October 22, 2012 § 4 Comments
So today . . . well I’m glad that’s another one out of the way – even the smell of walking into the hospital this morning started to make me feel ill. I think it is all the smells I am starting to associate with illness and chemotherapy. I keep thinking about this time last year when I kept thinking about all the things I had to look forward to with work, travel, relationships etc – how wrong could I have been? I actually do find it hard to think how wrong I could have been – makes me wonder about my own judgement sometimes.
Anyway, the chemo – feel quite sick this afternoon and very tired. I also think I sort of ‘worked myself up’ for this one – anticipating that it would be a bit more difficult. The nurses are all so lovely and supportive and have explained that it is just the build up of the chemo in my system. They have assured me though that it is really good for the cancer, ie it kills it !!!! I’m hoping it has and that it won’t come back – don’t want to do this again. The funny thing about the cancer I have is that it shows signs of both slow and fast growing cancer types so until we get through the chemo and subsequent tests I don’t think I will really know where I stand. And then, assuming I go into remission, the next 18 to 24 months will be important in terms of monitoring how things progress. Hopefully it won’t ever come back !!!!!
So tomorrow the community nurse comes to give me my neulasta and then its predisolone (high dose0 for the next five days – all hopefully for the second last time. At least now there is a light at the end of the tunnel. I’m looking forward to feeling better and getting on with my life. I am hoping that all the good things that I anticipated this time last year, present themselves again.
September 12, 2012 § 16 Comments
The swellings in my neck and throat area, aka the marshmallows, have exacted their revenge and put me in hospital: Thanks for that, light, fluffy, glucose laden sweet , masquerading as some weird anatomical anomaly.
I have to admit to feeling extremely sorry for myself at this moment in time.
I am sitting in a hospital in Newcastle upon Tyne, the RVI. It’s a very nice hospital, with lovely staff, but it’s not home.
Before this whole dermatomyo-shite-is episode I had very little experience of hospitals – they were for those sad, sorry ill people. You know, those people with ‘health problems’ of which I wasn’t one. Since dermatomyositis took over my life, hospitals are part of my rich circle of experience. The smell of them is faintly reassuring. Walking down the corridor feels comfortable. I instantly took to my bed, on which I am now typing this post and settled in.
But it’s still not home. I want to be in my own bed, with my stuff around me.
But at least I am being checked out and looked after. The NHS at its best. I came into the ward and within an hour I’d had a CT scan and thorough body exam by two neurologists. The CT scan results have not been very helpful and I have to now have an ultrasound. But it doesn’t look like lymph nodes, which is good, as I was worried about non Hodgkins which has an association with dermatomyositis (be something if I ended up with the same illness as Suz wouldn’t it).
So now I wait for Ear, Nose and Throat to check me out to see if they have any ideas what the lumps are. I’m a medical mystery. I wish I wasn’t.
Oh and I HATE canullas, hate them, loath them. And I have to keep this one in overnight, arggggggg.
Here it is, if I have to suffer it, you may as well see it, in all its bloody glory (or is that gory):
I’ll update you on the marshmallow mystery once I know what’s going on. If only Scooby Doo was here.
August 29, 2012 § 4 Comments
Her first day was more of an ‘Introduction to Chemo’ or’ Beginners Guide to Chemo’ or even, ‘Chemo for Dummies’ – now there’s a book that needs to be written. So it wasnt too bad. A few hours of being hooked up to some evil poison and hey, ho, there you go.
But her second day was really the hard stuff, the, ‘Chemo Advanced Course: Hard Core Chemo’. All day hooked up and an evening spent feeling very sick and unable to eat anything but toast – good old toast.
Tomorrow she has to go for an injection to stimulate growth of white blood cells and hopefully she’ll get some respite until the next round.
In the meantime, the fashionista that she is, she has bought a load of lovely hats for when she (temporarily) looses her beautiful golden curly locks – here’s a preview:
August 26, 2012 § 3 Comments
It’s Sunday evening now in OZ and I know that tomorrow is your first day of chemotherapy.
I just wanted to write to say that I’ll be there with you through that, holding your hand, from 10,000 miles away (I’ve got very long arms).
You’ll get through it and there’ll be some more to do, but in the end you’ll come out of this as a well person, ready to take on the world, just like you did before.
You are such a strong and kind and loving woman, I’m so glad we met and just wish I could be there with you tomorrow to hold your hand for real.
I’ll be thinking of you
with love as always
p.s. hope you don’t mind me including this picture of you, that I nicked from Katherine’s Facebook page, but you look so happy: