April 5th NHS help – don’t bother just live in La La land


From Mark

On April 2nd my sister Janet and husband Bryan arrived bearing a truly magnificent turkey pie. Enjoy it I did but bowel cancer is just that so this lover of fine food does now have a downside – multiple loo visits during night.

Same in hospital. Went.for 3rd.chemo yesterday. Blood test better so OK to proceed. Everyone else brings bags of food for their 3 hour session. One had a home made Madeira for his 10 hour blood transfusion. But I risk eating nothing rather than have to drag my pillar of poisons to the loo and back.

Janet made the receptionist’s day when she asked for help on crossword. He got Yakitori and was chuffed to know he’d done the Times crossword albeit the ‘easy’ one.

Third chemo went ahead and this time it’s the full dose meaning 6 more chemo tablets, size of pessaries but taken orally today and 6 more tomorrow.

From Jenny

Many thanks to Janet and Bryan for coming to stay and help share time with Mark. And thank you for taking him to the hospital for chemo – a task that I dread. The time on my own meant I could create a new, softer bed, without him telling me the old one was fine and get essential work done.

In the fifty two years that we have been together, Mark has always been so strong in body and will and busy with new schemes and help for others. When we moved to Lewes he immediately joined Southover Bonfire. As a Down from Londoner, he knew he had little time to prove his worth as a bonfire boy so set up the annual May Fayre which this year, its tenth is held on May 20th in Lewes Priory. Many other local initiatives were supported and in Seaford he gave his rum and gin tastings to raise funds for the Sailing Club as well as taking the safety boat out to sea during racing days.

Now his cancer has exhausted and debilitated his energies – as a friend said ‘Cancer is very selfish’

This is the poem that comes into my head this week – Dylan Thomas written for his father
‘Do not go gentle into that good night, Old age should burn and rave at close of day; Rage, rage against the dying of the light.’ Written for his dying father.

Becoming a carer

Last week in the middle of the night I joined the Macmillan Cancer Support Online Community. Eight weeks after diagnosis I identify as the carer and here is a Carer group for me on the site. What a wealth of stories and help is found on the website but I wonder if it was voyeuristic to read the postings. It is a private space where people share the raw issues of their lives and it has given me confidence to know that many postings echo my inner thoughts. There are so many posts, so many carers dealing with challenging health issues, and maybe finding support from a chat room. And so many like me that find the health system is broken and in the end the carer is left alone to cope.

How not to get grumpy when people say. ‘You need to think positively.’

What does that mean? Give me some clues when the oncologist’s letter says ‘palliative, terminal’ with big, medical cancer words for what lies ahead.

Some posts write about the helplessness of dealing with pain. And the frustration that medical services are closed at weekends. The four days of Easter have been especially long for me. Chat room responses show the expertise that carers have learnt. Drug treatment with opiates needs laxatives to take with them to help constipation – this is a serious issue for Mark with his blocked bowel.  But pain relief must be carefully managed – so it’s down to me again to find help. Google has become my doctor.

They unburden the stress and frustration when the patient gets sent home quickly after treatment to a bewildered and unprepared carer.

How the carer must look after themselves as they are the one left standing.

As the airline says – Put your oxygen mask on first before helping someone else.

Carers need to keep an hour or so a day for themselves to have a nap, read a book, go for a walk, play on the computer – so thankyou to all who have stayed and visited and given support.

And carers will get by because we have to.

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