6 weeks Post Op

Hi everyone
I'm feeling really fab at the moment as the Dr said I was ok to go back to work Monday, had a good nights sleep last night and have been driving again this week- my independence is coming back. I still have restricted mobility in my arm but that is going to be months before that gets back to normal. Still get tears for no reason but better out then in. I think last night was the suspension of my life whilst dealing with Cruella and getting well again and then this morning I felt great!
I have had 2 trips to see my surgeon in Bristol and he doesn't want to see me again until March. He is extremely pleased with how my new breast is shaping up. My back wound is still moist in the middle but again in time that will change. 2 weeks ago I had 700ml of seroma drained from my back and 4oomls this week so won't be long before that dries up.

Monday this week I attended a Moving Forward seminar in Bristol. Thank you Carl for getting me there and thanks Claire from picking me up from the station and taking me home. This was an event organised by the Breast Care nurses at Bristol. There was a talk on Diet, exercise, Lymphodema, and dressing after a mastectomy. We also had massages by the Therapeutic team from the Red Cross. The whole day was extremely relevant and interesting. Notably meeting other women at different stages of their treatment plans. Some of us were able to give reassurance to a lady having her first chemo session yesterday and I was given reassurance about my radiotherapy treatment from ladies who have already had theirs. I could have done with meeting a similar group after I was given my diagnosis. There's nothing like meeting people who have either recently completed or still traveling the same journey. I didn't feel so alone and whilst we are all different, we were all on the same journey.
Funnily whilst waiting to be taken up the room where the seminar was being held, I was chatting (yes some things never change) about our respective treatment plans and I confirmed I hadn't met many people who had had their chemotherapy before their op and this lady, also called Sue, went onto to say that there was this lady on the T.V. that's had the treatments in the same order as you and was trying to remember the name of the show. I smiled and owned up to it being me :-) - And thank you for my lift to the Station Sue and Sue's husband and keep me posted on how your radiotherapy treatment goes.
Last Friday was a great evening thank you Holly and the friends you roped in to help you give me a birthday party. I am so looking forward to going to work next week. I have an appointment with my oncologist on Tuesday so should know more about my radiotherapy treatment and I also need to get my back drained again. Partial normality coming my way :-). My nails are still ridged and breaking off but my hair has been having a groweth spurt so have started to make Dolly redundant. That may change next week when I go into work but we'll see.
Taking Holly to see New Moon this evening and Saturday we are going to Worcester to have a joint birthday celebration with Kerri. Will also catch up with family and friends whilst I'm there which is always good.

Have a great weekend everyone

Sue

Post Op part 2 !

What a busy bee I have been since I last posted.

Firstly our trip to London for the This Morning interview. Holly and I arrived Monday lunchtime and after being dropped of at our hotel decided to get something to eat and head into Convent Garden for a mouch. It was quite pleasant there was not huge crowds. We walked to Trafalger Square spending some time in the National Art Gallery before making our way to Leicester Square and catching tube back from Picidilly Cricus. Rachel arrived and Kath turned up for dinner as well as she was in London that week staying around the corner. We were driven to the studios in the London morning traffic arriving in plenty of time for my debut T.V. appearance.
For those who didn't get to see this http://www.itv.com/lifestyle/thismorning/more/breastcancerawarenessmonth/

Tracie arrvied on Thursday to take up her role as mine and Holly's Carer. We had a pink friday at work. Rachel and Laura finally turned up, party at Kaths Friday night. Saturday I started to feel in a ummm lets try and not think about Monday mood. Planned a shopping trip for my Farewell boob party. Tracie took Rachel to Hospital, meanwhile Kerri and Wendy turned up so mood lifted. Rachel and Tracie finally returned with a surprise guest. My sister Francis from London. I knew she was up to something and Francis never entered my head !! That was it then. Nno room for the anxious mood and we had a lovely evening with lovely food, drink and company. Sunday a walk up Cothelstone hill cleared the lungs. When everyone departed, I got out the questionnaire that I had agreed to take part in and completed it. Got Holly organised and walked her over to her friends house. Would we like a glass of wine ??? ummm didnt take long to decide on that one. I embarrasingly forgot to make Holly's sandwiches for the next day but Claire wouldn't take no for an answer and provided Holly with her lunch. Thank you Claire and Carl for your kindness. We had a lovely distractive evening. Couldn't bring myself to pack so left that for the morning.
Had a sniffle before I got up. I know I'm in safe hands, I know it's the right thing to do but still feeling mournful about loosing my breast. Time whizzed by and before I knew it I was being brought round and given sips of water before being taken back up to my ward where I was going to be cared for along with 5 other ladies. Tuesday my surgeon examined his handy work and confirmed that he was pleased with the outcome. All I can see is lopsided breasts and my cleavage. I have taken a peak but have decided to leave this for a while. The nurses are angels is all I can say. There were 3 ladies in our bay who had Tracheostomies fitted and this just reminded me of the last time I saw Dave before he passed away last year. So when the tears started, as they do, I didn't know why or who I was crying for. Me Colin or Dave. Thanks to everyone for all my messages, cards flowers Chocolates and visits.
I came round from surgery with 4 drains attached to me where the Seroma fluid was being drained from my back. I went home with 2 and the level of fluid being drained dropped. I couldn't wait to get home and I got to choose Chilli for tea!! During tea Tracie noticed one of the drains had stopped working. We both thought that was good. Later when I went upstairs I realised I was wet underneath my arm. I hadn't felt it as was still numb. Tracie organsied visit from District Nurse and we decided it had dislodged somehow and attempted to repair it. I woke up drenched, after my first full nights sleep in a week. My scheduled D Nurse got onto the BRI and I started to cry as it sounded like they wanted me back up there. It wasn't a bother Tracie reassured me but I just didnt want to go anywhere. End result was the D Nurse was allowed to remove the drain - Hooray only 1 more left which got removed Sunday as hardly anything was coming out. Starting to feel better. Tracie has been brilliant. Never mind have I been doing as I am told. I have been submissive as couldn't do anything anyway or as Tracie put it She is the dominant bitch !!
Retail therapy has helped but had a blip last Wednesday when I went for my follow up appointment in Bristol. My back was drained again, wound checked and dressing changed. All agreed my wound was healing well and the lovely consultant surgeon wanted to know how I was manageing and getting on and then the serious talk about the Pathology results. They were able to confirm the orginal size of Cruella in what they had removed so she's gone. However, of the 10 lymph nodes they removed for examination they confirmed that 4 had cancerous cells passed through them and therefore I was going to be refered for radiotherapy treatment. I always knew this was a probabilty but I really didn't want to hear it. This was going to minimize the risk of local recourance of the same tumour. All I could think about was that C cells had travelled outside my breast. I managed to make it through the rest of my appt. The rest of my treatment can be carried out in Taunton unless I specify otherwise. For practical reasons this is great news and he has met the new reconstruction surgeon that is starting here soon and that I would like him. I didn't even make it out of the hospital before the tears started. Thankfully Tracie was paying more attention then me and reminded me that 6 out of the 10 didn't have c cells which is also good.
Thursday I set about ringing the Breast Care team in Taunton to arrange appointments for my back to be drained and to be measured for a prosthetic breast. After being told the nurses were all in a busy clinic and I was happy for an afternoon call I had a call back within 5 minutes and we arranged an appt for Thursday afternoon this week. Went out to lunch with work collegues and when we got back I had a letter inviting me out for Christmas lunch with the Somerset Breast Cancer Support Group. Didn't know they existed. Friday more retail therapy required and had a productive afternoon out in Wells. When we got home I had a message from the Breast Care team in Bristol, Sorry we missed you on Wednesday, glad to see everything progressing well. I take it you are out which is good, please ring if you need us for anything and if I don't hear from you I will call you back on Monday!
I have had a lovely weekend. Laura came down, Lynne came up, James, Lynnes new bf, came over. Tracie did my make up and we scared the monsters knocking on our door >Big Grin< !! Sunday had a lovely lunch over in Chard with some friends. I felt tearfully tired when I went to bed but I had a good nights sleep and here we are the start of another week where I am gaining more Independence on a daily basis.
Sometimes in the morning before I get out of bed, if I lie still I don't feel any discomfort and for a minute I can pretend that none of this has happened and that it is all a dream and that I am getting up in a mo to cycle to work :-)

Operation Boob Job (pt1)!!

Ok Folks, short and sweet update for you!!

Operation has gone well, no problems and Sue is in recovery recovering!!!

I've left a message with the Staff Nurse passing on all your good wishes etc., and will hopefully get to speak to her sometime tomorrow.

Thats it for now, I'll keep you updated with any news I get.

I know Sue appreciates all your support and good wishes xx

lots of love

Rachel (and Sue)
xxxxxxxxxxxxxx

A huge THANK YOU !!

Thanks to all of you who have made the time to leave messages on my Blog, Facebook and phone. Your comments and experiences that have been shared with me have moved me to tears. I had no idea of what the impact would be of sharing my Blog with the wider audience.

Despite the wonderful support I have had, I have felt a loneliness I can’t describe. I know that I am not the only one on the planet going through this. Sharing my journey has helped eliminate those feelings to a degree. Using my sense of humour and helping other people has been enormously beneficial. Thank you to those who have shared there own experiences with me. I feel privilidged and hope that it has helped you in some way writing as it has helped me reading them.

I am so pleased knowing that my appearance on “This Morning” yesterday has encouraged so many women to check themselves (men shouldn’t be excluded from this either). Something I shall be doing when I have recovered.
Chloe – You know how scary I can be J
Penny (nee Smith) – I remember the name I even remember the house but cannot visualise you. I’m only in Taunton !!!
Angelique –. If you read my earlier post’s when I was on FEC you may find some tips. I was fortunate not to catch anything and I know having children makes that difficult. (Just started having a cough now though). If it’s ok I would also like to ask you questions about your mastectomy.
Ange – Please let me know how you get on. What’s your treatment plan?.
Hayley – I have skimmed through your blog and you are also an amazing young lady and I love the a Tee –shirt!
Jane / Janice / Sue / Kendra – Good luck and keep positive. Let me know your treatment plans are.
Donna – Let me know how you get on fingers crossed it is’nt x

Best of luck to all of us

Sue
Xxx
Suejane.davies@googlemail.com

Op countdown and what a week ahead we've got!!

Countdown started since confirmation of Op date. The 2 studies I am taking part in is as follows.
1. Quality of Life as an aid to decision making in breast reconstruction after mastectomy- filling out questionnaires pre-op, post op, follow ups and some post op Photos.
2. Trial of the effect of Tisseel on donor site seroma formation following latissimus dorsi breast reconstruction - In plain English - Tisseel is Tissue glue, Seroma is the liquid that develops after surgery which has to be drained, Latissimus dorsi is the type of reconstruction I'm having, tissue being brought from my back. This is to study the volume of seroma that is collected after the op between 2 groups. Group 1 normal finish up after surgery pipes and drains. Group 2 using Tissue glue to close the space created by surgery on my back. I won't know which group I will be in until I wake from surgery as the surgeon won't know until they open the envelope before he's starts.
Right, now for my week ahead. Back in March my sister Rachel was fed up with what was and has happened to our family with Cancer. Really not fair with Colin and myself having chemo at the same time in different parts of the country. Late one night, unable to sleep she started to write an email about it all then sent it to the This Morning (ITV) team, including the link to this blog. Forgot all about it, with everything that has been going on, until last Wednesday when she received a phone call from Ellie, a researcher on the show, who had been passed the email and had a look at my blog. She was impressed with my humour and how I'd been dealing with the chemo and everything and wanted to know if I would like to come and talk about my experience and my blog on the show. Rachel called me when I had got home from work and casually asked if I would mind talking about the last 6 months of my life to someone. Of course I wouldn't mind oh dear who else has been diagnosed ? She assured me no one we knew had been diagnosed and it would be infront of a few million people. I didn't get what she meant at all! Confused!!! (I know, doesn't take much) Then at the mention of Phil n Holly, the penny started to drop!!!. She told me about her earlier conversation with Ellie. Through both of our school girl giggles I replied I wouldn't mind at all. Rachel confirmed this had to be run by the producer first but we still kept laughing all evening. Even if this didn't happen I didn't mind as laughter is great therapy!
Thursday, I got a call as arranged from Ellie and she asked me questions about my blog and the last 6 months and asked me if I would like to come down to the studios - all expenses paid to discuss my blog with Phil and Holly. As it is Breast Cancer awareness month with Dr Chris they are doing a feature on this topic. Would I ----oh yes please !!! Would Holly like to come. No she has school and I had already made enquiries for her overnight displacement from home (Evil mom) I did re-think this yesterday and got back to Ellie and she confirmed this was still ok and school have been informed.
So Holly Rachel and myself are off to London on Monday, stay over in a lush hotel and being chauffeured to Studios Tuesday. Other guests that day are Ozzy, Joan Collins and Paloma Faith. Holly is so excited. Never mind Phil and Holly is Ozzy coming with Sharon !!!
Prior to this week my only distraction was my worry over Colin. I felt much better after seeing him last Sunday and he appears to be responding well to his 2 ops this week. Now however my last week at home is well exciting. Following on from our trip to London, Wednesday evening I am having some crystal healing, Thursday Tracie is arriving, Friday we are having a PINK Friday at work, Rachel and Laura are coming down and also going out to an evening BBQ . Saturday Kerri and Wendy are coming down so having a few beers, some lovely food and some more friends calling in as well !! Sunday I think we will go up and see the horses on Cothelstone hill weather permitting of course and chilax as have an early start on Monday!!! No time to fret and using this weekend to shop and pack for London and hospital for me (I really don't know what to wear). Outdoor school trip for Holly. Busy busy busy....

Surgery confirmed after a day at the BRI

Yesterday I had an appointment with the Breast nurse and my surgeon in Bristol to discuss my options after my scan results taken last week. Shouldn't take long i thought and as per ususal nothing turned out as I expected.
When Holly woke up crying as she hadn't slept well I took that as a sign that the day was going to be challanging. I helped her calm down and even took her and her friend to school as her friend had phoned asking if she could get there early.
Driving to Bristol was non eventful, made a mental note to check Fearne Cottons on line black book of dating rules (you never know). I saw that where I could park free all day was now barriered with road works, saw the parking bay free but decided to carry on and turn around so I would be facing the right way home and of course it was all full when I drove back up leaving me no other choice then to use the NCP car park for an appointment that should take no more then 2 hours.
I get to the reception and my breast care nurse is waiting for me. What fantastic service I think. What Lorraine wanted was to say was last weeks scan results were unhelpful and if I didn't mind she had booked me in for a mammogram and ultra sound scan that morning as that department wasn't too busy shouldn't be too long and my consultant and her would wait and have our meeting afterwards. I laughed and said that was fine I hadn't got to worry about parking as in NCP but Lorraine said I shouldn't be long.
When I saw the number of women in the waiting room I didn't share her optimism and there I waited for nearly 3 hours to have 2 scans. The ultrasound scan couldn't find Cruella at all. I didn't get to see the mammogram xrays.

We ruled out a lumpectomy as we can't see anything, ruled out a wide local incision as they would have to take away one third of my breast and not guarantee that it would include Cruella and then have to have another op. So I am having a Mastectomy with an immediate reconstruction taken from the back as that has the best results for re establishing the blood supply to the moved tissue. 6 months later after the breast has settled they will tattoo a nipple and reduce my left breast to match my reconstructed breast. I have also agreed to take part in 2 studies which I will detail in another post.

Desicions made , the next available slot is October 19th. I confirmed that I can accept, then my surgeon leaves as waiting for me has made him nearly 2 hours late for his teaching lecture he was due at but stayed and waited to save me coming up to Bristol again. What can I say - Carling black label advert -

I mention to Lorraine that my feet have swollen up and on checking them she arranges for me to have a blood test whilst I am there. It is 3.30pm before I leave making it a 4 hour visit. When I process my car park ticket and machine confirms £10 please, my eyes start to water so I start to laugh at it all and make my way home...

Chemo R8 D13 Meeting with Nurse Specialist

I still have tingling in my feet and fingers, dry throat and my eyes have started to water. My appetite is not great but finding it's way back. My bum doesn't hurt and that makes a huge difference. Not sure whether it is the knowledge that I have no more chemo but despite all this I feel really great.

I managed a boiled egg with toast and fruit salad for breakfast before making my way to Bristol to meet with my nurse specialist Lorraine. We chatted for a bit before she went through post surgery bra and clothes options and what I would need in hospital. Went through photos of my consultant surgeons work and methods he uses. Some of the pitfalls and post surgery care. I have also been asked if I would like to take part in 2 studies and have the literature to read this week to help me decide.

As for my operation we cannot decide which / how mine will be done until the results of tomorrow's scan has been discussed at their MDT meeting next Wednesday. My appointment is the same day and after today's meeting we are 95% certain I should be able to make a decision and get a surgery date for a few weeks later.

I am getting stronger every day now and looking forward to going into work as well. Having a shopping spree with Holly this weekend and a weekend in Burnahm on Sea with Jennifer and Gail next weekend providing of course I haven't been called in for surgery.....

Chemo round 8 day 9

Thanks for your helpfull comments Gill.
Have started to feel a bit better today. Stayed up this morning to watch a DVD. It has been a hard week really. My Sister in Law Sandra rushed into Hospital Sat early morning. I have never felt so useless knowing I couldn't help with anything. She is home now resting...
My energy levels dropped on Sunday so have mostly been in bed since then. Feet and fingers are very tingly still. It hurts to type or write at the moment. I am using up my complan as don't really want to eat. I started using vaseline on my lips on Sunday and this prevented a crust forming on the corner of my mouth so I feel quite chuffed about that. My tongue is starting to feel normal so will start to taste food better - yippe and yes my bum hurts again...

I had a referral to Bristol Royal Infirmary confirmed on Monday for Wednesday with a surgeon consultant. I don't know what I was thinking of saying i would be ok on the train. Thank you Kath for taking me. It was very informative and I have an appointment with a Nurse Specialist there on Tuesday to go through reconstructions, MRI scan of breast Wednesday and meeting with Surgeon to confirm available options to me on the 23rd September. I'm impressed at the speed this is moving and all i know is that whatever is left of cruella has be operated on by 2nd week in October.
Will keep you posted

Chemo Round 8 Day 1

Final round of chemo administered. Just got the nasty bit now that lasts for 14 daysish before I start to feel better. Tounge already lost it's colour so have started taking the difflam and my taste buds have changed. Already taking stuff to soften the bowel contents. Round 7 days 3 to 8 were spent mostly in bed and on the sofa so here goes..... but for the last time and I have started to take multi vits to help and in addition to the strawberry complan I now have a supply of banana and vanilla - Thanks Kerri for your contribution to this - I love you xx

Feeling a bit evil mannered at the moment. I feel exhusted and tired still which doesn't help. I have made a decision yesterday at my pre-assesment appt that I am not going to go for immediate reconstruction after my masectomy in October. This is mainly because the surgons will not be able to confirm if I will need to have radiotherapy until the standard removal of 4 lymph nodes to examine them for signs of cancerouse cells which is only done during surgery. The radiotherapy will effect the reconstructed breast and knowing my luck I will need it. The benifits will be that I will now be having a smaller operation on October giveing me a speedier recovery. I can choose to have my reconstruction done anytime after 6 months giving me time to restore my fitness levels and research and decide on the options open to me on reconstruction. Also this will all be done in Taunton. Lots of things to think about at the moment...

Chemo Round 7 Day 8

What a week. Started going downhill Sunday really so it has been bed sofa and unavoidable trip to supermarket and post office so far. I feel so tired and I appreciate it is accumulative. My bum is really sore and I am struggling with doing anything other then resting, making food, resting and getting upset about clearing up! Holly's at her dad's this week so cabin fever isn't pleasant.
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 :-)

Chemo Round 7 Day 1 Penultimate session !!!

How Cool is that I feel fab !!!Only one more session left and they cannot surprise me with any more !!!! Have to share a poem my friend Caroline sent me to keep my positivity up - Chemo is fab, chemo is fantastic. Sometimes it feels bad, sometimes drastic, however that little blighter will soon be gone and you will hear me singing this song, Chemo is fab, chemo is fantastic, "Bring it on", "Bring it on".
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 !!!

Chemo Round 6 Day 16 - Cruella is still shrinking !!!

I have had confirmed that Cruella has now shrunk from 21mm at the last ultrasound scan to 15mm. Way to go hey. I am pleased only 2 more chemo sessions to go starting next Wednesday. It is overshadowed by me having an Anal Fissure (tear) which is the cause of great discomfort and I am endeavoring to do all things associated with softening the contents of my bowel. Sometimes it works and sometimes it doesn't. It worked this morning so I am relieved.

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 ....

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 :-)

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.

Sue

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 !!

xx

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.

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!!!

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 :-)

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

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 .....