart beat, feeling of concrete in my arms and legs and everything is such an effort. Even small things leave me breathless. The AIHA is taking me over again.

On Monday I start treatment. It was to have been Campath, but it has now been decided to try FC again with Rituximab later. However, this morning my doctor phoned to say that my Creatinine test is low and although we are still going ahead with the treatment it will be a half dose. I am relieved as the last time FC was very toxic for me.

So the question is, how do I mobilise myself? Well meaning friends and family tell me I have done this before, and so I have. Three times. Three times with two remissions which have been good. But I have been warned to expect hospitalisation with infections and that this will be a very rough ride. My husband is very upset and we are both frightened. However, my hospital is excellent and the staff don't change much. I am part of the furniture there and sometimes I like to think I am a 'favourite patient'. The staff are so kind and caring.

Campath

2009-08-01T06:25:00.001-07:00

I have been out of remission a year now and I have counted up how many times I have discussed my next treatment with various doctors. 14!!! Yes, 14!!!! Treatment ideas have swopped back and forth between FC, FCR, FCR + Luxillimab, Treanda + R, Chlorambucil + R, Campath with or without Rituxan. And so the choice has been made for me, for various reasons and it is Campath for the 2nd time. I don't know when but I know it will be soon. Where will I find the resources in me to mobilise myself for treatment 3 times a week? Three times a week doesn't sound much, but there is the travelling and then waiting to see the doctor, waiting for the Campath to arrive from the Pharmacy, waiting for a nurse to be free to administer the Campath and then waiting 2 hours after the Campath before I can go home. Since I have always felt the choice to be FCR or Campath, I was surprised my doctor chose Campath. He feels FCR is too toxic for me as FC gave me Sepsis the first time around. Campath was no picnic for me either, it gave me Pneumonia after 11 weeks of coughing, fevers and nausea.

I am still on the Prednisolone (5mg alt days) for AIHA and not feeling as well as I would like but the year coming out of remission has shown that my doctor was right, there was no need to rush into treatment. There has been more quality time than I expected.

Is There Life after Diagnosis/Chemotherapy Part 3

2009-02-16T06:21:00.001-08:00

2005 we did the Moonwalk again and this time my husband joined us. He too wore a decorated bra! The three of us crossed the finish line in about 6 hours. These 3 Moonwalks had raised quite a lot of money for breast cancer and I was very proud to be involved.
A highlight of 2005 was another holiday win, to Austria again for a week, but this time to Zell am See. We were given a suite at the Hotel Romantic, just a short walk away from the lake. My white cell count had risen, my remission was ending, but I went on holiday and had a great time. We took a cable car up the Schmittenhohe Mountain and it took us 5 hours to talk back down. After that walk I could only walk or climb the stairs at the hotel with difficulty as my muscles had ceased up. We took a boat out on the lake, and rode the largest funicular railway in Europe (the world?) to the Mooser Dam. We ate strudel and drank hot chocolate with cream. However, I was not as careful as I usually am and one night was very sick and unwell, probably from something I had eaten. Like all our holiday wins it was wonderful, and not just because we didn't have to pay for a thing!

Treatment started just after Christmas and was FC again. However, this time my body did not accept the treatment so well and after 2 cycles (in 2006) I was in hospital with Septacaemia and I was very ill. My daughter had planned to visit from her home in France, and instead of the shopping trip we had planned, my daughter and 2 granddaughters were visiting me in hospital.

It seemed FC had not worked well this time and so we planned to recuperate for a few months and then start Campath in July. Campath made me feel sick, gave me fevers and I coughed my way through the 11 weeks of Campath until my doctor said 'enough!. I had wanted to continue to make sure we got all the CLL, but pneumonia put me back in the hospital. After my recovery my counts were very low for a long while.

Is There Life after Diagnosis/Chemotherapy Part 2

2009-02-10T06:20:00.000-08:00

Still in 2001... We took a week in the Canary Islands in May and in September we booked 2 weeks on a Mediterranean Cruise sailing from Southampton in England. This was our first ever cruise and was brilliant for someone who is not always feeling well, as by this time my CLL was having an impact. However, we joined in the ballroom dance classes and when I needed to sit out or didn't feel well enough, there was always a partner for my husband. He also joined in the line dancing classes and at the end of the cruise the passengers put on a display. (I have been line dancing for many years and have always enjoyed it very much. It has been 2 or 3years since I gave up my line dancing at home because I couldn't keep up any longer and I really miss it, but this was one things I continued to do through the years). During the cruise we visited Barcelona, Corsica,and Portifino amongst other places. I was to unwell to visit Pisa unfortunately and had to get some antibiotics from the ship's doctor, but it was lovely trip.
The day after we came home I had a hospital appointment. I was coughing and was diagnosed with Pneumonia.

2002 I was not feeling well and treatment started in March. Six months of Fludarabine and Cyclophosphamide. It settled into a pattern, FC for 3 days followed by a week of feeling/being sick and then starting to recover. It was not the best of times. As the months went on the treatment affected me more and more. However, we had short breaks away from home. My sister lived by the sea and went away a lot. We had a key to come and go as we pleased which was lovely. Just before the end of treatment we went for a cottage holiday in the Yorkshire Dales. It was lovely but I couldn't walk far.

2003 I spent a wonderful week with my sister in south-west Ireland as well as short breaks to France and in England.

Before Christmas that year, my sister said she was going to do the Moonwalk in May 2003. She is a breast cancer survivor and the Moonwalk was held in London, at midnight. It is a marathon power walk and not a run and decorated bras are traditionally worn for the walk. I agreed to do it with her, so we chose to do the half marathon and I started training. I would walk 1 mile and then turn round and come home. As I got fitter, my husband would drive me 9 miles to the garden centre, I would have a look around, a cup of coffee and then walk home by myself with my CD player, singing. Well, we did it and I have the medal to prove it. It was a wonderful night, walking past all the London highlights, Buckingham Palace, Harrods, along the side of the the Thames, London Bridge etc. You would be surprised how many people came out in the middle of the night to cheer everyone on.

2004 we did it again! Another 6 months of training for the walk as I was not at my best, and another medal. It would take us 6 hours to walk the 13 miles and my husband would meet us every 3 or 4 miles with hot coffee to spur us on.
2004 also bought trips to Venice and France and a 2 week Caribbean Cruise in December. We visited Aruba, Antigua, St Lucia and Barbados and well as other islands. My husband scuba dived and I snorkelled. I also fulfilled an ambition to ride a horse in the sea in Jamaica. I am terrified of horses and this was a big deal for me, but I did it and I have the photos to prove it!

Is There Life after Diagnosis/Chemotherapy Part 1

2009-02-05T03:04:00.000-08:00

This is for everyone who wonders what life may hold for them after diagnosis and/or chemotherapy. This is some of what I did since diagnosis.

1n 1999, as well as those two wonderful holidays, we had also been very busy raising money with table top sales and painting/selling glasswork. In 1997 we had hosted two girls aged 11 for one month. They came from the region affected by the Chernobyl nuclear reactor accident (in Belarus, formerly Russia) and were with us for rest, good food and some fun. We didn’t speak Russian and they didn’t speak English but we had a great time. For a first visit a charity (Chernobyl Children Lifeline) paid their airfare, but for a 2nd visit it was for the host family to raise the money. And so in 1999 we were busy doing everything we could to raise money for their airfare and organise trips out and about for the month they were with us. However, the time was getting nearer and nearer for their visit and I was feeling more unwell but obviously I didn’t want to cancel their trip as life in Belarus is very hard with little money and of course the girls were looking forward to it. We went ahead with the visit and I coped, but my visit to the haematologist was 2 days before they were due to fly home. He had told me not to worry about my mother’s CLL and so I didn’t. I left my 2 guests with a friend and went to the hospital alone and got my diagnosis. I was told I had probably had CLL for a few years before it was picked up on the blood test). My husband commuted to work and was 2 hours away and I had to pick up my girls and there was no time to collect my thoughts. I was so shocked. The following day there was a party for all of the children in our group and so we danced and partied and the diagnosis was put on hold until they had flown home the next day. I only mention this, because feeling unwell in 1999 and yet still managing to do so much was encouraging.

Watch and wait (and worry) came next. Maybe I should mention here that I like to enter competitions. My first big win being the holiday to Australia. However, another long white envelope arrived in 2000. This time we had won a week in Austria . Of course we were so excited and packed our walking boots and in September arrived in Kitzbuhl. I would be fibbing if I said I was full of energy, but of course my holiday log reminds me that I couldn’t get out of bed the first morning because I felt unwell. However, we did a trip down the salt mines, and a trip to the glacier at Gross Glockner (fabulous). We also took the chair lifts up the mountains and walked and walked. The views were spectacular. I found if I could amble along flatish surfaces I was fine. We had many hot chocolate drinks with cream on time and of course, apple studel. All the hotel expenses were paid for us and it was wonderful to sit in the hotel in the evening knowing that it was all free!! I probably pushed myself to the limit but I reckoned I could rest up when I got home. What a trip.

On to 2001. In January my neice was getting married in Antigua and my sister offered to treat my other sister and me to the trip! What did we do? We went of course and the 3 of us had a fabulous time. As usual the first day of the holiday found me in bed feeling unwell, but by then I learned to pace myself more and lie down if I need to. The wedding was wonderful, overlooking the sea and under a bower of flowers. And quality time with my sisters and my brother (the bride's father). Antigua - well, what can I say? White beaches, blue sea and and great company.

Still in 2001....In April my other sister, asked me if I would like to go to Lourdes in France as she would like to treat me. I am not a catholic but I have a faith in God and so we flew to Toulouse and then took the train to Lourdes. I can't explain Lourdes to anyone who has not been. It is such a very special place and we spent much time there. We also took a bus trip to Cauteret in the mountains, and then the ski lift to the top. Awesome. We stayed in a french bed and breakfast and ate in the local cafes. We walked in the countryside outside of Lourdes town and took the funicular railway up another mountain and walked back down.

My CLL Diagnosis

2009-02-05T02:31:00.000-08:00

1999 was a busy year for me. In December of 1998 I won a holiday to Australia (more on this later) which we took in March 1999. One week in Sydney and one week on the Gold Coast. However, before we knew of this fabulous trip, we had booked a two week holiday in Bali with my brother and sister-in-law. We had a brilliant time but when we got home I noticed that I wasn't feeling too good. I thought I had 'picked something up' in Bali and it would pass. In August of 1999 we went camping with my family. Camping is something we did quite a bit of as we like to put on the hiking boots and go walking. Well, on one of these long walks I didn't feel well. I tried to carry on but had to stop as the pain in my chest was so bad and I was so breathless and I was scared. In 1989 (when I was 41) I was diagnosed with Angina and had an angioplasty and so of course, I thought the heart disease was back.

Back at home I made an appointment with my cardiologist and had various tests done. He phoned me with the results. Heart/arteries were fine, but my white cell count was 22,000 and he was making an appointment for me with a hematologist.

In October I got to see this consultant and the diagnosis was CLL. I was shattered as my mother died with CLL.

Not So Strong After All

2009-01-30T07:31:00.000-08:00

The days are flying by and I find that most days I don't feel great. While I am waiting for the steroids to work on the AIHA I am in a kind of watch and wait. My consultant calls it 'borrowed time'. Borrowed Time as in 'when treatment/chemo starts again you are going to be very unwell'. And even though I don't feel great, I know this is a time to be thankful for.

So what would you do with your 'borrowed time?' I had a list of interesting things to do and places to go, but I find myself just wanting to be 'normal'. To do normal things like shopping or reading a good book or admiring the snowdrops and primroses (yes, they've been flowering since December) in my garden. Meeting friends for lunch. A bit of cooking, a bit of housework (even ironing - yuk).....things we take for granted when we feel well. Last week I found myself unable to go any further while I was in shopping. So I sat for 30 minutes on a sofa display while I recharged myself enough to get the energy to get back to the car. I found myself pondering the big questions

How much longer will I live?

How will I die?

Will I die well?

Where will I go?

A friend has found a new word for dying. It's being 'promoted'. I like it, maybe I will be promoted to an 'angel in training'. I found myself lost in thought and afterwards remembered my mother just before she was promoted. She used to look into the distance, lost in thought. Was she doing the same I wonder?

Today is the First Day of the Rest of Your Life

2009-01-20T04:47:00.000-08:00

This is a title to meditate on......

At the hospital yesterday I had some good news. It seems that the steroids may be working as the white blood count has gone down to 115,000 and my HBG is up to 12. Hooray. The steroid dose (Prednisolone) has been going down by 5mg a day from an initial start of 50mg and this week the dose is 10mg a day. Doesn't sound a lot but I guess this is what a drug addict feels when they aren't getting their full dose. I shake most of the time and don't feel at all well, but my doc says this is all to do with the steroids, so I am reassured that it is not all CLL. Next week the dose will change again and my doc says to be ready to start treatment at the drop of a hat. He thinks we will manage to keep my husband's angiogram date on 9th February and probably start after that, all being well.

Feeling Low Today

2009-01-17T06:37:00.000-08:00

Today I feel really ill. This is the worst I have felt in 9.5 years of CLL. I shake, I feel really weak and have no energy. Just sitting is an effort. For the first time I can't wait for my hospital appointment on Monday. My husband was diagnosed as possible angina yesterday and maybe the stress of the day/diagnosis has made things worse. Spes fovet et fore cras semper ait melius (forgive if spelling is wrong) But I believe it means 'hope ever surges on and says that tomorrow will be better'.

blogging

2009-01-15T07:31:00.001-08:00

I don't know if anyone reads my blog. I'm not sure how to launch it into cyberspace or if it does this automatically. Maybe if anyone finds it they would let me know. I have tried to understand the workings of it all, but chemo brain rules!!

Humming

2009-01-14T07:07:00.000-08:00

Time is flying by and no hospital appointment until the 19th when we will discuss the AIHA/treatment question again.

The effects of the steroids are well documented by others, but I have never read anything about what I describe as a kind of 'humming' or 'hovering'. When I wake in the quiet of the morning, I find my chest is vibrating very, very gently (as if waiting for takeoff) with a kind of silent humming. It's not an unpleasant feeling at all, just something I haven't felt before. It's not like my clumsiness where I drop everything in sight because the steroids make me shake so much. This is very different. And I wonder if this is a preparation for my leaving my body at a later stage? Is it my energy/ soul/ light/my essence? Now I don't find this scary because as I have blogged before, I believe I will go on in another life/world/whatever when I die, but it is very comforting for me to think this. I wonder if it will stop if/when the steroids stop? I will let you know.....

Our CLL Friends (Part 2)

2009-01-10T07:33:00.000-08:00

We continued to see my friend but now our paths had changed. She knew I was finding it hard and asked me what she could do and what was the matter? but I couldn't tell her that everytime I saw her I was overwhelmed with grief that I couldn't deal with or talk about with her. I knew that as I got sicker she would be the one to relive her husband's illness and I didn't want that for her. She needed to move on with her new life and make fresh friends. She was a special friend and a good friend. So we withdrew from the friendship.

I miss her, but I have had some counselling and was advised this was the best thing for us all and I know it was the right thing to do for us both. In the beginning when we first start our CLL journey, we look for others to support and to support us and it works very well. But as time goes by, and many CLLers I have been privileged to know have died, I find myself in a place by myself. No one talks about this kind of thing. There are no magazine articles on how to cope in such an emotional minefield. No-one addresses this on websites. There is no real answer either, no right or wrong way to behave. But you may disagree with me and that's OK too.

Our CLL Friends (Part 1)

2009-01-10T06:58:00.001-08:00

When I was first diagnosed I found a CLL site on the net. Through the site I have corresponded with many fellow CLLers over the years, and of course, some I met personally and came very good friends with. One, who I shall call 'R' was a very good friend. Her husband had CLL and we often went out together and enjoyed each others company. A few years went by and 'J' (her husband) developed AIHA and Bronchiectasis and became sicker and we both had more chemo. We attended the same hospital and would visit each other as in-patients. One day while I was in the chemotherapy ward "J" was admitted, he was very ill. He was wheeled in in a red wheelchair and looked for all the world like my mother just before she died of CLL. I was already finding it hard when 'J" coughed, which echoed the same cough my mother had and after that day although we kept meeting and sharing, it was hard. When 'J' died I was heart broken. Not only was my friend gone but I was also reliving my mother's death. 'R' of course knew we would be there for her. She promised me she'd help my husband when my time came. This was no comfort to me because I didn't want to talk about my death but I couldn't tell her in her grief. Neither did I want to know the details of her husband last hours, but I listened. It was at 'J's funeral while my husband supported my friend, and I grieved for 'J', I also grieved for my mother and I grieved for myself and my family and inside I 'broke'.

Beauty

2009-01-08T07:45:00.001-08:00

(Today I have posted a photo of me and Beauty in our younger days(we're somewhere on the right column) with my sister, just so you get the idea of what I write next). Here on the left is a picture of Beauty today.

What is Beauty? Beauty is 61 years old. Is he a he or a she? I don't know. He's my teddy, given the name Beauty and lived with me almost all of my life. He's about 10 inches tall and in my mind's eye I see him with shiny fur and bright glass eyes. Beauty was mine - not something I had to share with my sister and neither was he a hand me down. Like me he grew older. His fur not so furry and somewhere he lost an eye - but Beauty was still beautiful and much loved.

Such a cherished bear so why did I do it? No, I didn't send him to a charity shop. I gave him to my granddaughters - my much loved bear. I thought they'd love Beauty like I did, but one day on a visit, I found Beauty in the garden, most of his fur missing - almost bald even and worse of all, he'd lost his voice. He was wet and the stuffing had been knocked out of him and he was almost dead.

I was SO angry and upset, but I said nothing. I picked Beauty up and bought him home where he belonged. I dried him out and put him back in the bedroom. And although his growl has gone and he looks older than me now, he managed to convey that, like me, he has indeed seen life!

Thoughts on Life after Death

2009-01-04T05:57:00.000-08:00

That's a BIG title with much to say. I was bought up with Sunday School/choir and education in a Church of England School. As teenagers if we wanted to go to the church youth clubs we had to attend church, and so we did. We went to the different churches in turn, including Methodist and the Salvation Army, Catholic too. I loved it all, but have to admit that I feel much is missing in the modern church. I hope I don't upset anyone by saying that, but it is just my opinion. My God is the God of the Universe/World, the same God for all religions and is with us all whatever we believe. The last time I went to church was some years ago at Christmas with my family and grandchildren. Mary did not figure in the Christmas story apart from a passing remark, Joseph rode to Bethlehem on a pushbike with a knapsack of disposable nappies and a plastic babybath. Children ran riot over the altar and there seemed to be no respect from parents and children alike. I don't believe you can try to bring the Christmas story up to date.

My father believed in life after death and always said his mother came to see him after he had died (passed or whatever word you would like to use). He said he would do the same and he did. I had several experiences while he was by my bedside in the middle of the night. His scent was so strong and I just knew he was there. I was 26. For the nights that he came, he also visited by daughter who was 6 at the time. She asked me to ask Grampy to stop tickling her feet in the night as he woke her up :-) And so I firmly believe in some kind of afterlife. Maybe I will blog about my belief later.

Time to do What Exactly?

2009-01-02T04:30:00.000-08:00

2009 and its a new year, a new day and a new start if you want it. I have always like the beginning of January and the feeling of starting a new year afresh.

However, treatment is looming and yet another hospital visit on Monday. My husband is depressed, my daughter does not discuss how things are going - it is her way of dealing with everything. How can I mobilise myself for a fourth lot of treatment? WILL I mobilise myself and why will I do it? I have been told to expect hospitalisations and with all the trips back and forth to hospital and the time spent waiting I can tell my husband is at breaking point. He is very depressed. He will not talk to anyone about it, although we have great 'emotional wellbeing type help' which he will not take advantage of. I can't do this without his support. Maybe its time to let nature take its course and take advantage of quality of life instead of quantity?

Such decisions are only mine to make but I feel a burden to my family.... I feel so repsonsible for their unhappiness with the situation. My emotional help has told me that 'to FEEL responsible is not to BE responsible' which helps. No one talks about the 'death' word, just on and on about positivity and 'you have done it before, you can beat it again', but it would be much more helpful if we could get the spectre out of the closet, have a good look and maybe a discussion, and then put it back.

I am glad I have started to blog. It is good to feel anonymous and just send my thoughts into the ether. I just hope that anyone reading will understand that I am using this as a stress release and I hope that it is not upsetting anyone.

Diabetes

2008-12-19T23:35:00.000-08:00

I have CLL, I have AIHA and now I have steroid induced diabetes and I am fed up. I have been up most of the night having a Pity Party. Believe me, its a waste of time and doesn't make you feel any better to have these crying jags, but its not easy to turn off once it starts.

I saw a world class CLL expert on Wednesday to talk about joining the RFC +/- Lullilimub trial. However, due to the AIHA it is no longer available to me. I am relieved as I felt this to be such strong treatment.

Choices now are RFC if we can get funding for the Rituximab or Campath. I have used both of these treatments before and not really keen to get started again. On Monday I will have a chat with my consultant and decide. The decision has been a while coming, what with holidays, and other things and it will be good to make the decision and stick to it. Then maybe I will relax a little more. I would not like to be turned down for lack of funding, but trust that the 'universe is unfolding as it should'.

AIHA

2008-12-11T08:02:00.000-08:00

I have AIHA (auto immune hemolytic anaemia) and it seems my white blood cells (and I have thousands of them) are killing my red cells as soon as they leave the marrow. This has to be got under control before I start any treatment. My doctors tell me that they want to schedule treatment for the first week in January which is only a few weeks away. The problem is which treatment shall I have? I am inclined to try Campath again to hit the high white cell count and then Rituximab but as I use a UK hospital, maybe funding could be a problem.

It is my 61st birthday on Monday and I will be at the hospital! Then again on Wednesday at the Royal Marsden in Surrey. How I do see life and know how to enjoy myself!

I am having steroids to help with the AIHA which meant I spent yesterday in a heap of tissues. Feeling better today thank goodness. Fancy not being able to celebrate your birthday with a small glass of wine........ Maybe I'll just smell it :-)

2008-12-02T05:25:00.001-08:00

Today I am feeling a bit low. I am breathless and feel a bit weak. After 9 years of CLL (Chronic Lymphocytic Leukaemia) and 3 different kinds of chemo I have relapsed yet again. There is shock when you are first diagnosed and they tell you there is no cure. Just watch and wait, then your first chemotherapy, (Fludarabine & Cyclophosphamide). You think you will beat this thing. You do all the right kind of things, you eat well, you try to get enough sleep, fresh air, practise meditation. You have a remission and just know you won't be like the others and relapse.

Then after a couple of years you find the leukaemia is coming back again. Not like Acute leukaemia where you get treated straight away, with CLL you have to watch and wait while your blood levels change until you are 'ill enough' to be treated. And so I waited for quite a few months before treatment started again. I was turned down by the hospital for the drug my doctor wanted for me (Rituximab), the hospital wouldn't find the funding. So we tried the same chemotherapy (Fludarabine & Cyclophosphamide), but I only managed two months before got ill with Septacaemia and so the treatment stopped while I was hospitalised.

Four months went by and I started a new treatment. Campath. This treatment is given by injection 3 times a week which sounds easy. However, you have to travel to the hospital to have the injection and stay 2 hours before you are allowed home. All kinds of things keep you at the hospital. The drug has not been sent by the pharmacy, it was left out of the fridge, your blood counts are not high enough to take the treatment so come back tomorrow. And all the time you feel unwell. I ran temperatures every night which were controlled by paracetamol but it was like having flu for 11 weeks. I coughed and coughed my way through it. At 11 weeks treatment was stopped as I got pneumonia.

However, I also got another remission. This lasted for 2 years but early this year the blood tests showed the CLL was back again. Again the drug of choice may not be funded.

I know that treatment won't begin until after Christmas, but I don't know what the treatment will be or if my hospital will fund it. And so I find myself feeling unwell and mentally unable to face a fourth treatment. I am blogging so that I don't have to upset my family. It's a way for me to remain just 'Soapy' and get things off my chest. So thanks for listening.

My first ever blog

2008-11-29T08:07:00.000-08:00

Never having had a blog before I am somewhat of a novice. This is my first test message. Is anyone out there I wonder?