I had my first ECP of this year today. I rang them before I set off to say I had a bit of a cold and cough. They checked I felt well enough to come and said they would put me in a side room.
The drive was easy as the roads are still clear. It will be a different story next week when the schools are back. I managed to get a disabled bay to park in. This is always useful as I can stay as long as needed. If I have to park on the street I always have the anxiety that I have to be in and out in 3 hours.
It was great to see the lovely nurses at ECP. There are some new members of the team. They seem lovely too. One of them previously worked on Davidson Ward at Kings, so I know her from there.
My treatment was going really well and I was near the end of the cycle. All of a sudden my muscles started to really ache. It was like having cramp in my thighs and arms. It was really painful. Then I started to shiver and next came uncontrollable and violent shaking. I had to press the buzzer for the nurse as I couldn’t really talk.
When the staff came in they were really shocked at the state of me. I’m normally do smiley and upbeat and easy going. This time though I had gone deathly pale. My BP and pulse was up but my temp was only 37.5. They got a doctor and put me on oxygen and gave me some IV paracetamol. It took 30mins for the shaking to stop. After that they took my temp again and it was up to 38.9.
I had cultures taken from my line as well as a peripheral sample. I also had viral swabs taken to confirm what’s going on. They suspect flu because of the high temp and rigor.
I have never experienced anything like that before. It was awful and the pain for those 45 minutes was really intense. The hope is that I can keep my fluids up and take regular paracetamol to keep the temp down. I will be reviewed by the haematologist on Monday and a plan of action will be decided then depending on the results from today’s tests. In the meantime if I feel any worse then have to contact the on-call haematology reg. Fingers crossed that my non existent immune system somehow fights this off and I don’t need any further intervention.
So this weekend it’s lots of crap TV in bed. Shame because I was meant to be singing at Rochester Cathedral tomorrow. I’m gutted that I won’t be with my friends and colleagues at this fairly local event.
This week has been a bit pants in so many respects. I had an eye test and my prescription has changed. I need new glasses. The problem is I need 2 pairs as I also have to have sunglasses which I have to wear for 24 hours following ECP. I shelled out £700 for the glasses a year ago. I can’t afford to keep paying out like this. I have to have an eye test every year because of the GvHD and my mum had some problems too that means her kids all need monitoring. I also only have one eye that works and with my eyes being so dry, it’s likely that things will change more often.
The helpful receptionist at the opticians looked things up for me and said I should qualify for a grant from one of the big cancer charities. I rang the charity and gave over my financial info. They rang me back just before I set off for treatment today and told me I didn’t qualify with them for a grant because of my pension.
So many people don’t see the hidden cost of cancer. I have to wear more clothes than anyone else to keep warm. When my weight went up with steroids I needed to buy more clothes. Now I have the opposite problem. I need the heating on warmer and for longer because of my inability to keep warm. I spend a fortune on fuel for the car as public transport means lots of germs and I’m immunocompromised. I’ve recently had to buy new stacking units for all my medication as I’ve grown out of the drawer I was using. I have to buy soft top socks to stop them digging in due to fluid retention. These of course are much more expensive than ordinary socks. The list is endless really. I’m not accustomed to having to give my financial info over and having to ask for help. Then to find out that the small amount I have coming in takes me over the threshold makes me realise how other people must really need it.
The cancer charity did sign post me to another site that has lists of grant givers and their priorities. She felt I would find someone willing to help. The problem is though, all that takes time and energy. Just now I don’t have that much energy and I have a flu bug to see off.
Fingers crossed I get rid of this bug soon and can get back to making mischief. Send me some prayers, if you’re the praying type, or positive vibes and know that while you are thinking of me, I am thinking of you.
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