Thursday, 30 July 2009

Chemo Round 6 day 9

My bloods have definitely dropped. Cry at the slightest thing and I am so tired. Doesn't help with an inflamed skin tag guarding my bowel entrance but Dr has prescribed Naproxen so have fingers crossed.
As I am not well enough to drive I hitched a lift to Cheltenham station with Colin and Sandra as Sandra had got Colin an appointment there today. I stayed in bed all afternoon, went to the Docs for my drugs, tried to eat and went back to bed. I feel so exhausted. Holly's been out shopping in Street with the Bebbingtons. Thanks guys.
I have just had an update from Colin. He has had his first of 5 doses of radiotherapy today at Cheltenham. This is good and well done Sandra for not accepting the 1st appt of next Wednesday :-)

Tuesday, 28 July 2009

Chemo Round 6 Day 7

Side effects has not been severe as last time however they have been present. Muscle ache and mouth being sore are the worst. Constantly using the mouthwash since last week has helped and ibuprofen are keeping things at bay.

For those of you who know my brother Colin and are aware that he has 2ndry kidney cancer in his lungs, sadly more nodules have been discovered in his brain after a scan. I am in Worcester at the moment but thankfully he now has an appointment with specialist on Thursday in Cheltenham. Providing I can grab a good nights sleep and ensure i am ok I hope to go home soon now. Whilst i know i have to look after myself i couldnt leave until the appointment got confirmed which it did today.


Thursday, 23 July 2009

Chemo Round 6 Day 2

Yesterday's chemo went through without any hitches this time. I suspect this was because they have reduced the dosage by 10% to ease the severe side effects I had last time. Slept through the night with the help of a z tab but had to be done. Feel tired today still so just chilling.
Pat have uploaded a picture just for you taken at the end of June with me wearing Dolly. I look really well apart from the bags under my eyes and it's quite deceptive as I don't feel as well as I look. I delayed my chemo for a week to go to London for Leina's brothers wedding and met up with Cathy & Polly on the Sunday. Had a fabulous weekend which has broke up the recent routines of needles, scans and such like. I'll place one with my bandana on next blog.
Going to Hereford the weekend to relax with Leina and Paul can't wait and fingers crossed for minimilistic side effects that are due to start Tuesday -but am all prepared !!

Tuesday, 21 July 2009

Chemo Round 5 Update

Had pre assessment today and bloods are ok to proceed with round 6 tomorrow. The breast care nurse appeared for my appointment today ummm.... Due to the severe side effects I experienced they are going to reduce the dosage by 10% and all systems go for tomorrow. I have ice, ice cream, drugs, straws, tinned soup and mouth wash which I have already started to take. Any change I have been told to phone in no matter how trivial apart from if I stubb my toe of course. I should be more aware this time I suppose and I've made it clear I do not want to go to MAU again so fingers crossed.

I have ultra sound scan 5th August, pre assessment for round 7 11th August and first meeting with surgeon on 13th August to discuss surgery options. All go at the moment.

Monday, 13 July 2009

Chemo Round 5 Day 13

Last Sunday I weighed 13st 2lb. This morning I was 12st 8lb. There has to be a plus side.
I got worse before I got better and because I didn't want to eat or drink much I didn't want to get out of bed either. Crushed ice (cheers Wendy ) before food helped and ice cream.
Unbeknown to me, Lynne was not happy leaving me on Friday so had confirmed my current state of health to my sis and picked her and Laura up from train station Friday morning.

Rachel took charge, phoned Dr again, applyed for Mobility badge for car, booked campsite for August holiday and took me off to hospital for brain scan. I was so glad she was here. Being hungry and thirsty because you don't want to eat is ok but when you can't because of scan is worse. I just started crying again in waiting room, tired hungry and thirsty. Scan complete and drank water mix of salt and sugar. I couldn't taste a thing. Tea was lovely, Laura made mashed potatoe just for me - Thanks Laura.

Saturday afternoon Kerri and Wendy turned up which was lovely. I did go back to bed for a bit and it was lovely hearing all the laughter going on as the Wii Fit was put through it's paces.

My temperature started to go up again on later on but fully armed with Paracetamol soon had this back under control and downed some food. Ate more as i was picking so that worked out well thanks Kerri and Wendy :-)

I am starting to feel better now, my mouth still hurts but is starting to heal so feel there is an end in sight. The Last 7 days have been the worst since I started chemo and Round 6 is due to start next wednesday. Previously I have been back at work this point in cycle. Today I'm chuffed I got up and ate something!!!

Wednesday, 8 July 2009

Chemo Round 5 day 7 - No Pain no gain !!

All I can say is what a turn around from breezing through managing side effects of the 1st 4 rounds then bang it it me like a brick. Tingly fingers and muscle ache like I've never experienced before started Sunday night. Mouth on fire and hadn't apprecicated my termperature was rising. Lynne took one look at me and was on the phone to the oncology then GP's before taking me to the Medical Admissions Units. This was not a pleasant experience and wont rush to go there again but I will take that up with the hospital. My temperature started to come down after being given paracetamol. Hey we all know that logic but logic went out of the window. I didn't get anything for my mouth until I was about to leave and currently I'm loving porridge!!!
I am feeling loads better then I was , shocked at how ill I dipped to. I have no energy, have to rest after eating porridge !! Lynnes making sure I keep fed and hydrated as because of my mouth i don't want anything. Getting back my sense of humour. Plans for Round 6 have now been laid. Paracetamol, iboprofen, teach Holly to make Porridge and she loved Dinner at the bebbingtons. Thank you guys !!!

Still not sleeping properly yet telling me my organs are still working overtime to detoxify the drugs through my system. My hair groweth is getting stronger which I find bizarre. Born again blonde on her way :-)

Monday, 6 July 2009

Chemo Reaction Update

Hi everyone, well Lynne thought she was gonna have a nice week off visiting Sue! Ha ha, Sue has other ideas!! Ok, well maybe not Sue!

This is just to let you all know that Sue hasn't been feeling very well, she's suffered with some side effects of the new chemo drugs. (Sue will fill you in on the technical details)

Lynne took Sue into Hospital earlier this afternoon as her temperature had shot up and she was feeling more wierd than normal!

As ever, getting her priorities in order, Sue asked me to update the blog to let you all know that she's ok and will be back informing you of all the gory details when she's feeling a bit better.

We'll be in touch very soon to let you all know how its going.

Rachel xx

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 .....