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.
Monday 16 February 2009
Tuesday 10 February 2009
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!
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!
Thursday 5 February 2009
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.
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.
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.
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