A Diary Of A Mesowarrior Living With #Mesothelioma Survivor Depression sets in and a Exciting Plan for Amsterdam Conference


I realise I haven’t written an update, but can you believe I have felts so depressed.

I know this time of year as I come up to the anniversary of our darling daughters death, in 1979 I do know I can tell the date by how I feel, but I have been really feeling of down in the dumps.

I have had survivors guilt as I really want more mesowarriors to have the opportunity of drugs. At least to try to see if they could work.

We now have a few going private on this and I know how hard financially that is. I have pushed for the cost of these new drugs to be included in the claims for compensation and that is happening for newly diagnosis, or at least its being talked about.

The winter has seemed so long as the weather has just started to warm up.

I have kept busy and Iv cleaned the Motor Home, after we have neglected it a bit only used it once or twice. But that is going to change as next Tuesday is my last drug day.

But then I read this

Rates of depression and anxiety are very high when treatment ends,” says Dr Michelle Kohn, director of Living Well, a programme that offers emotional and practical support to cancer patients at Leaders in Oncology Care, a private London-based clinic. “Other emotional issues, such as low self-esteem, anger, stress or sleep problems are also widespread.”

On top of this, cancer survivors are often battling with physical and practical challenges, anything from huge financial losses, to the side effects of medication, profound fatigue, a confused-feeling known as “chemo brain”, or lymphoedima (swelling). Their loved ones, meanwhile, might be increasingly baffled as to why they can’t bounce back and make the most of life. “People suffer for years, often in silence, without any real support,” says Kohn. “Life after cancer can actually be very difficult and lonely.”

It does not help, says Devane, that, “the current system is woefully inadequate at supporting the changing nature of cancer survivors”. In the United States, most major cancer units have survivorship programmes where teams of psychologists, nurses, and other specialists offer ongoing information, advice and emotional support to patients when treatment ends. This, of course, is funded by health insurance. In contrast, NHS post-treatment psychological or practical services are limited, to say the least.

The National Cancer Survivorship Initiative (NCSI), a partnership between the Department of Health and Macmillan, was launched in 2008 to help improve the situation but it has a massive job on its hands. According to NCSI research, 60% of cancer survivors have unmet physical or psychological needs; over 33% have problems with close relationships, careers, or have difficulty performing household duties; over 90% have suffered financial losses. Waving these people off with a six-month follow up appointment, is simply not working.

The NCSI is launching a range of programmes that take a more holistic approach to the needs of cancer survivors, for example encouraging physical activity, or helping with issues including work and finance. “It is essential the NHS now implements these solutions,” says Devane. But there is a very long way to go.

The fear that cancer will come back again is huge for me.

My cancer has come back 4 times when being treated with Chemo so I must have a belief that what people say about  Immunotherapy is true and yet that have no proof yet. I’m showing them the way so that puts a lot of strain on me.

I have to believe Im now cancer-free and determined to enjoy life to the full. But still, when I feel unwell the fear sets in and despite so many friends and family I can feel very alone. I sit and think too much. This is how I have felt.

Writing it down it reads like I’m feeling sorry for myself isn’t that selfish.

So actually I’m going through a normal Process so that cheers me up and I’m coming back again. I try to do a job a day like yesterday cleaned the fridge out and today I washed the airing cupboard and a kitchen cupboard out.

We have been out to our fav place at Tankerton and walked Louis along the grass overlooking the beach. The sea was rough and exhilarating. It blew the cobwebs away.

We have been going to the park so this made a change today seeing the wind farm and the sea.

So it’s a case of Pick myself up and start all over again. There are many Warriors fighting the battle and I’m still around to talk to them and be there for them.

yvonne

 

 

 

 

European Asbestos Forum's profile photo

We have a new date: 30 SEPTEMBER & 1 OCTOBER 2016, again at the wonderful NH Grand Hotel Krasnapolsky!
Presiding over the day will be Hans van der Wart, who did a marvelous job of it last year.
It is astonishing how many aspects there are to the main topic: Asbestos & Real Estate. Many of them will be highlighted, explored and compared.

I have been invited to talk in Amsterdam which is exciting.

The European Asbestos Forum announced yesterday

Announcing a new speaker: the lovely Mavis Nye and possibly her husband Ray as well! Mavis Nye is a Meso Warrior and long-time survivor of mesothelioma herself. Mavis will share her story and her wonderfully inspiring medical news with the Forum.

http://www.europeanasbestosforum.org/

The European Asbestos Forum 30 SEPTEMBER & 1 OCTOBER 2016, again at the wonderful NH Grand Hotel Krasnapolsky!
Presiding over the day will be Hans van der Wart, who did a marvelous job of it last year.
It is astonishing how many aspects there are to the main topic: Asbestos & Real Estate. Many of them will be highlighted, explored and compared.

For 2016, the main topic of the EAF conference will be: Asbestos & Buildings. So that is something to plan for and we will be going by Eurostar which is a new for us as we have only ever used the Euro Tunnel Train. Roll on and Roll off so you only use it through the tunnel, this time it will be a 5 hour journey.

 

 

 

 

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