Yesterday started badly, the boiler had stopped working and when we got up the kitchen smelt of car exhaust fumes. My first thoughts were of Bear who insists on sleeping downstairs, I hope he didn't have a rotten headache, but he seemed fine.
We discovered we had ran out of fuel, I thought there would be some safety in the fact that the boiler stopped working, but by the smell I have serious concerns. The Boiler is attached to the outside wall so something is wrong. We borrowed a 100 litres of fuel and tried to ignite the boiler to no avail. In the end we had to call an engineer, he arrived at 2 and left at 5, still no boiler working and even worse an expensive bill to pay. Hopefully we will get an emergency delivery on Monday of 2000 litres and see if it gets the boiler up and running. Needless to say the house is an ice block, even worse our logs are soaking wet so we can't light the open fires in the office or old lounge!
It hasn't helped Gary's mood either, he has been down this last week and I can feel his pain, he feels like everything is going wrong, and not just with me. To put the icing on the cake we got a letter from Dr Beddows telling us cyro isn't a cure and I have to many tumours and it is a waste of time treating them. I don't think she gets the full picture but not being able to explain in plain english what we want I guess she never will. I know she can't take them all out, but taking the largest and most painful ones out gives palliative care as well as slowing down the growth. She also stated that the meso is within the chest wall (My 3rd boob) so is untreatable. How do we ever step forward if they are unwilling to do experimental blasting.
Negativity does nothing for us, both carer and patient alike, it is a stab in the heart. I have been turning my thoughts to those with cancers that are now out of control and wonder how they get through the day. The last line of her letter said "she has had it since 2003" (no one gets the time line right) so does that mean I have had enough of life? I'm only still here because of the actions I have taken to try and kill this damn disease.
I went to buy a new bra the other day, what with losing and regaining weight, my 3rd boob etc, she pushed me into a 32 E, my shape is all wrong. The 32 is tight on my scars, having always worn at least a 34 for space, but I have been wearing the bra in the wrong position so causing more stretching on the muscles. Although the bra is conflicting with the scar the 3rd boob isn't pulling as much so which do I stick with?
Today is going to be fun, I am freezing, its windy and having a house built in the 1800's is a lot colder than the new modern well insulated ones of today. Think I may have to resort to doing housework to get myself hot but then I will end up breathless - such a dilemma we live in.
Decisions have kind of been kind of made in our joint minds, try for the ADAMS trial as its less toxic, but pray I am not a placebo, then if at all possible try for the NGR015 - but I may not be eligible for this if I do the ADAMs trial first. Its also vice-versa if I do this one first I can't do the ADAMS. So there we have it another dilemma, but then I can always have another go at chemo. Just the thought of chemo turns my insides to jelly and makes my knees knock. I spoke to my oncologist on Friday night and he suggests the NGR015 because you are still getting some kind of treatment. I know my next scan will be due end of May but I think I am going to hold back, whats the point of hearing more bad news. Treatment I will aim for starting end of September and make the most of the summer, why be ill if it could be my last summer?
We all know we change our minds from day to day but if I have been slow growing since Sept 09 then another 3 months isn't going to make that much of a difference, considering I didn't get cryo until April 11. Although I could do with a bit of radiotherapy on a spot in my right back - but I can't see that happening can you.
I hope you are all doing well and of course I wish you all stay in remission and these decisions for the future aren't resting on your shoulders.