Carer and Mother of Child/Children with L.S.

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While taking my husband to hospital in 2012 for a routine colonoscopy I was feeling quite complacent.  Two other colonoscopies had been clear so I had little reason, I thought, to be concerned.  I was surprised to learn on collecting him that what was described as an “ulcer” had been found.  The surgeon had told my husband that he “didn’t like the look of it and either way it had to come out”.  We came home and I told myself that everything would be fine.

The next day, however, on my own at home the phrase “I don’t like the look of it”, the family history of cancer and the presence of Lynch Syndrome in his sister began to hit me.  I had one very anxious day.  I had visions of prolonged serious illness and was very fearful of what lay ahead.  After that day I calmed down and became rational.  His sister had coped remarkably well and I decided to take things step by step.  I reminded myself that in recent years great strides have been made in the diagnosis and treatment of cancer.

My husband, with the help of his surgical and medical treatment, dealt with the whole process well.  This in turn helped me.  There were some ups and downs along the way – but isn’t that life in general?  I let my husband lead the way.  I encouraged him to communicate his needs clearly to me.  Sometimes I discovered that he just needed leaving alone to get on with it.  Over the course of the chemotherapy his dietary and appetite requirements changed and I simply adjusted the meals cooked to cater for this.

St. James Hospital have a policy of training up a carer (spouse, friend or family member) to maintain a PICC line, which my husband had been given.  This proved to be a great help as it saved him two hospital visits per fortnight and could be done at the patient’s convenience.  I have to admit the first time I did it I was terrified.  Not being in the medical profession I was scared I’d forget some important aspect of the procedure or do something wrong.  It all went well and with practice I became more relaxed and confident.

My daughter was confirmed as Lynch Syndrome positive a year later.  I went through a period of intense anger and guilt.  The anger derived from my “mother hen” instincts and the guilt from the fact that I could protect her from it.  What helped me enormously through this is the realisation that although Lynch Syndrome positive people have a greater risk if getting cancer their prognosis is very good.

Through the experience I learned:-

(1) Open and clear communication between patient and carer is essential.

(2) Sometimes less is definitely more.

(3) There may be times when the carer has to get into the driving seat,  e.g. if decisions       regarding the patient’s welfare need to be made and the patient is too unwell to be able to make them.

(4) The carer needs to take care of themselves.  We all have our own way if doing this.  Mine was to meet my friends as usual whenever possible and keep my contact with the outside world.

(5) A sense if humour can be a great asset – it keeps one’s spirits up and maintains the energy to keep going.

(6) When my daughter had her preventative surgery my role was as nurse and cook for a couple of weeks. Thereafter, it was to be as a listening ear and be available to her when requested.

As of now, our family is cancer-free.  We all know that a new one can recur but we are confident that it is treatable.  We live each day as normal.  We know that nobody’s life span is limitless.  None of us, in any walk of life, know what the future may hold so we can only make the most of every day as it occurs.

Terri

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