Sunday, 8 December 2013

The weather has let us down

It was great getting into the car and driving to a shop for a change instead of going off to a hospital.  The shop we visited was in Darlington and I must say the man was very helpful.  I test drove two chairs, both for comfort for me and also for Gary.  I am so pleased I didn't buy from the Internet as Gary noticed a difference in the height of the handles, which if he hadn't tried pushing me he would never have noticed.  So purchased and excited that I can get back out.  We had hoped the weather would be nice today as he promised to take me for a push along the front at Seaton Carew.  Oh well, I have asked to go round Tesco but his face has dropped.  I don't think he realises that even Tesco would give me a lift and I really want to go.  As the day progresses  I will wait and see.

I said something yesterday about how awful it is seeing yourself deteriorate, he told me it was just as bad, if not worse, watching the person you love deteriorate too.  I hadn't thought of his view, only mine here.  The pain in my centre chest is really bad, in bed it seems to be much worse.  During the night, every time I woke up I was in pain, obviously my mind took over, what if the chemo wasn't working on this aggressive tumour and it was growing faster and faster.  Should I request some radiotherapy now to help take the pain out, can I take another 4 weeks of this terrible pain?  

I have lifted my slow release morphine, it has always helped having several spare different dosages in the house.  I think today 200 mg should become baseline and then see if I need breakthrough.  

Apart from sweats again most of yesterday and during the night I seem to be tolerating the chemo really well.  One part of me is worried as I have always believed no pain no gain, but then a fellow sufferer has had good results on Vinerolbine without suffering, I am praying I will have the same.  

I will be reading everything Steve and Mavis will be discussing for treatments over the next few months, the three of us have detailed our journeys, albeit mine isn't  from the beginning, but all of us have travelled this journey, the ups and downs of life, treatments and dealing with terminal cancer.  During the years hope has kept us going, hope that some new Gold Standard that kills these nasty cells has been found.

In my opinion Mesothelioma is so different from regular cancer, it isn't caused by a defect in our genes, our genes or tissue has been poisoned by a fibre, one little fibre!  Yet the destruction one fibre can do is worse than any other thing in the world.  Recently someone said what did it matter if Mesothelioma only killed 16 people in one county per year.  I would love this person to be either struck down with this himself or watch his daughter/wife suffer.  i know that sounds nasty but what he wrote was so untrue.  He reckoned asbestos was safe!  He said people were to blame for suffering from this because health and safety regs were in place, work forces had no idea how dangerous this was.  Would my own father have put my life at risk if he had known?  Would those who worked in it have done the same.

Research is the key for us but I honestly believe they need to look at killing meso in a totally different way, this isn't a normal killer.  In some cases the tumours grow as a solid sheet, I imagine like a fibrous board instead of the baked beans that came out of me.  Trials are important but when you are still healthy do we really want to risk a placebo and receive no treatment?  There needs to be a different way of doing trials so we still have some form of holding back the meso.  

That's my journal for today, I am looking to meeting Linda Reinstein from ADAO on Skype this pm and also chat to my friend Lisa who recently lost Tom to this rotten killer.  Although I am running late this morning as I stayed in bed till nearly 9! 

I hope that you have a good day and if you are a carer you can understand what you loved one is thinking. 

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