CHRISTMAS SPIRIT

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

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

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

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

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

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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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)

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)

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

(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

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 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.