Whats it About A Carers View

     

This is a view from a carers point of view.How does meso turn my life upside down.
I am 73 . Mavis and I have been married 51 years and been together for almost 55 years.
 For those that cant say this word or never heard of it. Its pronounced meso theely oma.
It’s a fatal terminal cancer. Caused by direct or indirect contact with asbestos.
We are somewhat at a loss as to exactly where this contact took place. For her father worked in Chatham Dockyard and was in constant contact with asbestos. Likewise I also worked there. So did she catch it from her dad or from me washing my clothes. Or did she catch it along the way elsewhere.We will never know.
Where she contracted it at this point is of little consequence now. We have to live with it for as long as we can. Mavis has to fight this and I must support her every step of the way. This writing is in my small way an acknowledgment that its not only the patient who suffers but the loved ones who care for them.

The other side of the coin.
A view from my side as a carer.
Our 49th Wedding anniversary was supposed to be a good day, a day one should remember with all the other anniversaries. Well it’s easy for me to remember this one.
Mavis had just been to the doctors with severe breathing difficulties. Go home and wait for me to phone you he said. So we waited and the call came. I have secured you a bed in Kent and Canterbury Hospital, so make your way there as soon as you can.
Our friend drove us there because we did not have our own transport, only our Motorhome and to park in the hospital car park with that was no easy task. When we arrived I thanked my friend said I would be staying on for a bit. So I sent him home. After we found the correct ward and were greeted by a nurse, Mavis was quickly found a bed. I remember joking with the nurse, what a way to spend our 49th anniversary I said.
Little did either of us know just what sort of nightmare journey we had just embarked on?. I eventually had to leave her. Back at home the house was quiet and empty except for Louis our dog. I sat and talked to him. I told him mummy would not be home tonight. It turned out to be several nights. After drains had been fitted and biopsies taken and lots of tests. The dreadful day arrived when I was visiting and Mavis said the Doctor tried to talk to me this morning it’s not good news so I asked him to wait until you were here. Ok I said I would tell him I am here.
Eventually he came to the bedside. He said we have the biopsy reports back from your cultures. There are only 2 reasons for your present condition.
One is a lung infection, the other is mesothelioma. We have discounted a lung infection he said. You have mesothelioma. So what’s that we asked him, he said it’s a Terminal Cancer of the lungs. That hit me like a head on crash on a motorway. You said Terminal. Yes he said there is no cure at present. The prognosis is 3 months. He left us. We sat together on the bed. We had 3 months left together. My brain was now in a mess. Soon visiting time was over and the journey home on the bus took forever. I sat staring out of the window; oblivious of the noise the bus load of school kids was making.
That evening was the saddest day of my life. Mavis must be mortified in there now on her own. I was now crying and cursing. Dinner, who wants dinner. I remember I fed Louis but he sensed things were not right. His mummy was still not home and his daddy was in a state. They feel these things. I remember I went to bed. But I couldn’t sleep. I was up and down like a yo-yo.
I got up at 3 am and took Louis for a walk around the beach. The tide was splashing on the sands. But I was crying I could hardly see the sea. Oh God how am I going to live without the most precious thing in my life. I thought in 12 weeks ,life for both of us will be over. 12 weeks that’s all we have.
We were given an appointment to see an oncologist. It was explained that there is no cure and can only offer palliative care. That means go home and make the best of what you have left. However he said other than my cancer I was quite fit and I had no cancer elsewhere. He said if I was interested he could refer me to see someone who may take me on as her patient and offer a life line. Not a cure but an extension to my 3 months. So due to a life belt being thrown to us Mavis was offered an operation called the VACS talcum powder op where the lung is sprayed with talcum. We jumped at this chance and eventually the operation trial was done in Guys in London.. I remember sitting at home .Just how long would this extension be. I was determined that whatever she wanted she got. Next we had radiation and finally Chemo. Chemo was 10 hours a day every 21 days .The Chemo was bad but we had by now passed the dreaded 3 months. We decided that we would make every day count for however long we have together.
We are now in our 18-month since that doctor’s mind numbing news. I wake up every morning and I am so glad when I see her stir, we have another day together. I watch her when she nods off in the chair and when she wakes again. I treasure every single minute we are together. My life has changed since that fateful day. I pretend to myself that it’s all a dream and I will wake up and see its all been a dream. I am in denial. Its my only way of dealing with this. A later scan shows the tumour has shrunk. That result was like winning the lottery. I feel that I have aged so much this past year. I can see it in the mirror I feel it in every bone. But as long as Mavis continues to remain stable then I am a young man again and she is my flower.
I am grateful for every minute we can still have together.
But now however we recently had further results of her scan. The Beast has stirred again. Its grown since the previous scan. Oh God. The delusion I have built around myself to stop me going mad has shattered. We are once more searching and hopeful. We are awaiting a further scan to see just how it’s moved in the last 3 months. But due to Mavis‘s fighting spirit she has found a trial to get on in St. Barts. But we have to wait a month before we know if she is eligible. But if we can’t then another round of chemo is on the cards. Then we get on the merry-go-round of hope fear joy disappointment and fear. But every day is a bonus.

This is a view from a carers point of view.How does meso turn my life upside down.
I am 73 . Mavis and I have been married 51 years and been together for almost 55 years.
For those that cant say this word or never heard of it. Its pronounced meso theely oma.
Its a fatal terminal cancer. Caused by direct or indirect contact with asbestos.
We are somewhat at a loss as to exactly where this contact took place. For her father worked in Chatham Dockyard and was in constant contact with asbestos. Likewise I also worked there. So did she catch it from her dad or from me washing my clothes. Or did she catch it along the way elsewhere.We will never know.
Where she contracted it at this point is of little consequence now. We have to live with it for as long as we can. Mavis has to fight this and I must support her every step of the way. This writing is in my small way an acknowledgment that it’s not only the patient who suffers but the loved ones who care for them.
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An Update is overdue here.

Today 3 April 2015 is  a month   short of 6 years since that fateful day. 3 months the doctor said 13 weeks or 90 days. Basically go home and make the best of what you have left. Since that mind numbing statement we have had up days and down days. Mavis has undergone 4 separate courses of chemo and a trial. Neither  had secured a  long-term stay of execution. The chemo was only a means to slow things down the Trial was cancelled as it shewed no benefits .During this 5 year period mavis became a NHS representative giving talks up and down the country. Joining forces with Lord Satchi in House of Parliament. And assisting in  expanding and now responsible for  social medias mesowarriors. At one of these events she was introduced to Professor  Dean Fennell . He told her of a new trial starting at The Royal Marsden. She contacted them and gained an interview With Professor Bonnio,who offered her one of only 3 places in the  UK for a Drug Trial specifically  for Mesothelioma. After initial Tests and scans and all paperwork were completed the Trial MK 3475 began in June 2014. This  involved first the fitting of a Canuala ready for the infusion. This infusion takes place every 14 days for an undisclosed period. We met the other 2 people on this trial and kept in touch with each others progress. During this past year The other woman on the trial was removed due to no progress. Recently  The man has now also been removed also  because his condition showed no benefit from the drug. At this time mavis has had several CT scans of which the current results continue to show shrinkage. On the last scan she was told that she has  now shown  to have over 60% shrinkage and some tumours have disappeared altogether. She is reported to be the only one in the UK with  this volume of success. The doctors are so excited. But not as excited as we are. We don’t know how this will continue but we are grateful for every additional day.

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