A Diary of a #Mesowarrior Living With Mesothelioma 7 Year Survival


Well the summer has gone and the rain has taken over again. We had a huge spider sheltering by a box. The warmth at the weekend must have bought it out. They are growing very large a round here Image result for big uk house spiders

We had to go to Kent and Canterbury to deliver the Mesothelioma UK Handbook

New mesothelioma handbook now available

Dr-Helen-ClaysonThe new version of the popular JHMRF Mesothelioma Handbook is now available. Written by Dr Helen Clayson, a former GP and hospice Medical Director, who has been involved in the care of people with mesothelioma for over 30 years. Dr Clayson continues to work on research and education concerning asbestos-related diseases – including a training programme in Japan and an asbestosis project in India. She is a co-applicant on a National Institute of Health Research proposal to study the organisation and economics of care for mesothelioma in the UK. The handbook is based on her personal experience and research.

Dr Kate Hill, trustee said, “The JHMRF is pleased to continue to provide useful information to help those affected by mesothelioma. The new handbook has been written by Dr Clayson to provide straightforward information for patients, their families, non-specialist health care professionals and carers. It covers all aspects of the illness including clinical investigations, treatments, psychological and practical issues.”

Hard copies of the handbook can be obtained from The June Hancock Mesothelioma Research Fund by emailing a request tohandbook@junehancockfund.org. Please remember to include your name, address and postcode.

Download a PDF of the JHMRF Mesothelioma Handbook (11.6MB)

Alternatively a flipbook edition of the handbook can be read via ourMesothelioma Handbook page.

I had promised to deliver a box to my CNS and I wanted to see here as she has been on  maternity leave.

toni

We went to New Dover Road P&R and didn’t know they had stopped the hospital bus so had to drive and park in the hospital car park. Luckily we found a space.

The box was heavy but I carried it into the hospital and Toni came round to meet us. As we got to the canteen My Oncologist was there getting a coffee. Lots of smiles and hugs that now completes meeting all my medical team as there was so many at iMIG.

I was busy telling her how I was and she said she has been receiving all the letters from the Marsden. I forgot that.

My Oncologist had to go to Clinic so we had to say bye and we went and sat down. We talked about so much it was great to catch up.

One thing we did talk about When is the right time to talk about the coroner  She wants me to ask a question. When is the right time to tell us about the need of a coroner. It turns out that a GP doesn’t always know and there have been some cases where it was being missed. We as patient or carers have to be told to be prepared. it is in the Macmillan pack but people gloss over that. So I asked the Mesowarriors and they have really been good and told us what they thought and message me. The majority have felt like I did that we need telling when diagnosed. Young people have answered to at least wait until they have come to terms with the disease. So the answer is the CNS should still make her mind up and be guided by the age of the patient and how bad they have the disease.

Involvement of the coroner

Mesothelioma is classed as an industrial disease. This means that, in England and Wales, all deaths from mesothelioma must be referred to the local coroner’s office. The coroner will then decide if a post-mortem examination is required and will hold an inquest. A death certificate can only be issued after the inquest.

This can be a very difficult time for family and loved ones and it really helps to be clear about the process surrounding the inquest. The government has a short guide to coroner services and coroner investigations.

In Northern Ireland, while deaths relating to mesothelioma must be reported to the coroner, an inquest is not mandatory. Usually, after consultation with the GP and family of the person who has died, no further action will be taken.

In Scotland, mesothelioma deaths must be referred to the procurator fiscal. The doctor who reports the death will use a simple form, known as a pro forma, to record details about the health and circumstances of the person who has died. The procurator fiscal will then decide whether a post-mortem is required.

If compensation has already been obtained, a post-mortem will not be required. It is unlikely that your family will need to be interviewed for further information. Clydeside Action on Asbestos has more information.

Once it has all been discussed its like writing you will once done we can relax and carry on living and enjoying life.

Ray took photos on his camera but it didn’t work which made us laugh. We walked around to the Chemotherapy room but I didn’t know any of the staff as they were all new. Things change and I was nervous back in that room as all the memories came flooding back.

So we said good bye and hugged Toni and will see her at meetings as I’m a Patent Rep. We walked past Invicta Ward where I was in 7 years ago exactly I had had my 7 litres of fluid drained and was awaiting for the cells to grow in a culture. My whole journey started from there.

The start of this blog had begun.

 

 

 

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