A Diary Of A Mesowarrior Living With #Mesothelioma International Day Of Families


families

Today we say thank you to the family’s that go through so much when their loved ones get that diagnosis of Mesothelioma. Their lives go on hold as they become a carer to a very sick person who is in so much pain and discomfort.

They watch as they go through the talc op and the radiation and then Chemo and all the horror that brings. Their loved one laying in bed sick for days at a time.

The other side of the coin.

This story began in May 2009 when Mavis was rushed into Hospital.
A Month Later In June at Kent and Canterbury Mavis original prognosis for this disease was 3 Months. Just get on with your life we were told.
All 3 months of it.
I can now leap forward a few years because you are all aware what the standard regime for meso is.

UP to May of last year . 2014 We had been fighting mesothelioma for 5 years
Fighting through 4 different Chemo regimes
And 2 phase 1 trials
All unsuccessfully trying to beat Mesothelioma
Now Kent and Canterbury told us there is no more treatment available.
So once again we were back to that old :—
OK go home and get on with your lives.
But By this time Mavis was not in a good place, .And in no fit state to enjoy many things.
She was Unable to walk more than a few paces without breathing problems she was constantly falling over. And was reduced to the use of a walking frame.
She was on her last legs.
It broke my heart to see her reduced to this.
But mentally she was sound and she just refused to give up. She was running her Global mesowariors suport groups on Facebook. A daily blog with over 350.000 views Her web page onestop mesothelioama. She was a NHS patient rep attends many NHS meetings. Is on the end of the phone for anyone looking for help and support. Speaks in the House of Commons On speaking terms with Lords and Politicians. All of which respect her.

During one of her many conferences she was talking to Professor Dean Fennel. Who had become a great friend.
This was a major turning point in this long nightmare. He advised her to go to the Royal Marsden.
There were just 3 places on a trial for mesothelioma on the Keytruda Trial. She was lucky to be offered the last place.
We gratefully accepted this as more or less our last chance
.
The Trial at Royal Marsden has been a fortnightly visit for 50 infusions.
Getting up at 4.30 am I then have to quickly walk the dog up the lane in the dark cold mornings before setting off for the 2 hour fight on the M25. Spending all day there and the fight back home in rush hour It’s usually been a 12-hour day. It has been hard for both of us.
But if this means I can keep hold of Mavis for another day then it is worth every second of those cold dark journeys. And I am certain our dog feels the same bless him.
The Marsden has worked wonders for Mavis but sadly not for the others on her trial. We have Complete Response  . I cannot put into words just what this means to me. And I am so happy to have most of my wife back.

Life has many good things to offer.
Happiness and Health And Love.
But above all for me it has to be the Love for that Special Person that inspires Hope and trust I am lucky to have this in Mavis.
That old saying Seek and ye shall find is proof that you must fight on, there is always hope..
. . ..
My heartfelt thanks and gratitude goes out to ALL Those Doctors and Nurses who have been there for us.
Without them my life would be so different.
It’s now left only to say
Mavis please keep it up Long may you continue this fight.
I need you And So many warriors need you.————-

I have always kept my children and family out of the publicity as they have suffered enough. We often forget the family and what their thoughts are as they travel the roller coaster with us. I see the tears in the eyes when I say, I have cancer, then the smiles when I say ” ITS SHRUNK. !!! Then the tears again when I say “Oh dear I have something to tell you its growing again” 5 times I did this to them. How cruel was that? so now I want them to all settle down and live their lives but I know that every time I go back for a scan every 2 months they will share my Scanexity with me. They will be at work worrying until I can phone and say all clear.

This is the same story through all the Mesowarrior world so many families have gone through hell and back so many going through it now and more in the future. When will all this madness, pain stop.

So a huge hug for all the families on this  International Day for families.

flowers 8

Thank you.

 

 

 

 

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s