Living With Mesothelioma -My Diary- Visited a Special Mesowarrior Friend xx


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Such a lovely day again as the sun rose over the horizon. I was awake again so very early but my throat was so much better and I was swallowing better with just a little pain.

Tidied up and then nodded off in the chair while watching the news.

We had an early lunch and then set off for Margate to visit a very special Mesowarrior. We called in and bought a bouquet of flowers.They had 2 ornamental cabbages in the bunch.

Winter Bouquet - Carole Gomez/Photodisc/Getty Images

Like this one but all green.

We went wrong when we got into Margate and we panicked we were at the wrong road. We have been before and thats what made it so silly. Going back and forth we couldn’t find the house. I told Ray to go to the sea front and see if we could track back from there as last time we had been for a lovely walk to the seafront. Going through the roads we came to the right one and found the house. A very senior moment there.

It was great to see our friends and lots of cuddles and kisses. I didnt want to tire her so we didnt stay long as 2 hours of laughing and talking was tiring  but we promise to go again soon it had been so good to see her and to know she is fighting Mr nasty but Chemo has done so much damage as it did me. I pray she will recover from the chemo bit by bit and get stronger before the winter to be able to fight infection.

I was given beetroot pulled fresh from the garden and I have come home and cooked them. It makes you feel so healthy eating fresh veg like this.

We called in to the Supermarket and shopped for food to take in the Motorhome as we are off to Rye for the C&CC 50th birthday party so it is lots of fun in the rugby club this week.

An email was here from the Royal Marsden changing my scan date. I sweated as I checked the dates as I had sorted my diary out for July/Aug but it is all good so everything is calm again.

My Local MP Julian Brazier has replied to my email regarding choice and free social care at the end of life.

It is a issue in which he has a great interest as he fought to save our Canterbury Pilgrims Hospice which was under threat of closure.

He gave me a link to our local Commissioning Group.

Dying matters

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Dying is an inevitability we will all face.

It is a topic most of us shy away from discussing, but talking about it can make all the difference to the person reaching the end of their life and those around them.

Next week (12-18 May) is Dying Matters Awareness Week and NHS Canterbury and Coastal Clinical Commissioning Group (CCG) is encouraging people to talk about their preferences for their end of life care.

Dr Maliha Karamat, GP at Saddleton Road Surgery, Whitstable and CCG clinical lead for End of Life Care, said: “Death is a subject that can be very difficult to broach, however, it’s important to let your family, friends and GP know what you’d like for the end of your life.

“Talking about the practical and emotional aspects of dying is important in ensuring a person’s wishes are carried out.”

The NHS provides support for people at the end of their life in a variety of ways, whether it’s from a palliative care team in the community, pain management at home, in a hospital or hospice.

NHS Canterbury and Coastal CCG has recently developed an End of Life Strategy. This includes information for GPs and practice staff and sets out commitments around:
• Supporting patients to ensure their end of life wishes are followed
• That people coming to the end of their life are able to die in the place of their choice, pain free and with dignity
• That support is provided to families and carers of those nearing the end of their life
• And that support is provided to families and carers once their loved one has passed away.

Dr Karamat added: “As a CCG we are committed to improving the quality, care and services for all our patients. Our End of Life Strategy is an important part of ensuring people nearing the end of their lives are made to feel comfortable talking about plans for when they die.

“How people die remains in the memory of those who live on so it is essential for the patient as well as their loved ones to be open about this discussion.”

Dying Matters is a national coalition which aims to change public knowledge, attitudes and behaviors towards dying, death and bereavement. It has produced a leaflet called You Only Die Once which lists five things everyone should do.

1. Live well and die well. Make your wishes known today.
2. Write your will. It is the only way you can be sure your wishes are carried out correctly – and it avoids leaving your family to make difficult legal decisions.
3. Record your funeral wishes. Have the funeral you want.
4. Plan your care and support before you get ill. Talk to your family, healthcare workers and GP. After a sudden stroke you may not be able to talk.
5. Tell your loved ones your wishes. Talking about dying often isn’t easy but you should share your plans and, if you have written them down, let your family know where they are kept.

For more information on Dying Matters see www.dyingmatters.org or call 0800 021 4466.

If anyone has any comments on the draft NHS Canterbury and Coastal CCG End of Life Strategy they are encouraged to email the CCG: c4.ccg@nhs.net

The Latest for the Saatchi Bill

‘WRITTEN ANSWER’ BY DANIEL POULTER MP ON MEDICAL INNOVATION BILL

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Daniel Poulter, The Parliamentary Under-Secretary of State for Health, has replied to a written answer from Jim Fitzpatrick MP (Poplar and Limehouse, Labour) on the Medical Innovation Bill.

Feedback on the Bill to date has already led to excellent suggestions – such as an open database of innovation, to be developed and hosted by Oxford University.

We look forward to the Government amendments.

Read the question and answer below and here in Hansard.

Jim Fitzpatrick (Poplar and Limehouse, Labour): To ask the Secretary of State for Health with reference to the written statement of 22 November 2014, Official Report, column 65WS, on the Medical Innovation (No. 2) Bill, when he plans to bring forward legislative proposals to remove barriers to medical innovation, along the lines set out in that statement.

Daniel Poulter (The Parliamentary Under-Secretary of State for Health; Central Suffolk and North Ipswich, Conservative)
My noble Friend Lord Saatchi has reintroduced the Medical Innovation Bill in the current parliamentary session as a private peer’s Bill, which had its second reading on 27 June. The Government is supportive of the principles of this Bill, but believes it is necessary to amend the Bill to ensure it does not:

put patients at risk;

deter good and responsible innovation;

place an undue bureaucratic burden on the national health service; or

expose doctors to a risk of additional liabilities.

The Bill will proceed through Parliament in the usual way.

Hansard source (Citation: HC Deb, 21 July 2014, c999W)

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