Thursday, 24 December 2009
Sunday, 13 December 2009
2nd December is when I saw my oncologist and the radiographer. They examined my new breast and agreed the results were good. The Dr told me probably 5 weeks of radiotherapy and the radiographer told me 4. I have decided to think about 5 so I wont be dissappointed. My appointment for being marked up has already come through for the 5th January and they'll confirm my treatment plan then.
This was my first visit to the Beacon centre since my last chemo in September and it was a good feeling seeing the familiar faces. They recognised me even though Dolly is totally redundant now. One lady on the reception had recognised me on the T.V. and came over and told me she thought it was me and how good it was :-) .
We also decided at my visit to the Breast Care Centre on the 4th Dec that I don't need to have any more fluid drained now. Yippe ! Also one of our local breast care nurses returned my call on a unrelated issue and said she had seen me on T.V. and said how brilliant it was !
I have only cried 3 times in the last fortnight so feel I am coping well. I have been able to start moisturising my new breast ready for the radiotherapy to dry it out. I did struggle with touching my breast all over inititially but eventually got over it so I thought I would push myself one step further and look at it. Looked at my back wound first and thought looks rough but I know it will soften in time. I looked at my breast but not for very long. It wasn't me I thought and I understand why people say it is good but to me it's not my breast and didn't think it was great to look at. I know technically it is great but I struggled to think it fab. I know more work is to take place and my body shape is going to change again but decided wont be looking at it again any time soon.
I have 1 week of work left before I break up for the Christmas festivities. I hope to get my christmas cards done and out next week. Then some baking to do. Some things never change and I feel lucky in the knowledge that I can cope with it. xxxx
Friday, 27 November 2009
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
Sunday, 1 November 2009
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 :-)
Monday, 19 October 2009
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)
Thursday, 15 October 2009
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
Saturday, 10 October 2009
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....
Thursday, 24 September 2009
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...
Tuesday, 15 September 2009
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.....
Friday, 11 September 2009
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
Wednesday, 2 September 2009
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...
Thursday, 20 August 2009
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
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
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
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
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
Tuesday, 21 July 2009
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
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
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
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.
Wednesday, 1 July 2009
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
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
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.
Thursday, 4 June 2009
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
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
Tuesday, 2 June 2009
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
Monday, 18 May 2009
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
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
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
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.
Wednesday, 29 April 2009
Tuesday I found it a real effort to go to the CAFE group but I was motivated by knowing I would feel better for it. When I got back I had a card in the post from Rachel of the painting we saw in the Birmingham Museum January of Monte Civetta from Lake Alleghe by Elija Walton. This made me estatic as when I use meditation and mountains are mentioned this is what I was visulising before I had even seen it. The painiting in the museum is one awsome sight.
I had a Ultra sound scan Wednesday and Cruella hasn't grown but hasn't shrunk either. Will know more on Tuesday when I go for my blood test and pre assement appointment as to what changes may be made. Either change of drugs or surgery brought forward. I can't deal with the surgery details at the moment only the timings for practical reasons.
It was good when I got into work. It is lovely to see everyone and I managed some work as well. A small bit of normality surrounding the Hospital and Dr's appointments. Can tell when I start to feel better as I even bought a bottle of wine on my Asda trip and had a glass (ok 2 ) with dinner. Will have managed 2 and half days this week!
I have a mouth ulcer that is annoying me and is not responding to Anbesol so I am going to ring the Dr's to see if they can prescribe anything stronger. Any ideas welcome.
I am really looking forward to the weekend. Holly is off to her dad's for the weekend but Rachel and Laura are coming down. Saturday we are just staying here and chilling, may get Laura to finish the cleaning patio and mow the lawn. well ok it's worth a try :-) Sunday we are going on a day trip to North Devon so the sun better come out to play.
Hope everyone has a lovely weekend like I'm going to , have a good un
Monday, 27 April 2009
I am sleeping ok now but some mornings I wake at 6am but then I managed to back to sleep Sunday morning and didnt get up till 9am. I am going to back to bed around 11.30 am and getting up around 1:30 - 2pmish. I dont like being in bed when Holly comes home from school.
Kerri came down from Worcester Saturday afternoon, laden with all things healthy (including Red wine as in small doses...) We also went into town and I bought another beanie hat and some more scarves. Kerri also bought me a lovely hat which I wore Sunday afternoon when I took Holly to her St Georges day parade with the Scout and Guide movement. We finished off the evening with a spot of Wii fit , and a chinese takeaway with Vern who popped in on his way back to Brackly from Minehead.
Today I was awake at 6am so started reading a book kerri brought with her called The Breast Cancer Book which i am finding very interesting. I have a similar outlook and humour as the author. Holly came in and joined me around 7.15am so we chatted for a while which was lovely. I had said to her I might not be up and she seemed pleased I was awake but at least didn't insist I take her to school.
My nose keeps spotting blood or clear liquid, my right cheek has a red patch on it with some spot type lumps and I felt better after my mid morning nap. I am managing to sleep without Z tabs which I feel better about. I am starting to remember my dreams at the moment, they had been quite for a while now but have started up again so will start to write them down.
All in all round 2 again was managable, more tired from day 9. I understand my bloods are at their lowest but was amazed at the difference and how quickly the changes were. I had been ravenous from Sunday , then Friday morning woke up feeling great and within 2 hours I had lost my appetite, nose bleeds, tearfullness and more tired. How quickly it all changed was frightning on it's own.
I am preparing to work this week and already arranging some holistic care for diffusing the anxiety and trauma of blood tests and chemo next week. Time flies...
Wednesday, 22 April 2009
On Monday I started an experiment. I have shaved my legs and we are going to see how quickly the hair grows back. Today is Wednesday and still no stubble. I have had to trim my finger nails and my hair on my head is still falling out so this doesn't make too much sense. Scientists out there answers on a postcard please... .
Tuesday at the CAFE group I had a foot massage and some reiki again. Always come away feeling relaxed. Popped into work quickly after lunch and explaining how meditation and Rekie works really well for me, Sara asked if I stayed quiet enough for meditation , have to admit i do surpise myself sometimes :-)
This morning started out with the Marmite jar jumping out at Holly and smashing everywhere. Luckily she didn't hurt herself and her stomach ache went away. Finished off today being at the cimema to see 17 Again.
Good news received about Colin, he is having limited side effects on his HD IL-2 treatment he started on Monday at The Christie in Manchester for his cancer. I am so relieved although I do appreciate like myself these are early days. Good news all the same.
The weird feeling in my mouth has disappeared, the smelly eruptions are still happening, still feeling tired and incredibly hungry and looks like I shall win the title for the first in our family to be bald...
Monday, 20 April 2009
Holly came back Friday, she’d had a fabulous time with her dad and family. She was really happy, took her younger sister and brother into her room for some snatched play time. She looked away initially when I changed to my wig but then couldn’t stop her playing with the scarves on my head. We had a good chat and watched a DVD before Pat & Co arrived for the weekend. I decided to stay at home Saturday as was tired. Holly went out with the rest of them to Combe Martin and had a lovely day. Spent Sunday morning out at Chothlestone Hill where we found the horses. I could have stayed there all day although I couldn’t believe how hungry I got. I couldn’t wait for my dinner when I got home and ate a load of crap then a big pate of Sunday dinner on top. I was starving. This led to a 2 hour or more marathon sleep so didn’t do DVD with Holly.
When Holly went to bed I had the old “I’m no feeling too well”. Anxiety about going to school the next day. Normally I would let her get in bed with me but I have such smelly eruptions at the moment she agreed to go to her own bed.
This morning she was no better, managed to get her to bring us up both a slice of toast and me a cup of Lemon Green Tea and there we were having breakfast in bed. I encouraged her to eat her toast and by the time I had had a shower and got ready for my Dr’s appt, she was still crying and her friends turned up at the door to walk to school with her. This usually stops the visual display of her not being well, but I still walked up to school with them sporting my beanie hat and scarf and had a word with Mr J. She came back happy but still poorly. Chirpy enough to tell me about her friend at school finding my blog, chirpy enough to check that I had worn my wig when her other friend had seen me in Asda, chirpy enough to give me a manicure and pedicure outside in the garden and show me her skipping skills, chirpy enough to go swimming….... umm apart from balding head, C&D, weird feeling in my mouth, anxiety about the unknown, almost normal…...