Wednesday, 1 July 2009

Chemo Round 5

I know I haven't been updating the blog recently and sorry to those folks who rely on this to see how I am doing. The last 3 weeks have gone really quickly. Yes I have had a 4 week cycle again as Holly and I were invited to London for a wedding and also took the opportunity to catch up with some lovely friends.
An additional side effect of a burning sensation in my mouth added to the usual tiredness and changes in my bowel movements but again I have really breezed through round 4. Even went into work for over a week as well. Took time out in Torquay for enforced rest whilst Holly was on a school trip and made me realised how much I am NOT resting. Ooh no surprise there then :-)

So Monday I was buzzing. I had a faboulous weekend and gave myself 3 things to do when I have recovered from Chemo and my concentration levels increase. My pre assesment appt would confirm only 2 more cycles left and I was going to book our ferry and campsite to France for the end of the Summer. Nope this was all taken away from me Tues morning and I was gutted.
It started off wrong by me thinking I was 20 minutes late for my appointment when in fact i was 1 hour 10 mins early. Wrang work then settled down. Clinic was running late and I was seen just before 12pm by the Specialist Chemo Nurse. My bloods ticked all the boxes, side effects managable, she checked my mouth which had cleared up all ready to go for chemo. I have a concern about my short term memory and after disccussing this with her she felt it best to see the Dr and off she went. Dr arrvied with my notes as I havent had the offical results of my ultrasound scan . Cruella has reduced from 31mm to 21mm :-) . Repeated my earlier conversation on my concerns and Dr reassured me that this was common however would book me a CT Scan on my Brain. Also she had some news on my Treatment plan and that due to my age and origional size of Tumour that they have decided to change my drugs from FEC to Docetaxel (Taxotere). This is to increase the schrinkage for a cleaner masectomy. oh and yes that there would be 4 more courses starting the next day. She went to get an information leaflet for me to read and also made it clear that I didnt have to change but this would following NICE guidlings and positive results on other patients. I couldnt hold it in I cried. Additional side effects to be warned about are fluid retention particular in the feet, tingling in the fingers and muscle ache. I felt so dissappointed and we went through my chemo planner and happy to move the last chemo cycle to accomodate holiday plans. Off I went , got to work for 1pmish after scraping the side of Bluebell on the post. I was desperate for my refreshing cold sparkly drink so went to pop across the road mut Margie could see I was still traumatised and came with me to the stairs and off I went again. I hadn't had a trauma for ages but soon calmed down and reassured her I wanted to attend the pm meeting with my new team and was desperate for food and drink.
Before I left for home Kath turned round and sasked if I wanted her to come with me wednesday as there were still some clarity required and also pointout that the mornings events hadn't been handled well as I had no idea I was going to discuss a change of treatment and should have had someone with me. I accepted her offer of help. (Dont faint) and Kath called 9am and after a chat off we went.
First plan was to speak to the Breast Care Nusre - non available or Consultants so we went to the Beacon Day Centre (new oncology centre) and advised the Nurse what had happed and I need further clarity from Consultant before proceeding with the Chemo. Thankfully we were able to see the same Dr who not only apologised but advised she complained to her manager about yesterday's event. Not just me they had too busy a clinic and she felt she couldn't do her job the way she would have liked. We went through the treatment plan again and Kath also pointed out that being a single parent this impacts on my home life in terms of arranging support and taking this plan into September where Holly starts big school and yes holidays can always be rearranged but there would be dissappointment not just for me. We also agreed that in future I would not come to my Pre Assesment Appointments by myself. I have had Breast Care nurse before this didn't happen. Dr suggested we go and have a think and chat and come back and let the Nurse know what we had decided.
We did do this and discussed the other options and I felt comfortable taking the opportunity of changing the drugs. I felt I had now reviewed the choice I had and not rushed into things. Showed Kath where she could find me later, and got settled into be hooked and drugged up.
Firstly I had to have a steriod injection and left for half an hour - oh joy. Ray & Denise were there fromn the CAFE support group I go to and the lady I was waiting with yesterday the time flew. then my drugs finally arrived and the infusion started, Nurse Lorna handed me the buzzer in case I needed anything. This was new, they had never done that before. Well 10 minutes in and I could feel heat moving up to my face from my neck and I was not able to breath properly. Initialy I thought I was imagining it as I knew I was still traumatised as I call it. Ray called over , are you alright no i don't think I am. Have you pressed your orange button. No but did. Lorna came back along with 4 other nurses, my tears flowed. They stopped the infusion, pulled curtains round and passed me the oxygen mask. I calmed down and they explained that I had had a reaction to the drug and would have to wait now and take my obs and get the dr to see me. Got injected with someting couldnt rememer what they told me. Blood pressure ok, pulse ok, Dr breezed in looked at me at went out again!! Told this to Lorna and she said that was all she needed to do and that she was restarting my drug infusion but slower and stayed with me. When I had got past the point where I had reacted and all was fine she placed it on the same speed as before . Kath turned up with Karen (work colleague - cancer manager at trust) I started crying again as I told them what had happened. Karen had brought me a beautiful posie of flowers as well.
The rest of the session went by uneventful, Felt really sleepy but I had been injected with piriton, I thanked Ray for making me realise I wasn't imagining the reaction I was having. After getting my next appointments sorted I was about to call Kath and she turned up to take me home. What a day and it wasn't over.
Holly, bitterly dissappointed that I have decided we are not going to France ( KIDS !!) and asked where in this country would she like to go, decided to take herself off to the library to get the next book in the series she is reading, came back in tears as she had met a couple of school friends and the lad through a ball at her but it hit the back of her head and not being a soft ball was a hard ball. So I had to be nurse for a bit :-) She's ok now , a lump has developed and she can take this up with Jake today at school.
I have had a good night sleep waking up before 6am and feel quite chipper. Watch this space .....


  1. The shrinkage is great news, and they must be confident that you'll respond well to the new drugs too if they're getting you to change. Doesn't sound like they handled the whole change very well though, what a rollercoaster, eh? Looking forward to next weekend, and ask Holly if she accepts Haribo as payment for dogwalking?

    Take care, see you soon xx

  2. Concern with short term memory?? You're blonde, always have been, always will be!
    Sounds like you've been through the mill a bit and I'm glad that you have people down there looking after you - thank you Kath. Keep focusing on the positive - Cruella is shrinking, and she will be defeated. Looking forward to seeing you next weekend for a big hug and an even bigger glass of vino, all being well. For medicinal purposes only mind xxx