Holiday time

I am just writing this after a lovely weekend when our son visited us from London.  It has been so good to get together.  My daughter and I are just off to Ireland for nine days which we are spending in a cottage in County Kerry.  After seven months of chemotherapy I am really ready for a change of air.

I am really aware how much I have benefited from the support of friends and family during this period and the first time I had chemotherapy. Good friends have provided encouragement and practical support.  Barbara rang up to say that she would organise a cleaner for me as I would need help in the house.  This brought us a real treasure, Colleen.  She lost her husband to cancer a few years ago so she is very understanding.  She has a real sense of fun and commitment which has been so helpful.

Friends from the Convent School have also kept in touch and provided much support and encouragement.  Obviously we have shared memories but somehow that school also engendered real friendships among the staff perhaps more so than most working environments.

This year has been more of a struggle than last year when I was in remission.  I need to look back to those wonderful holidays and being able to finish my school teaching career in such a happy and fulfilling way before I look at the more difficult months of 2009, both those in the past and the future.  Although many of the difficulties have been because of my lymphoma, there have been some problems and changes that have emerged this year which I could never have anticipated until my search for a bone marrow donor began.

 

Remembering Bar Harbor, USA, 2008

Today I am a little down as my platelets have dropped and I can’t have my scheduled chemo.  Until I get into complete remission I cannot go into the bubble for the bone marrow transplant.

However, not everything about illness is sad or depressing.  Vulnerability can mean that people who think you are fortunate or independent can find an opportunity to be helpful and supportive. Last year's trips to Europe, Canada and the USA with Raymond were an absolute tonic.

In May 2007 my daughter returned from her degree and Master’s studies to our home.  She has a separate flat in our house and it was wonderful to have her support and sense of fun during my first cycle of chemo, and since.  Next week she is taking me to Ireland which will be just the rest and relaxation we need.

During the illness of one person, the family suffer so much as they need to hide their emotions to bolster up the sufferer.  Their freedom of movement is also restricted but I have found that we now really say what we truly mean and it has been an opportunity to express our real feelings for each other.  If I do not survive The Bubble, my husband, son and daughter will never have any cause to regret all they have done for me.

Midsummer

 This week I have another blast of bendamustine to try to get me into full remission in order to have a bone marrow transplant.  It can be tough but I think there are much tougher times to come. Ultimately I owe being able to keep a sense of perspective and humour to good friends, relatives and my wonderful husband, son and daughter

During my first bout of lymphoma in 2007, good friends rallied round and gave support and encouragement.  I was surprised how much I appreciated things like cards.

Some people were a little dismissive of the condition perhaps because they did not know much about the illness or assumed all lymphomas are the same and are curable.  I have to confess I knew very little before I was diagnosed.  Many did not realise that my kind of lymphoma was incurable.  

Remission after very tough chemo is particularly sweet.  Gradually after chemo I grew stronger and my immune system returned to normal.  It was great to be able to travel again and go to France where we have many wonderful friends.  Something we had planned when I was at my lowest was a trip to New York and that was fantastic!

 

Coping with illness

 

So far this has seemed to be a very serious blog but not all life, however affected by illness can be without humour for long.  After my first lot of chemo, 6 cycles of CHOP-R, which was quite debilitating, I really enjoyed my remission.

 

I am very, very grateful that I was able to continue teaching during my first cycle of chemo and I owe so much to my very thoughtful headmistress and the kindness of colleagues.  Having a sense of purpose and dealing with pupils with their sense of humour and fun helped enormously.  It also meant that I earned a little respect from the medical personnel who were surprised that I was able to continue in what can be a stressful occupation.  I think that this is part of the reason why I have been offered the possibility of a bone marrow transplant.

 

Other people were so supportive too.  The hospital wig supplier turned out to be the mother of a pupil who made sure I had a really good wig and this was so carefully styled for me by my hairdresser that many people did not realise it was a wig at all.  Hair loss during chemo is very, very depressing.  For my latest two courses of chemo I have actually been able to retain my hair which has been much less ghastly.

 

 

 

 

 

 

If you are in a stationery line of traffic and a lorry ploughs into you, you might be tempted to think this a straightforward case.  Certainly the lorry driver was found guilty in court of the accident.

 

Not only had my husband received injuries from which he will never recover but we found ourselves in the hands of loss adjusters and insurers who were determined not to part with a penny.  The car was a write-off, photographic equipment was destroyed and my husband’s business was affected.

 

The case has still not come to court and the procrastination has been a cause of very real stress.  Obviously it has been my husband who has been majorly affected but what affects one of us has repercussions on the whole family and could well have triggered off the lymphoma which was diagnosed the following year.

 

 

On 4^th July 2006, my husband was in a stationery line of traffic having just left the M3.  It was a sunny morning.  Suddenly there was an almighty crash from behind and he was sent hurtling towards the steering wheel.  As the seat belt held, he remembers thinking he might escape harm but then he was sent hurtling back into the seat as he collided with the car in front and, at the moment of impact, he knew he had not.

 

Whether his subsequent memories are disjointed because he passed out or because of the head injury I am not sure, but he recollects trying to open the door of the car behind to help the occupants who were obviously seriously injured.  He remembers that he kept falling down and recalls looking at the driver of the waste disposal lorry that had ploughed into the 6 stationery cars at 58 miles per hour, who remained in his lorry cab talking on his mobile phone.

 

This was just the start of our troubles.  It is now three years since the accident and although the lorry driver has been successfully prosecuted my husband still suffers from his injuries.  Although the case has now been registered with the Court, I have no doubt the other side will use all the delaying tactics they can think of to avoid paying up.  Of course it is extremely stressful at a time when we should be spending valuable time together as a family, but the other side and their solicitors and insurers have no sympathy for the situation which they have caused.  We can only hope that justice will prevail.

 

The final trigger

I am writing this just as I am about to undergo my second day of chemotherapy this week.  I am not sure that it is working as well as expected so I may have to have some very serious weekly chemo in the future.  At the end of this week it will be three years since my husband had a serious accident and although the person who caused the accident has been found guilty in a court of law still the insurers, loss adjusters etc. acting for the other side are ducking and weaving to avoid paying out a just settlement.  The stress of this injustice has affected all of the family – but particularly my husband.

 

So far I have been looking at the effect of stress on the development of lymphoma.  No doubt what happened in the past has a bearing but when I was diagnosed I learnt that the disease was slow growing at the rate of 20%.  Some people have very indolent lymphoma which grows at about 5% and which can be controlled by tablets.

 

This makes me think that the final trigger may have happened just a few months before I became ill in early 2007.  I was very happy at the time.  I was working in a well-run and successful small independent school.  Both of my youngsters were doing well in their fields of study and work and my husband was proving very successful in his business.

 

When the accident occurred it was bad enough but the after-effects and procrastination by lawyers and insurers caused the deep-seated stress and changes to our lives which are still going on.