I do hope this week turns out to be better than last, what with Lexi not eating and bleeding from her tail\anus (can't pinpoint the hole for all that fur) and me feeling tired it can only get better.
I had slept in again this weekend and have had a few naps during the week so I was surprised when I couldn't get off last night and was still lying there listening to hubby snoring and the dog panting till 5am this morning. At least I had kept an eye on her from licking her back end but lo and behold when I went to sleep the dog had her nose in and licked the wound open again. I didn't stay awake because of the dog I just couldn't sleep, its been weeks since insomnia has struck and then its usually 3 hours during the night, this was from going to bed till just past 5. At least I rested my limbs although my side is getting increasingly more painful. I have decided it must be the diaphragm settling down and digging in as my mind really doesn't want to go anywhere else.
I was speaking to Dan last night and we were discussing the use of Gemcitabine and Mitomycin, the combination drug used by Prof Vogl and wondered how many people have tried it in Britain. Remember I sent an email to J Steele asking if this could be a drug we could use if Alimta had been tried .. oh still waiting for a reply .. but we need another chemo and we need hope.
Through the meso circle I know that quite a lot of people are getting a raw deal from their oncologists and this maddens me... most feel that they are written off once they have had alimta and then the cancer returns. Are we reading to much into it or is it that the oncologist has nothing to offer therefore doesn't know how to deal with us or is it please leave me alone and let me treat and spend on those who have a better chance of survival. I would hope it isn't the latter because our oncologists are an important member of our team. Yet still we hear of meso sufferers been told its Alimta or nothing, a trial with placebo or nothing .. why aren't they interested in going that extra mile. If you take info in regarding a current drug that you have read about why do they pooh pooh it straight away? Would they honestly feel the same if it was their lives or that of a member of their family.
Do we one day just wake up and say ok I will stop fighting - how do we come to terms with that idea, I know that at some point we won't have a choice but while there are options out there, proven or not, aren't we worth the risk of trying it .. as Dan said what have we got to loose our life?
I guess this article isn't what you want to read on a Monday morning but hopefully will give you food for thought, maybe we should set up a nationwide Meso Sufferers Group, rate our service, oncologists and treatments between ourselves then with our own facts and figures demand what we feel is available within the NHS and what we really should expect. After all didn't the Carers meeting in October say that we need a little more than the usual cancer sufferer.
This brings me back to CT Scans, lets have them 3 monthly - if we can treat all on the NHS whether they have ever paid into it or not then surely those of us who have worked our entire lives and won't be claiming our state pension, can be afforded a scan. This could help buy some sufferers more time as most people don't know the cancer has started to grow again, after all it takes months even years (in my case) before the disease is even found and in most cases they have no symptoms so how does the sufferer know its started again if it can sneak up on you. The scan would ensure that any movement is shown and a treatment can be sourced before the spread is to great where options are limited or don't exist at all.
Now you can get off to work .. once hubby is out of the shower I can go in ensuring Lexi doesn't lick her bum while left to her own devices and get myself off to work too.