Minggu, 14 Juli 2013

Home Is Where The Heart Is

I have been giving quick updates along the cruise of where we went and how I felt.  It is the first time we have come home to nice weather and am I grateful, even though I am full of cold.
 
Unfortunately while away the news of new people being diagnosed is still happening, of course I still logged onto face book when I could, not that our signal was great.  If in a hotel you are fine, when on a floating hotel - well its just unstable.
 
Trying to email wasn't easy and my ipad isn't my favourite of typing tools, how people think we could go from computers or laptops to these little tablets is beyond me.
 
My stomach I am sure is not down to food intake, although I now weigh 10 stone, (140 lbs) I can't understand how.  I ate no sweets, little food, no bread or potato and still this stomach is increasing.  I half wonder whether the docs would be honest and say if  I was carrying fluid in my abdomen.  I even went to see a personal trainer for a session.  My God, he was tough, and I realised how unfit I have become.  I used to go to the gym regularly, in fact the summer I was diagnosed I was at the gym 3 mornings a week at least.  I have to say that I did need the weight on my whole body, which has filled back out nicely but my tummy could be the size of hubby's!
 
Which reminds me, he has agreed to try and lose that stomach too, although he doesn't stop eating until he is full!
 
We have seen some beautiful places on this cruise, Croatia is a place I would love to revisit.  Ok we weren't the tourists that go chasing around looking at museums or relics but each day we did get off the boat, apart from Igoumenitsa, we visited this before - so stayed on the boat.
 
The first couple of days I honestly was a bear with a bad head, those smoking tablets seemed to take ages to get out of my system, then with my back etc but we settled into the routine of getting up, showering, breakfast, a good walk, back to the boat and an afternoon on deck for some sun.  Some days we stayed out till 6 and ate late other times went down about 5.30.  We didn't clock watch once we got into the swing of things.
 
For us with meso I honestly think cruising is the way to go, we see different places without having to pack and unpack, food is plentiful and full of choice, plenty of help if needed and a doctor always on board.  Although our snags were air conditioning that we couldn't turn off.  My throat was dry every morning and I did have one breathing panic attack.
 
My ribs certainly felt the benefit of the heat, those bones were so well behaved but I fear the right side of my lung is starting to feel the growth of the meso or rather my brain has realised I have meso in the right side.  I did suffer some odd pains and some nipping sensations.  It made me worry about next year as I really want to do this again in 2014, not just for me but hopefully meet up with those we have cruised with before.  Its a great way to holiday with people who you don't know as you don't need to spend time with each other every day or night. 
 
We did meet some fab people again but also some that were quite rude.  Hubby and I always smile and say good morning to each and every person, some just looked right through you.  There were a couple on board that were always bragging about what they had and what they spent, I noticed this annoyed quite a few others.  When I was asked about them I just said if they need to brag then they are trying too hard.  This time we made friends with two ex pats, Ann and Ashley who both had heard of our Lou and thought Bernie Banton the best thing that could happen in the world of Asbestos and lawyers. 

A red hot day again
 

We also met a couple of Australians from Melbourne, it turns out one was an ex heavy weight boxer and now an attorney, Bernie the Attorney is his nick name.  What a wonderful story teller he was.  Each afternoon we would pop up to the top deck and chat with hubby and I about boxing and of course, being men, the cricket and rugby!
 
I am waiting to here back from the back guy, hopefully I will see him Tuesday night and finish off the treatment he started.  My leg still has some white noise and the pressure on my bladder and bowel still needs fixing.  So busy times ahead, can't believe it but in another 7 weeks we will be doing it all again.  I wish we could do a cruise once every 3 months but once September is over I guess the med isn't the place to cruise around and I can't fly any further.  Which reminds me, I have got that heaviness in my chest again on a morning, not nice but it was there throughout the holiday.
 
I know I shouldn't complain, I'm alive and able to do these things, on a different note my Mother In Law isn't getting anywhere with her diagnosis.  The hospital in Hull have totally screwed it up, sent her to see a dermatologist instead of an oncologist!!!  Her CT Scan results haven't been issued to the right person, she isn't sure whether she has a cyst on the ovary or cancer.  Fancy they called her in and told her she had cancer, she was on her own at the time, now they are messing her around.  I have told her to keep records of everything as I will be writing a letter of complaint.  I think I mentioned at someone asked about meso and hubby shut the conversation down, I truly wish he would wake up to cancer and talk about it.  If his mother does have it then things will change, she will talk to him about it everyday.  I find it difficult to have a conversation with him once every three months!
 
My heart at the moment is with Lou in Oz, her results haven't come back great and chances of further treatment don't look good.  Lou and I are in a similar position, although Lou had peritoneal meso first. 
 
I have been out of touch with Action Day but I do hope plenty of people attended the get togethers and found information given helpful in their own fight against mesothelioma.  I was slightly hurt that only 12 books were purchased from Gateshead's Day, as I was told not many people like vampires, maybe I should have described the book in a different way and the vampire side of things is just a organisation hunting down naughty people!  Anyway I guess it still puts something into the research box, just not a lot. 
 
I promised Michael and Margaret, a couple of Brits who were friends with Bernie and crowd, that I would take the 911 out as soon as I got home.  So if you read this you two,  I took it for a spin today then came back and washed it, it is now a gleaming red again instead of white\black and hints of red.  Yes the birds around our drive are naughty!  Bear came to investigate so ended up under the hosepipe too, he usually enjoys being soaked but today we just stood and looked at me with those big eyes and asked why are you doing this?
 
On that note, time to end this extremely long blog.  I guess I have missed writing my thoughts.  Its back to work tomorrow, something I am not relishing the thought of.  I haven't sat for a long period in a chair so hopefully my back doesn't go back over.  Michael has had surgery on his, I doubt I would want to go through that.
 
One last note, I have a friend in the meso circle who's father has Sarcomatoid type, if anyone reading this has experience with this type of meso can you please email me at jan@jansjourney.co.uk and let me know whatever you can so I can forward the info.  Thank you on her behalf.
 
 
 
 

0 komentar

Poskan Komentar