Hi and Welcome to Sue's World. I started this blog to keep family and friends informed after being diagnosed with Breast Cancer in February 2009. In March 2011 I was diagnosed with Secondary Breast Cancer. This is about my treatment and how things are going, but mainly to keep them amused with the silly little things that happen to me!!! Read on with interest and please feel free to make any comments, serious or fun, it all helps!!! Sue xx
Thursday, 20 August 2009
Chemo Round 7 Day 8
I can't seem to find banana flavour complan and strawberry is getting on my nerves abit but am drinking it as my appetite isn't great. Had a bit of a turn on Wednesday morning, came over all cold and sweaty and had to lie down. When I felt confident in standing up it was check I had turned off cooker as I had been making my porridge, unlock front door, grab phone and blue book with phone numbers and thermometer, in that order. During this time my sister in law Sandy called and I burst into tears. I would have thought that by round 7 I shouldn't experience new side effects and feeling vunerable was quite shaken by it. I phoned the Beacon Centre (our local cancer day unit) to share this new experience with them. As my temperature was ok I was doing everything right. Lying down and resting till it passed over. To avoid a posse from tearing down the M5 from Worcs I did call my friend Laura who came round and sat with me till I felt calmer, well longer then that really - Thank you Laura.
My temperature started creeping up last night so a call to Ward 9 to confirm I could take paracetamol with my other drugs I had taken was made. I decided not to take a z tab to sleep as I wanted to check my temperature again. I managed to get off to sleep and even though I woke up every 2 hours or so I was able to go back to sleep without struggling. This carried on right through to around midday today so feeling quite chuffed.
Feeling quite tearful and sorry for scaring you Phillipa but thank you and to Caroline for popping round.
I am really excited about our camping holiday in North Devon which starts Saturday with my sister, brother and their families. I am sure fresh sea air and more rest will help and I can always stay in bed all day there as well as I can here :-)
Wednesday, 12 August 2009
Chemo Round 7 Day 1 Penultimate session !!!
I know it hasn't been brilliant I have 6 weeks + before starting to feel better but with Cruella shrinking as well I can honestly say,"Aint been brilliant, it's not nice or pleasant in any way but has all been manageable". Thanks Daria and everyone else for your wonderful comments either by email, text, phone, facebook, face to face, cards, posters and presents. I cannot explain how or why but it all helps in my dark moments and I don't feel so alone.
Have managed a few days work as well which makes me feel useful but I'm not overdoing it but it is good seeing everyone and getting out for a few hours.
Some really good news today, my brother Colin emailed and he has had the ok to join us on our camping holiday in North Devon in 2weeks time and he's got onto the same camp site as us. I'm not sure who's more excited me, him or Holly, rr haven't spoken to Kerian yet :-)
Well still to get some complan in for next week. Drinking lots of water as my throat is dry but ready for next weeks rest..... 3 weeks to go before my last chemo session hooray !!!
Friday, 7 August 2009
Chemo Round 6 Day 16 - Cruella is still shrinking !!!
I have been into work for a few hours Wednesday, few more on Thursday and going in this afternoon after my reflexology. Nothing strenuous, shredding and answering calls on reception. Enjoyed my time spent there and felt useful.
Feeling tired, (No change there) mouth getting back to normal which is a relief, all ready for next weeks chemo ....
Thursday, 30 July 2009
Chemo Round 6 day 9
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
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.
Sue
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.Tuesday, 21 July 2009
Chemo Round 5 Update
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
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 !!
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
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
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 .....
Wednesday, 10 June 2009
Chemo Round 4 Day 7 - Cruella is Shrinking
I suspect now that I will stay on the origional treatment plan of 6 cycles which means only 2 more to go. Won't think about surgery yet still a long way off .
Still feeling incredibly tired and managed a power nap today so feel quite chuffed.
Big smiles all round :-)
Saturday, 6 June 2009
Chemo Round 4 Day 4 am
My reflexlogy yesterday was wonderfull. Felt tearfull on way over , feeling tired and bored with all this now but reminded myself that I had managed 3 rounds , doing 4 at the moment and only 2 left to go (providing Cruella shrinks) and pulled mysellf together. Fell asleep in reflexlogy and a wonderfull session at meditation and felt much better about everything.
Still forgetting to take tablets which is abit annoying but at lease it was only one and not days this time.
Thanks for my messages Kerri amd Leina and will be in touch soon.
Sue xxx
Thursday, 4 June 2009
Chemo Round 4 day 2
Breakfast has stayed down and so far so has lunch so I think I had drank too much water for my body to absorb hence the rejection and it felt the same way about my dinner and the anti sickness tabs didn't stand a chance. Slept well though till gone 7am and still tired today but just just relaxing. So far so good ...
Wednesday, 3 June 2009
Chemo round 4 part 2
Holly doesnt feel to well either so I didn't push for her to go to scouts which has saved me a trip.
Off to bed now will catch up tomorrow
sue
Tuesday, 2 June 2009
Chemo round 4 Day 1
I think Cruella is shrinking as I cannot feel her through my bra any more and the Doc had to look hard for her yesterday as well. Fingers crossed that the Ultrasound scan next wednesday confirms the same. That would be great
My friend Bianca is doing the Race for life today at Silverstone. She has never done this before and is purely motivated by what is happening to me even getting her hair shaved when I had to do mine as it was falling out. If you havn't sponsored anyone yet and want to http://www.raceforlifesponsorme.org/biancamcgarry and don't forget to gift aid your donation.
I am going to take the DS and play Suduko today to take my mind off needles. Will be in the new Beacon Centre so not as cramped as previous visits. umm will let you know if this works
Sue xx
Monday, 18 May 2009
Chemo Round 3 Day 12
This morning been awake since gone 5am but feeling ok. Mouth has done well this round and feels normal , no ulcer. Just tiredness and feeling sick so not too bad really. Planning to work again this week around 2 appointments I have but still taking it easy.Got to save my energy for Cornwall next week he he. :-)
Sunday, 10 May 2009
Chemo Round 3 day 5
Have had a lovely weekend starting with Lynne calling in who ended up cooking our tea whilst I had a nap as couldn't stop yawning. I did some aromatherapy massage and I got my crystals out. We both had the best night sleep for a long time but not enough to stop me going back to bed Saturday, after checking if there was any Rhubarb left at our local pick your own and there wasn't. I'm wondering if I'm resting too much as I am not exercising much apart from what I do on the Wii fit (ok walking as well). With that in mind I accepted an invite to my friends dads 70th Birthday party Saturday night. Holly even volunteered to help out with decorating the hall etc. Thanks Laura and Alex, Holly thoroughly enjoyed herself and when we both turned up later in the evening it was Sue Holly and friends enjoying themselves and I lost the Sue who is living with breast cancer.
After a restless night sleep, I carried on this thought of Sue and Holly doing their thing and took us off orienteering. We didn't get lost after finding the starting point and thoroughly enjoyed the walk. Stopped off at a car boot sale on the way back. Holly groaned but happily took part in the purchases we made. Came back had dinner. Nige came round with some shopping. I am useless at asking for help but when Anne put's you in a corner with "We're off to Asda do you want anything?" it works and really appreciated it even if I didnt have the main ingredient for Rhubarb Crumble!!
Every day next week I have an appointment with 2 appts on Friday. Already I am feeling anxiety over it all. Thankfully not having a midday sleep and taking part in some excercise today will induce a good nights sleep. Watch this space...
Thursday, 7 May 2009
Chemo Round 3 part 2 !!
I knew it was going to be a long day Wednesday. Tuesday started off ok. Went to work before going to CAFE group. Had a neck and shoulder massage and some crystal healing before getting to the Hospital for a blood test and pre assessment appointment. Was'nt kept waiting long and was called in to see the Oncology Dr. He asked me what I understood about the Ultra Scan that I had last week. I confirmed that I knew that Cruella had'nt grown but not shrunk either and they may change my drug combination extending my chemo by another 6 weeks. He agreed with this but advised that the decision on changing the drugs would not be made until after cycle 4 and would like to examine Cruella still. I went to the bed and took my top off and before I could take off my bra he asked what I was doing with a rock in there. I was gobsmacked as this was a rose quartz that was placed when I had my crystal healing and couldnt believe I had walked out with it and all had a giggle over it. We touched the subject of surgery as I need to know timings from a practical point. It will be after chemo and likely to be September. He mentioned that I could do with loosing weight for reconstruction but I dont want to know the details yet. This appointment didn't take long, only an hour on the car park.
Decided that I would walk to the hospital Wednesday, got their earlier to look round the new cancer centre that is opening on Monday. Went off to have my chemo, my appt was at 11.30 but took an hour before I even got hooked up. Yes I looked away and cried. I was left for ages before they brought in my drugs. They didnt loose my lunch this time. They were not ready for me and on checking they were not expecting me till 2pm. It was 1.45 pm before I got out the room. As I had another appt at 3 had agreed to meet up with a friend who was with her mother having her first chemo at 2. I loitered till about 2:45pm and carried on chatting in the waiting room with the other people that were there. Then I went off to my counselling appt and more tears flowed. Got out around 4.15 and decided to walk into town and catch a taxi or bus as was knakered but then one of our senior team was leaving the hospital at the same time and gave me a lift home. Bonus !!
Felt absolutely knackered and tearfull when i got in. Holly was not feeling well either. She's been with her Dad the weekend and we got told Wednesday evening that her sister has chicken pox so I think she is fighting that breaking out. Decided only fish and chips would do and that is what we had. I didnt reaslise till this morning that I hadnt taken my anti sickness tablets but wasnt feeling sick or anything.
Didnt sleep well last night. Got Holly home as well today as she's still poorly. Got back to bed around 12 and didnt get up till 2.30pm. Wasnt hungry this morning and didnt eat until I woke up this afternoon. Left most my tea as well but have decided not to take my anti sickness tablets as still not feeling sick. As advised by at the Dr earlier I have started to take Senna now rather then wait to be consitpated.
Also my next Chemo appt is going to be moved from the 27th May to after my holiday in Cornwall, 3rd June. I did say we could come up for the day if they change the date as it was actually on Holly's birthday but the team are happy to let me delay the chemo for a week. I'm chuffed i'm not interrupting our holiday but not chuffed by extending my treatment but then whats another week and lets hope it's not another 6 weeks that will get added if my drugs are changed.
Wednesday, 6 May 2009
Chemo Round 3 – Day 1
Sue ok but not feeling like writing anything much. So you got me here today, on Sue’s behalf, I’ll try and keep it brief.
Ok, Sue went and had a look round the new Cancer Centre today, and was very impressed with it all. I know it sounds wrong, but she’s looking forward to using it.
Bit of a mix up with her Chemo appointment time this week, her card said 11.30, but they had her booked in for 2.30, oops!!, so she ended up being there quite a bit longer than expected, which had not been good for her today as she was already not feeling particularly good.
Whilst waiting for her appointment with the counsellor, Sue met up and chatted with some people that she’d met previously, who are also having treatment.
Sue felt the counselling session went well and has realised that she’s holding onto a lot of stuff and has worked out a programme with the counsellor to help her deal with her issues.
As she left the hospital to walk into town to get a taxi, a member of the senior management team drove past and gave her a much need lift home.
Sue wanted to say that although she’s feeling very weepy, she’s doing ok and not to worry and will be reporting as normal soon.
Rachel x