Started the steroids yesterday and already made a big mistake. I took the first one at 9 am and then somewhere between 6 and 7pm last night. Went to bed at 10.45 and felt ok, a little warm, which is unusual for me as I am always cold these days.
I woke up at 1.15, the end of the bed where I was snuggled too was soaking as was my full body, I got up and dried off, back to bed then it was around 2.45 and it happened again, I got up towelled down and moved further into the bed to the dry sheet area. At 5.15 I was soaked, my heart didn't feel right and I had to wake Gary. He went and got the thermometer, my temp was 35.3, a meso attack, adrenalin was starting to pump through and I couldn't settle. Temapazam to help knock me back out and slow me down. I was back into the I don't think I can do this, its those times at night when you feel bad and there isn't anyone who can answer the questions, yet you know the answers already but it doesn't help.
Anyway I was ok and went into work this morning for a couple of hours. We got to the hospital 15 minutes before I was due and we waited an extra 15 minutes over our time before I was called. The place is dreary, worse than James Cook. Two main rooms where you sit the entire time of infusion, seats face each other with about 3 foot of floor space between, 6 chairs each side. I went in and asked if Gary could come too, they said he could only stay with me while I had the needle. They changed their mind a little later and took us to a side room. Then I got in to trouble, I had elma cream on both hands numbing my veins. This is not allowed here, there nurses will not put chemo into numb veins in case they don't have them insitu and damage the tissue. In the previous infusions (11) I used it on 10 so I can't understand their problem, if the needle wasn't in right the first flush would show the problem.
So I felt my eyes well with tears, I couldn't face the cannula without the cream or they would need to sedate me, she said she couldn't sedate me because I wasn't written up for it! I just wanted her to stick the bloody needle in. I said I couldn't do it, she was more interested in who told me I could use it so she could report them for giving out wrong information. What about me, the patient, who was becoming stressed! I went for a walk around the corridors so I could try and get myself cooled down. I went back, she soaked my arms in hot water then got the cannula in, must admit it didn't hurt as bad as I expected. I have had some terrible experiences over the years and I mean terrible, considering what is to come this bit should be a walk in the park.
Thankfully we took ice in with us, unfortunately the thermoflask wasn't leak proof and soaked everything in my bag! No ice or water brought, even though that was written up on the notes, what would happen if Gary wasn't with me? Two nurses on today only, yet the Monday when no chemo they had 4 nurses on duty and two record nurses, unbelievable. Also my specially made drink for my exploding stomach wasn't there, nor was it written up to be here. Things can't get any worse can they. I am honestly thinking of doing that Cancer at Home again, at least you can speak to your oncologist or a nurse pretty much easier than the NHS. But then I will lose having an NHS oncologist after the event. There is no easy decision when you are battling cancer unless its breast or bowel. There was also another lady in the chemo room, she was on alimta and carbo I asked her if she had meso she said she had a lung cancer but didn't know the name. It can only be meso I wonder if she has been fobbed off. She was around 76 maybe 77, had an operation 2 years ago but the cancer has come back, I couldn't ask anymore as we were moved then.
On our way home we stopped off at the chemist as my back was already itchy, together with a little disturbance in my lady bits and I am peeing for the whole of England. Plus that itchy bum...
Gary read the dairy from when I was last on chemo in 07, he told me he wished he hadn't because he had forgotten the amount of side effects I went through then and he felt helpless then, he doesn't want to feel that way again. I told him that as long as he is by my side he is not helpless and I have already apologised up front for anything that may happen and thanked him for being by my side. It isn't easy for our partners, we may go through it but they have to endure it.
On a better note, Steve has done better on his second dose, I hope that continues. I still can't understand how some can walk through chemo without any problems while others can be so ill and others have nausea and tiredness throughout. It is a strange thing to poison our own bodies but after last night I truly believe I have started on the right day, my meso maybe starting a growing spurt so maybe the chemo may just kill it in its growth pattern.
To everyone else who is currently having chemo, good luck, to those coming through surgery I hope the pain isn't unbearable and those who are stable please please stay that way.
I will probably be updating this regularly, keeping you informed of how chemo affects me, this is after all my own record of this terrible journey that none of us should have to endue.
On a political front, we have to fight for our future generations, more will be diagnosed with this cancer and a lot more will be younger. My brother told me today that my old school was built with asbestos and that was a new school opened in 1970 and my infant junior school was full of asbestos, they are all still standing today.
1 comment:
the joys of fighting on all fronts came back to me with this blog - often we had great nurses and everything went smoothly. Then we got the days when as you say the patient seemed to be bottom of the list, it was all about what form was filled and despite several visits it felt like they had no idea who we were - or even what meso was?
you got through last time- you'll get through this time! after all someone has to keep fighting to tell these overpaid euro prats just what misinformed idiots they are
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