Tuesday, 29 December 2009

Tues. 29th Dec. 2009 'Thanks & apologies'

I was thinking about my blog this morning, especially yesterdays entry and I suddenly became anxious that it may sound very 'self pitying' to those who follow or read it. So I thought about it for a while and reminded myself of the reason for starting it in 2008, and why I will continue for the time being. It's main purpose is to document the ups and downs however small or seemingly insignificant, from the day of diagnosis to the day I have my last Herceptin.

I know that some of my family read it, including my Sister Patty and my Husband Graham. It can sometimes be worrying for them as I'm often more able to express worries or problems via my blog. I suppose what I'm trying to do is thank those who read my blog and apologise if at times it seems a little negative - it's not meant to be, I just don't want to forget the rough times, so that I can enjoy the good times so much more!

Note: I have photographic evidence too, but have spared readers that experience:-)

Monday, 28 December 2009

Mon. 28th Dec. 2009 'Post Christmas'

I feel like a walking disaster at the moment. Yesterday, my operation sites were very sore and despite a fairly quiet day, I felt really fatigued again. Friend Allan came for dinner and I cooked a piece of pork, roast & mash, plus veg etc. It was all very relaxed, but just before bedtime, I commented to Graham that I felt a bit off balance. We'd just got into bed when I was aware of the fullness and slight disorientation which usually precedes a vertigo attack.

I took some Stemetil immediately and sat very quietly until it wore off enough for me to be able to lay down. I fear Vertigo attacks so much as they make me so ill, but usually I only get one every couple of years often triggered by a build up of stress and increased tinnitus. Fortunately I woke up several hours later and it seemed to have settled.

So this morning I just felt a little spaced and managed to stay in bed till 9a.m. which is really late for me. My Son Joe was coming for dinner, so I laid the fire, but as I put some logs down, I felt a sharp pain in my lower back. Consequently I've been hampered all day and afraid to bend down, pick anything up or sit for too long. See - walking disaster! I blame the fragility of my lower spine on the surgery too, I know how much you get pulled around in there. Anyway, I'm hoping for better things tomorrow.

Note: I got weighed this morning and despite 'over-eating' like everyone else, I still seem to have lost weight. I was 10st 5lb, which means I've now lost 2stone. I'm not complaining at the moment as I know I look quite good, but I hope it's going to stabilise soon.

Sunday, 27 December 2009

Frid. 25th Dec. 'Christmas Day' 2009

Good morning world, it's Christmas Day!!!
I slept reasonably well, but the two surgery sites under my arm did come to life and were too painful to lay on. Both scars are about 4" long, one is quite high up actually on the reconstructed breast and has taken away the bulkiness I could see above the line of my bra strap and under my arm. The other has removed a 'dog ear' line which was visible below my bra strap. I can't actually see the wounds yet as I still have dressings in place. However, my 'Christmas present'... is visible and although it does look a bit 'messy' at the moment, the overall result is pretty amazing.

The day was fantastic, very relaxing and lots of fun. I missed my boys, but I was happy in the knowledge that they were having a good time together and enjoying their presents!

As for other presents, well they were wonderful and I feel so lucky to have such a great family, without who I know I would have a very empty life!

Thurs 24th Dec. 2009 Christmas Eve!


'Roo, Me & Mr Sowman'
Well it really snowed last night and it looks like we'll have the first 'White Christmas' for some time. I wasn't happy this morning as I knew we had to get to Roo and Gor's and the snow is worse over there. Also I was still suffering from effects of the anaesthetic, my brain and legs didn't seem to want to work together.

Despite this, we loaded up and decided to set off mid morning before the snow came again. It was a pretty good journey despite my fears and I enjoyed the scenery in a slightly 'ga ga' state! My scars were beginning to come to life, so I was grateful for the pain killers and diclofenac.

We did have to dig out the drive to get in, but otherwise it wasn't too bad and I felt really happy to be there and to put the last few weeks behind me. It will be so different to last year when I can honestly say I thought I wouldn't see another Christmas, I felt so ill.

Wed. 23rd Dec. 2009 'Snow, Stress & Surgery'

Somehow things seem to have got very complicated this week. I booked my 'Christmas' surgery for today not realising Graham would be out working (singing) and unable to pick me up. Thankfully Pat & Michael stepped in and kindly offered to come for me. The weather hasn't helped, it's been extremely cold and snowy with the possibility of more to come and so I'm stressing about the operation, the Christmas arrangements and getting to Ruth and Gordon's in Ilkley tomorrow!

Arrived at the hospital around 12 noon and after the usual checks & info, walked down to theatre about 2p.m. I agreed nervously to have a general anaesthetic as Mr MJ says there's a little too much to do just under a local.

I did try to warn the anaesthetist (a pretty very young Asian lady) that she may have difficulty finding a decent vein in my hand, but I don't think she was really listening, so I had to endure a couple of failed attempts before commenting that chemotherapy had left m veins a bit like 'old knicker elastic'. Now, the rather burly tattooed assistant who was applying pressure to my lower arm, laughed out loud, but it was obvious that my joke had been lost on her. Fortunately, and to avoid having to scrape me off the ceiling, it was then decided to put a small cannula in for the purposes of getting me off to sleep and then add another one in theatre.

The next thing I remember (which only ever feels like seconds) is waking up, well, trying to. I was really sleepy this time and I kept hearing the nurse say my name, but couldn't be bothered to come round. At 6p.m. I was wheeled back to the ward in a morphine induced dream state, where only the mention of 'staying overnight' really woke me up. The nurse said it could be 9p.m. before I was fit enough to be discharged and I would need to be able to drink and eat something without 'chucking up' . I was beginning to panic, when Pat & Michael appeared at the door and I planned my escape. Two rounds of toast later (only one of which I actually ate) it was decided that I would be able to go home with them - hurrah!

I'd like to say we made a hasty exit, but the truth is I was having to really concentrate on walking in a straight line, like some kind of drunk person. Judging by the looks I got from people as we made our way out, I'm guessing I didn't look too good either!

We made it safely home (in a blizzard) and I am eternally grateful to Sissy Pat & Michael for their love and help. I was making my way back from a toilet visit when Graham came upstairs, he looked at me and said 'oh shit', which I think was a comment on my very white face, so I just curled up in bed and went to sleep - tomorrow's another day, in fact, it's Christmas Eve!

Saturday, 19 December 2009

Sat 19th Dec. 2009 'colonoscopy'

Well we managed to get into York despite the snow and ice. It was -7 when we set off, but we went very slowly. I fell surprisingly ok, despite no solid food for over 24hrs now, perhaps a little weak in the knees. Anyway, I was 'booked in' and shown my room about 10.30 after a short but rather cold wait. The nurse gave me a blue paper gown to wear and a pair or very large navy blue paper pants with a slit at the back - mmm nice! Also a nice dressing gown and a blanket. We went through the usual paperwork and shortly after the Consultant came to explain the procedure and took me through to the theatre.

Naively, I thought it was just going to be a clinical room and a tablet or two. However, I was made comfortable, given nasal oxygen and attached to various monitors. The Consultant then tried (a couple of time) to site the cannula, through which I was given a pain killer and a sedative, which worked almost instantly. It wasn't an unpleasant feeling, which is more than I can say for the actual procedure, which was excruciating at times and even the pain killers didn't prevent me from vocalising my discomfort and nearly breaking the hand of the nurse who did her best to keep me calm and distracted.

Once over, I was taken back to my room on the trolley to sleep for a while, which was quite pleasant. I was given a lovely latte and a sandwhich once I felt like sitting up and I can tell you - a cheese and tomatoe sandwhich has never tasted so good!

The Consultant said that he hadn't seen any abnormalities in the colon, but he has taken some biopsies and I'll see him again in a few weeks.

Friend Alan very kindly came and picked me up from the Hospital as Graham had a booking which we didn't want to cancel. So it's 2.30p.m. and I'm waiting with great excitement for the arrival of Joan, so we can have our 'Strictly Party'. A great end to a fairly traumatic day.

Friday, 18 December 2009

Fri. 18th Dec. 2009 'Hereptin & Citramag'

Finished work on Wednesday after three very busy days. Also started the colonoscopy prep on Wed, which meant two days on a very bland and boring diet (low residue). Herceptin yesterday, which went OK and today it's fluids only plus some delightful stuff called 'Citramag' which has to be taken at specific times. I think I'll be wrecked by Sat night, but I'm determined to enjoy the Strictly Final with Joan.

We woke up to snow this morning, so I got up briefly to make up the first packet of powder. Mixing the boiling water with the powder made me feel as though I was taking part in some 'Magic Show' or 'Macbeth', it has a really dramatic reaction which causes it to hiss loudly, producing a white cloud (good job I followed the instructions and mixed it in a large jug). Anyway, it's one down and one to go. I'm already feeling the effects which are not very pleasant. It's going to be tough 24hrs and I sincerely hope we can get through the snow to York tomorrow, because there's no way I'm repeating this process!

Friday, 11 December 2009

Frid 11th Dec. 2009 'Christmas Shopping'

I feel as all I've done this month is go to appointments, backwards and forwards to York. They're all either necessary or requested, but it did start to get me down this week and having given it some serious thought I decided to cancel the CBT. The thought of going was beginning to add more stress to my overloaded brain, plus having tried to do my 'homework' from the first session, I couldn't see how it was going to help me get my life back on track.

I think also, the fact that I'm now being taken more seriously regarding my stomach problems, has helped me to be able to see some light at the end of the tunnel (that sounds funny knowing that I'm going for a colonoscopy). Joking apart though, if that can be sorted, I'm sure everything else will fall into place.

So, I've called this 'Christmas Shopping' because I've been to order mine today. I had my follow up appointment with Mr MJ, my breast surgeon. He's such a sweetie, with a good sense of humour. We both marvelled at the great job he's done. Surprisingly, he says he can reduce the 'puckering' under my arm, which I thought I would have to live with. Also, in the new year, he will arrange for me to have some fat removed from somewhere (plenty of choice) and injected into the top part of my breast where it has drooped bit. How wonderful is that?

Last but not least, I will be having a new nipple reconstructed on 23rd Dec. - my Christmas present! Happy Christmas Lesley :-)

Sunday, 6 December 2009

Sat 5th Dec. 2009 'Another Nuffield visit'

Was given the opportunity to attend an appointment with the Cons.Gastro-enterologist this morning. Not the best way to spend a Saturday morning, but on the whole probably a more useful option than trying to fight our way through the Christmas crowds in York.

I assumed that it would just be an initial consultation, but following a fairly in depth chat about things I would rather not discuss, the Consultant decided he wanted to do an initial examination. A nurse came in and the curtains were pulled so I could remove the requested clothing. The nurse came back and was struggling to get through the curtains due to furniture, so she went back out and came through where it finished near the wall - 'oh' she said 'I thought I'd use the back entry'! It was at that point I was thankful Graham wasn't with me as we both have the same stupid sense of humour and several options for reply flashed through my head, but I guessed she may not get the joke, so I resisted.

For the record my weight today was 67.7kg which is 7kg less than I used to be. I'm a size 12 now, which in some ways is great. I haven't been a size 12 for over 30yrs, and generally I feel and look good, but I don't want to lose any more weight. I've decided to clear out my wardrobe and start again. This is harder than it sounds because I have some really nice clothes and it's tempting to keep hold of them, but that suggests I may go back to being a size 16 and I don't want that.

Following a rather uncomfortable procedure we talked some more about the significant changes in my bowel habits and he informed me that he wanted to carry out a Colonoscopy to be absolutely certain nothing was being missed. He agrees with my Oncologist opinion and doesn't feel the problem is related to the Herceptin and is worth further investigation. Personally I still think the chemotherapy has triggered some sort of 'irritable bowel' disorder, but I'm happy to go along with his recommendations and if everything is clear, at least we can look at ways of managing the problem.

Thursday, 26 November 2009

Thurs. 26th Nov. 2009 'Herceptin No.10' and CBT


My first CBT session this morning. I have laid in bed a few times this week thinking 'what do I want to get out of this therapy' and guess what his first question was? Actually we laughed about that and I found it fairly easy to talk about all the problems, both physically and mentally, which I feel are holding me back.

It was an interesting hour which highlighted my thoughts, feelings, physical problems and behaviours. Once they were all down on paper we talked through some of them in more depth and how they're all linked, one thing affects the other - if that makes sense. As for what I want from the sessions, well, I want my life back, I want to feel confident and be able to plan ahead without feeling that something will happen to spoil everything.

My Herceptin treatment was much later today - 4.30p.m. It went very smoothly, but the dose had not been altered, so the nurse had to ring the Oncology unit at York for advice. It meant reducing the volume this time by drawing off 13mls from the bag. It has been altered at the Hospital, but has obviously not filtered through to Pharmacy.

Pat and Michael came to keep me company, so the time went much more quickly than usual. Oddly I noticed about an hour after it had finished that my throat hurt when I swallowed and that's got progressively worse, so I don't know if it's the treatment or some kind of 'lurgy' coming on. Oh well, an early night and hopefully a quiet day tomorrow will sort things out.

Friday, 20 November 2009

Frid. 20th Nov. 2009 '...and Finally'

Final appointment of the week was last night. Saw my Oncologist privately at the Nuffield (very posh). It was so different to the appointment I had on the 8th October, very relaxed almost friendly, and with no time limit, so I was able to express some concerns and ask for more detail. I also made it clear that I was a nurse professional and in this instance I felt it had the desired effect.

We discussed my diagnosis, the good, the bad and the ugly - we also discussed the reasons for having Herceptin. Apparently, although I was 'node negative', I had other indicators, such as being HER2 positive, which put me at 'the bad end of a good prognosis' - (makes sense to me).

We went on to discuss the problems I'm having with my bowels. Like me, he's not convinced that these are related to the Herceptin because they're too acute, so I have agreed to a referral with the gastroenterologist. I'm about half way through the Herceptin treatment and he feels it's worth carrying on because of the added protection it will give me, providing it's not responsible for my other problem, so I'll just have to see.

Wednesday, 18 November 2009

Wed. 18th Nov 2009 'Rain, Railways and Rubbish'

Rubbish - that's how I'm feeling today. Stomach started cramping when I was half way to York (on my way for my first physio assessment). I really struggled and only just made it to the Hospital toilets.

The Physio went really well, bearing in mind I was convinced she would think I was just being a wimp. Apparently the muscles under my arm and in my back are very hard and not sliding across each other as they should. They need a little bit of manipulation and some specific exercises, to help them free up. I should only need a couple of sessions and if today was anything to go by, it should feel much better in a few weeks.

I managed to get through the appointment, but had to make another dash before leaving the department. It really is very worrying not knowing why or when this is going to happen as it's not just urgent, it's desperate . I get cold, feel nauseous and my mouth and eyes are dry following a bad episode like today, then I'm wiped out for the rest of the day. I'm seeing my Oncologist privately tomorrow, so maybe he can shed some light on this and numerous other questions I have lined up for him.

I took this week off to re-charge my batteries, but to be honest it's been crap so far. It's rained non stop and my shopping plans have been 'dashed' thanks to our 'useless rail network' which grinds to halt at the slightest problem.

Monday, 16 November 2009

Mon 16th Nov. 2009 'some good news'

Back to the Doctors this morning. No further problems, so we've decided to wait and see if it happens again before thinking about a referral. I'm happy with that and fairly sure it was just an infection. One appointment down and two to go!

Cooked Salmon en croute! for Barry and Sue, it was a success and a good start to my holiday week. Going to Leeds tomorrow for some Christmas shopping and probably some lunch with Roo.

Tuesday, 10 November 2009

Tues. 10th Nov. 2009 ' A 'wee' problem'

Been back to the Doctors this morning. Saturday I noticed some abnormal bleeding when I went for a pee. Fortunately I have 'labstix' and was able to dip stick a sample, only to find it showed Haemoglobin. OK, I thought, what's going on here, bearing in mind I went through the menopause about twelve years ago. I've had a UTI (urinary tract infection) before and that's usually accompanied by urgency, burning, shudders etc., but I don't have any of these, so I'm wondering why. It happened again yesterday, so I booked an appointment for this morning.

I took a sample with me, which my Doctor tested and confirmed that both Haemoglobin and Leukocytes are present, so it's possible there's an infection going on somewhere. I had the option of being 'fast tracked' to urology, or trying antibiotics first, so I chose the latter. I've got another appointment for Monday, so fingers crossed. I'm on holiday next week and now have three appointments to attend, so I don't think we'll be going far. I am however looking forward to a break, just chilling out, doing some Christmas shopping and getting my anxiety levels down a bit.

Saturday, 7 November 2009

Thur. 5th Nov. 2009 Herceptin No9' I think!

Sister Pat came over to keep me company. I thought it would be the male nurse again and he's not very chatty. It can be a long couple of hours if they don't want to talk and he tends to text quite alot. Anyway, as it happens, it was the lovely young lady who came the last time and was so helpful and so interesting to talk to. We all had a good laugh and the time went quickly. Unfortunately they hadn't adjusted my Herceptin dose in time for this treatment, but it will be reduced by the next one.

Nothing else new, except to say that I'm still a bit up and down emotionally, which I find frustrating. I'm feeling quite positive about work today, but that probably won't last.

Tuesday, 3 November 2009

Tues. 3rd Nov. 2009 'Peaks and troughs'

Is it time for Skye yet?
It's been a week since my last blog and until today I actually felt I was making progress. My McMillan Support Nurse has made my CBT referral and she has also referred me to the breast cancer physiotherapy dept. as despite doing exercises since day one, I seem to have hit a brick wall with my arm and range of movement. I've tried stretching it gently, but this just results in the muscle in my back and down my surgery side going into an uncomfortable knot!

I've had a letter from Prof D, my Oncologist inviting me to make a private appointment to discuss the Herceptin treatment and my Herceptin dose has been adjusted to take into account my weight loss. So at least I feel as though I have something to hang on to and people to listen!

I'm not sure what happened today. I do know that I am a little fragile in terms of coping with work issues and I can feel my anxieties rise when too much comes at me, or people, in this instance a Manager and HR, want to 'pass the book'. Whenever there's a tricky situation they seem to want to throw it at the OH Nurse and run a mile. Well, I managed to stay civil with those involved, but I was so angry inside that I could have come home and written my notice.

Physically my stomach hasn't been too bad, but my treatment is due on Thursday, so it will be interesting to see if that has an effect. I currently have a sore mouth and very sore nose, something I also mentioned last week. I could understand it if I was on chemotherapy, but we can't figure out why this is happening?

The pain near my sternum is still there intermittently and I've had a burning pain in my left side along my ribs. I'm sure they're nothing to worry about, but I still do and I guess I'm going to worry about every new pain for the next few years until I get the 'all clear'.

Monday, 26 October 2009

Mon. 26th Nov.2009 'Taking Steps'

Well, it's a year ago this week since I had my lumpectomy and it seems as though everywhere I turn there are reminders of that awful time. I can't actually believe a year has gone by and so much has happened. It would be nice to say I'm out the other side, but sadly it's taken me the last few months to realise that I need help. So today I took the first step in facing my demons as well as getting some practical help to guide me along the path towards acceptance and learning how to cope with a myriad of emotions I now face on a daily basis.

I met with my Cancer Support Nurse today on a very informal basis and we talked for nearly two hours. I had put together two sides of A4 listing all the things I had on my mind, feelings/emotions, physical problems and questions I felt were unanswered. It wasn't easy and I was tearful a couple of times., especially in relation to work and feelings of self worth/confidence.

The outcome of our meeting was very positive, it helped to be able to air some of the more sensitive concerns, both physical and mental. Anyway, the result is that my Herceptin dose will be reviewed, I may go for another private appointment with my own Oncologist and I'm being referred to the Psychotherapists for some Cognitive Behavioural Therapy (CBT) which will help me put things into perspective - hopefully! I also had a painful tender area on the edge of my reconstructed breast examined and they said it's probably just muscle settling.

So, a good but exhausting day, I was emotionally wiped when I got home. I can't honestly say that it's resolved things and I reckon that will take a bit longer, but it's certainly a step in the right direction.

Thursday, 22 October 2009

Thurs. 21st Oct. 2009 'A day to remember'

Jen, me and Graham (Roo taking picture) at Kings Cross Stn.
What a day, in fact what a week. Work wise it's been extremely busy and not without it's stresses. I finished at lunchtime yesterday and then worked from home for a few hours. I had to ring two employees, both of whom I know and both of whom have terminal cancer. I found it extremely difficult and very draining, in fact I had a good cry afterwards.

So today was special, but I have been really nervous about it, worrying that it would all go wrong, the trains would be cancelled, the show would be cancelled etc, etc. It's the 'catastrophising' again and it can almost ruin an experience. Anyway, I'm happy to record that it went without a hitch. We arrived on time, managed the underground and found the 'Victoria Palace' in time to see the most stunning, fantastic show I have ever seen (not that I've seen many).

Billy Elliott is awesome, the sets, the acting, the singing....I cried every time they started dancing, and I think Graham did in places. I reckon I've converted him to musicals, at least live ones. We were shattered when we got back to Kings Cross and I sent a text to Roo, who had also been in London with Jen, having won tickets to Adam and Joe's live gig, only to find they were in the station too, so we were able to have a hug and a laugh about our respective days.

I have to say I'm relieved to be home now as I developed the familiar stomach cramping and sudden need for the loo just before boarding the train and didn't have any tablets - (note to self - "must carry tablets at all times").

Anyway - it was fab to finally see the show and to share it with my husband, who I have to say was the best looking man around - definitely 'a day to remember'.

Friday, 16 October 2009

Frid. 16th Oct. 2009 'Grasp the Nettle'

Jo (the Homecare Nurse) rang me last night to say that I needed to ring the oncology unit and tell them about my weight. This gave me the excuse I needed and I 'grasped the nettle' and rang my breast care support nurse. I knew she wouldn't deal with the Herceptin, but it was a reason to ring and gave me an opportunity to express some of my concerns. She was wonderful and suggested we should get together for a coffee and a chat. 'Well done' she said, 'you've taken the first step' and yes, I do feel some relief. I've also joined a MacMillan chat site, but don't know if I will use this, we'll see.

Thur. 15th Oct. 2009 'Herceptin No8'

Joan & Gerry - Back in Yorkshire!
Goodness it comes around so quickly. I felt absolutely 'wrung out' this morning following a five hour journey back from Letchworth, most of it sitting on the M1 in an endless queue. The meeting went well and it was great to catch up with the rest of the team, all of whom I regard as good friends as well as colleagues. Unfortunately my left side and under arm along the scar and 'tunneling' was really uncomfortable, largely due I would say to heaving heavy bags around, plus driving, which makes me very tense. We normally stay up for a few drinks and a laugh, but I was too tired once we'd eaten.

My best friend Joan visited this morning, it's so good to have her and Gerry back in Yorkshire and we're planning lots of catch up time, with lots of shopping of course!

It was a different nurse today Jo - and she was lovely, really chatty and very confident. She took a long time carefully feeling for a suitable vein and with a little patience was able to site the cannula first time. We talked about my oncology review last week and I mentioned my weight loss. According to the sheets in my Herceptin file, I was 72kg when they calculated the dose. Well I happen to know that's not correct, I was at least 75kg and I also know for sure that I've lost over a stone since I stopped chemotherapy. So I weighed myself - 69.4kg.

Jo said she would speak to her Manager as any significant weight loss means they may have to re-calculate the Herceptin. So hey, how come the oncologist didn't pick this up? I'm still really cross about his dismissive attitude and less than happy with the number of times I've had to chase or remind them about appointments etc. It only adds to my feelings of uncertainty and 'loneliness', well that's the only word I can think to describe how I feel at times, but it's no reflection on Graham, family and friends, it's a much more complex loneliness that exists deep inside and makes my brain feel like scrambled egg at times, especially at night.

Saturday, 10 October 2009

Sat. 10th Oct. 2009 'Friends come to call'

Chris & Carole
A ray of sunshine in my gloomy week - we've had a brief, but welcome visit from Chris & Carole, dear Baha'i friends who we first met in Swaziland 18yrs ago. The last time we saw them was in 2001 when we visited them in Washington DC. There was such a lot of catching up to do in such a short time and I'm eternally grateful to The Ate O'clock Restaurant for a fantastic meal and to Allan for giving them a wonderful historical, architectural and all round interesting tour of York. Roo, Joseph, Louis and their respective partners came over last night for a reunion with Chris and Carole - a very tiring, but satisfying evening, with food courtesy of my 'Jamie' books (simple but very effective!!)

October 8th 2009 - 'A year since diagnosis'

It really doesn't seem possible that a whole year has gone by since I was diagnosed. Did it really happen, have I really gone through two lots of surgery, chemotherapy and all the ups and downs associated with diagnosis and treatment. It does seem like a dream, but I am constantly reminded that it most definitely isn't.

Ironically I had to attend the hospital for a mammogram of my remaining breast and a review appointment with the Oncologist. It was stomach churning just having to return to the Cancer Unit, and why do I always end up sitting next to some obnoxious, loud person with a hacking cough and runny nose.

Unfortunately I left the hospital with more questions than answers. The mammogram wasn't a problem, but my meeting with the Oncologist was frustrating and I spent the rest of the day and night feeling angry. I couldn't sleep and I just wanted to scream out loud. The hardest part is I can't put how I feel into words. Pleasant though he was I felt he didn't answer my question regarding the future and was outright 'flippant' if that's the right word when I asked about my 'Staging'. He was sympathetic regarding my bowel problems and confirmed my suspicions that this is a side effect of Herceptin. Oddly though and knowing that I'm struggling with this ongoing treatment, he suggested that I could either take tablets, or they could stop the Herceptin!

So now I'm completely confused - Herceptin is a three weekly treatment for a year, which I was told I needed because of the Grade and aggressiveness of my cancer. So on what basis is he suggesting they could stop it. When I asked about the 'Stage' of my cancer he seemed almost defensive and said 'well, it's 'early breast cancer, the nodes were ok'. Well, excuse me for asking, there are only two types 'early' and 'metastatic'. The former I know I've been treated for, but on the understanding that it was 'invasive' and they therefore don't know whether it has gone elsewhere. Also, if you read American research it's evident that 'lymphovascular invasion' is regarded to be just as serious in terms of recurrence and future prognosis.

That's it in a nutshell, except that I do worry about my lack of appetite, general bone ache etc., but I don't feel inclined to pursue these now for fear of being labelled 'over anxious'.

Friday, 2 October 2009

Frid. 2nd Oct. 2009 'Nowt Much'

Missing Kitty Cat.

Nothing much to report, but it's Friday evening, Graham is out singing and I'm just enjoying a relaxing evening by the fire. Yes, we lit the fire today for the first time this year, it's small, but very cosy. The only thing missing is Kitty, she would have been curled up in the ashes by now. Anyway, Pat and Mike came over today and we had home-made soup in the warmth of the fire, like something out of Oliver Twist.

I'm strangely relaxed about my appointments next week. I'm not expecting any surprises, just confirmation that the worst is over and I can try and get on with my life (apart from the 3 weekly Herceptin). I do have questions and I still have anxieties, but they're more in perspective now, so once the shoulder pain and joint ache settles I'll be happy. I had a short note from the hospital yesterday to say that my echo cardiogram was ok, so the Herceptin hasn't knackered my ticker so far.

Monday, 28 September 2009

Mon. 28th Sept. 2009

Not feeling brilliant at the moment, nothing I can put my finger on, I just don't feel 100%. I am finding the constant 'toothache' type pain in my left arm and shoulder/neck very wearing, especially at night. I sleep intermittently because I can't get comfortable and when I do drop off, my shoulder becomes paralysed and my little finger goes dead.

I'm disappointed with the discomfort as I thought everything was settling down really well. I seem to be experiencing muscle and nerve pain which makes me jump at times and I'm hoping it won't last for too long. Anyway, I'll be seeing my Oncologist on the 8th, so I'll mention the aches and pains to him.

Other than that, life seems pretty good. Work is ok, a bit busy, but I'm coping at the moment. I've just booked tickets to see Billy Elliott, something I've wanted to do for ages, so no time like the present.

Thursday, 24 September 2009

Thurs. 24th Sept. 2009 'Herceptin No7'

All went as planned this time and as an added bonus it was the nurse who did my first treatment. She is just a 'breath of fresh air' and her relaxed, professional manner puts me at ease. Cannulated at the first attempt, plus she asks a lot more questions and is genuinely interested in helping with any problems or side effects.

I've mentioned some 'new' intermittent pain to my lower left rib and on my sternum, a burning type pain, sometimes nagging, sometimes sudden. She thinks I should mention it to my Oncologist, but I'm sure it's just muscle and nerve pain.

I'm tired today after two days of work travel and I know the Herceptin will flatten me for a couple of days, but otherwise all is well. I've managed to alter a couple of skirts and a dress which I'm loathed to give to charity, but I think I'll have to treat myself to some new items. I'm also parting with some of my shoes as I'm finding that certain styles give me pain across the base of my toes. I suspect it's due to arthritic changes as my fingers and the base of my thumb are the same and exacerbated by cancer treatment.

Thursday, 17 September 2009

Thur. 17th Sept. 2009

I've had three appointments through this week. Two for October 8th, a mammogram and my review with the Oncologist and one for an echo, which arrived today and is on Monday, so I've had to change things round in my schedule.

I've worked hard so far this week and feel as though I'm getting on top of things, but I am tired today and my shoulder is aching, so I'm looking forward to the weekend and spending some time with Graham, friends and family in York. I need to buy some new clothes as I seem to have shrunk further - that'll be such a hard task, hmmmm.

Tuesday, 15 September 2009

Tues. 15th Sept. 2009 Sadness and Admiration

'Mr Robin' by Graham.

First words I heard this morning on the clock radio were that Patrick Swayze had died. I felt really sad, but he made the most of his life and stayed so strong right till the end. Thank you Patrick for your inspirational dancing skills and two of my all time favorite films 'Ghost' and of course 'Dirty Dancing'.

Today was only my second day back at work after the holidays. Yesterday was awful and I came home from Scunthorpe feeling completely wiped out and unable to hold even polite conversation with Graham. I just couldn't seem to get my head around the hundreds of e-mails, plus we had a very long tele-conference which I struggled to follow. However, today has been better and I've managed to make some headway in prioritising the work.

One thing that has become obvious since my Herceptin last week, is that the treatment definitely increases my feelings of anxiety and triggers the Irritable bowel problems. I should have received an appt. for a follow up echo cardiogram last month, but it seems to have been forgotten, so I've spoken to Prof. D's secretary and I'm waiting to see what happens. I have however received an appt. for a mammogram on the 8th October, ironically a year to the day since I was diagnosed, lets hope it's a better outcome this time.

Tuesday, 8 September 2009

Tues 8th Sep. 2009 Herceptin No6



More Holiday pics

No call last night and by 10.30a.m. this morning I was convinced nobody was coming, so I called the Clinical Manager and left a message on her answer machine. Twenty minutes later I got a call re-assuring me that someone would be coming to do my treatment around 3.30p.m.

It was Andrew who came and he admitted that I hadn't been on the list, so my suspicions were confirmed. The thing is, I wasn't going to ring this morning as I sort of knew they'd screwed up and I was cross. My attitude was that if they didn't turn up and I needed to start again with the 'loading dose', I would tell them 'no thanks'. Fortunately Graham persuaded me to check, but I'm still cross as it just adds 'insult to injury' as far as I'm concerned.

Andrew is very nice, but he does seem to struggle to site the cannula. first attempt looked good but then it started to balloon, so no good. Second attempt was patent, but very painful at first. Ah well, that's another one over.

Monday, 7 September 2009

Mon. 7th Sep. 2009 'Home again, home again ....'

'The Three Amigos'
Back from a wonderful week in Cornwall. The weather wasn't too bad and it certainly didn't stop us having fun. We walked through miles of beautiful gardens, Eden, Heligan, Trebah and Trevano, all of which I can recommend. Our rented house was superb with views across Falmouth bay and we spent some happy evenings watching 'Star Trek', or playing 'Pictionary', which became even funnier when accompanied by several shots of 'Todka' (a locally made tipple, like toffee syrup with Vodka).

There were so many good times, too many to mention them all, but our night at the 'Minack Theatre' will certainly stand out as one of the funniest, wettest, most British experiences. Also the firework display on Swanpool beach - wonderful.

So, back to reality and my treatment tomorrow, well hopefully. I did ring before the holiday and change the day, but nobody has called as yet, so we'll see. I can only delay the Herceptin by 5 days, so if they don't come tomorrow it means starting the 'loading dose' again at the hospital and I won't be very happy about that.

Monday, 24 August 2009

Mon 24th Aug. 'Five more sleeps to Cornwall'

Yes I'm counting down the days now to our holiday, just need to confirm dog sitting arrangements, so I can relax. Relaxing, now that's something I haven't done for nine months. Even when I'm supposed to be relaxing my brain is working overtime. Last Friday I felt as though I was going to explode after a day at work when it seemed as though the number of things I had to remember and my ability to keep everyone happy became a big 'mush'.

After an hour or so at home 'winding down' things were more in perspective and I did enjoy the weekend especially the opportunity to have a little informal 'counselling' over a coffee and doughnuts with Graham and good friend Allan.

Well I have taken a step forward by informing my Manager that I'm struggling and I spent an hour today filling in an on-line research questionnaire all about long term sickness and how my 'return to work' was dealt with.

Today was my last opportunity to speak to the 'Breast Cancer Support Nurses' about arranging some CBT, but after some thought I made the decision to re-assess this when we come back from holiday. I think in my mind a good rest away from everything will give me the mental and physical energy to keep going and to plan my work activities in a more sensible manner. I realise it won't get rid of some deep seated anxieties and I suspect I may still need some support.

Tuesday, 18 August 2009

Tues. 18th Aug. 2009 'Keeping on top'

The last few days have been quite difficult for several reasons. Last weeks journey took it's toll and the fact that I was tired prior to my Herceptin treatment has resulted in me experiencing some of it's side effects, mainly fatigue and flu-like symptoms. I've also had an ulcer on my uvula (clacker) and an upset stomach. Second time lucky with the cannula, but first attempt left me with a painful haematoma on the back of my hand.

Quite apart from that I'm still feeling some confusion and pressure in relation to work, which continues to come in thick and fast. My blood results were ok, which I expected, so now I have to decide whether I want to access some counselling and how I'm going to manage my work load without 'crashing' and not coping. Fortunately we have a holiday coming up and that may well be the break I need to re-charge my batteries.

Thursday, 13 August 2009

Thur. 13th Aug. 2009 'Post Guildford Tm Mtg.'

Left to right - Fiona, Sally, Margaret, Laura, Anne, Alan, Steph. (Me in second pic)



Feeling a little jaded this morning, but at least I'm home safely from Guildford. It was wonderful to see my colleagues (my buddies) and to feel part of the team again, although I must confess at times I felt as though I was standing outside the circle looking in! We had two busy days and I've got lots of new stuff buzzing around my head. We also had a super evening out at 'Bell & The Dragon' in Godalming (worth a visit if you're down there). Alan (Dr Davis) was on form with his numerous stories of past experiences and people in BOC. I was sitting next to Laura, she's our new Admin support and worth her weight in gold. Laura comes from South Africa, so it was great to share memories of our time in Swaziland.

Set off back at 14.40p.m. yesterday and arrived back at 19.10p.m. It was a reasonable journey, but I do find it difficult at the moment, my confidence is quite low and it's physically uncomfortable. Everyone keeps telling me how good I look, and that's really important to me, but outward appearances are often hiding many underlying issues, both physical and psychological. I try not to go on about them too much, because generally people want to hear that all is well. However, this blog is meant to be a record of my journey (yes I hate the expression too, but it fits), and I think it's important to note the severe bouts of diarrhoea, which I believe is IBS. I have also developed a dry itchy rash across my lower back around the spine, which I've no doubt is anxiety related.

I need to ring for my blood results this morning and consider my next move, which may be some CBT. I've got my third Herceptin treatment today too and I can feel my stomach churning at the very thought. Anyway, onwards and upwards, better log on to my work lap top and catch up on e-mails etc.

By the way, I didn't explain the 'Flying Ants' label on my last post. It was simply because I visited my Sister on the day that they all take to the air briefly and then shed their wings - uuuugh!

Wednesday, 5 August 2009

5th Aug. 2009 'Flying Ants'

Have been struggling a bit lately, seem to be on a roller coaster of feelings and emotions which I hate and can't control. Had a great weekend meeting up with my family and cheering Roo on in the Jane Tomlinson run, but even then there were moments of acute anxiety, feelings of sadness, even mini panic attacks. By mid day/afternoon I'm really fatigued, to the point that I can't think, can't be bothered to think, just want to sleep. Sunday evening was awful, I felt so messed up and that makes me really irritable with everything and everybody, well mostly Graham, who definitely doesn't deserve it.

Monday morning I woke feeling really depressed and decided to ring for an appointment with my GP. I nearly cancelled it a couple of times because I didn't really know what I wanted to say to her apart from 'Help', plus I feel it's a sign of weakness or failure almost to admit I'm not coping very well. Actually she was wonderful and felt that I had probably coped too well with the whole diagnosis and months of treatment etc. So the plan is to do a full blood count and rule out any medical reason. If all is clear, we will look at some support counselling (CBT) and possibly medication as a last resort.

I feel better knowing that I've been to see my GP, but I just hope things will get better, it's so annoying not feeling in control. Fortunately we're on the countdown to our Cornish holiday with Roo and Gor which gives me something to hang on to.

Sunday, 2 August 2009

2nd Aug 2009 'Jane Tomlinson 10k York'



Just a quick blog to say thanks and 'really well done' to daughter Roo and Gordon's Sister Viv for completing the Jane Tomlinson 10k run in York today. It was such a wonderful atmosphere as they came past us near the Minster and I was so emotional that I got several pictures of the pavement and the walls of the Minster. However, after a quick jog down the street we managed to snap them coming down Goodgramgate. I think they completed the run in around 1hr and 14 mins which is wonderful. We met in town after and celebrated with a well earned frappa-thingy drink.

Friday, 31 July 2009

Fri 31st July 2009

Nothing major to report this week, which is good I suppose. I've visited two sites and worked at home the other three days. Work wise I'm getting back on top of things, at least I'm having to as there's no one else in my area and new referrals and problems come in every day. I have always really enjoyed the 'case management' side of my job, yet this is the part I find most difficult at the moment.

Lack of stamina and a tendency to experience a sudden drop in energy levels can be frustrating, sometimes I can't even be bothered to think, I just want to sleep. I'm trying to increase my exercises as the scar lines are still quite lumpy and uncomfortable. I can now get my left arm up to the 'ten to' position and hopefully in another couple of months I'll have full movement.

Bruises are fading, I haven't spoken to anyone yet about the Herceptin. I've done plenty of reading and it doesn't really help. I don't really want to ring the cancer support nurses as it would seem as though I'm whining and feeling sorry for myself. On the other hand, there are some questions relating to my cancer and the need for Herceptin which I would like to know. I will give it further thought!

Friday, 24 July 2009

Fri 24th July 2009 'Herceptin No2'

(X marks the spot, or should I say one of five)
Just returned from a day at Brinsworth, well, half a day as I ran out of steam just after lunch which is probably due to the Herceptin treatment yesterday. Not an experience I'm keen to repeat, in fact if it had been my first 'Homecare Herceptin' treatment, I doubt if I would have continued.

All the anxieties and reservations I had about 'Homecare' became reality yesterday. The male nurse turned up as planned and I have to say was very pleasant and chatty. It was apparrant to me from the outset though that he was quite young and lacked the years of experience my previous nurse had under her belt. However, I initially didn't let this worry me unduly as we all have to start somewhere.

Unfortunately his first attempt I knew would fail as the vein he chose is one of the smallest and the pain was excruciating, which is a sure sign the cannula is not in the vein. That one removed, he then tried another three in the back of my hand, all of which were just as painful and despite a small 'flashback' (small amount of blood) in the chamber, once the cap was removed to attach the IV fluid, nothing came out. From past experience, I know that if this happens you're not in the vein. So attempt number four was on the underside of my arm and again this was unsuccessful. At this point he was talking about calling for backup. I tried not to make him feel uncomfortable and assured him it was my crappy veins (which does have something to do with it), but I was beginning to feel tattered and stressed.

I suggested that soaking my arm in hot water again might just encourage a useable vein. Fortunately I was right and on the fifth attempt the cannula went in and was patent. So one hour later we finally started the saline flush, followed by the Herceptin.

For the rest of the day I was pretty wiped out, I think I'd used up so much adrenalin. Today, my arm has been aching and the scar line feels uncomfortable, which I'm sure is also due to the Herceptin. I have gritty eyes and feel as though I'm suffering from a hangover, so thank goodness it's the weekend.

Friday, 17 July 2009

Fri 17th July 2009 - 'Back in the saddle'

The end of my first week back in the saddle. It felt strange going into Rotherham on Tuesday and the further from home I got, the more anxious I felt. However, I soon settled in and spent most of the day 'spring cleaning' so I could have a fresh start. It was great to see everyone and I was pleasantly surprised at how many people have been following my blog.

I also made a trip to Scunthorpe, which felt very comfortable. It's a small site, but I enjoy going because it's friendly and not too far to travel. Also I look forward to a coffee and a catch up with my friend Bernie.

Today I found a little stressful. Work is beginning to come in and much of it is hard to defer, plus I don't like letting people down. I've got two site visits a week planned, two days of First Aid & Cryogenic Burns training, plus I'm hoping to drive to Guildford for our Team Meeting in a few weeks. My tinnitus is louder, which is probably due to some anxiety and I do worry about having another vertigo attack, but I'm sure I will settle into it all in a few weeks.

Physically things are looking good. My weight is stable, even though my appetite isn't quite what it was. Range of movement in my left arm could be better, but I keep doing the exercises at least twice a day. By evening it is a bit uncomfortable, but a decent nights sleep seems to settle things down again. I'm beginning to think I may need some 'tweeking' by the end of the year (Consultants word, not mine) as the reconstruction is going to end up slightly smaller. I go back on Dec. 11th to discuss this and my progress.

Sunday, 12 July 2009

Sun 12th July 2009 - Just for Fun



Raspberry 'Reconstruction' Muffins - Sorry, that was Graham's name for them. I made them last night to take to my brother Alan's, but when they came out I took one look at them knew immediately the reaction I would get. I wasn't disappointed, they did cause a laugh and now they all think I'm suffering from 'boob envy' or something like that.

Anyway, we had a beautiful meal, Chinese style and I even managed the chopsticks. I'm so pleased that we're all so much closer these days and it's always a laugh when we get together.

Friday, 10 July 2009

Frid. 10th July 2009 - Hi Ho, Hi Ho........



It's off to work we go...... picture - me setting off in my new suit (many of my old clothes don't fit now). Not that I'm complaining, I needed to lose little.

A full on day with very mixed emotions. At times I was excited and enthusiastic, but once or twice I just wanted to come home and have a good cry. It was physically and mentally draining, so I was relieved to be able to get away for 3p.m. It's going to be difficult trying not to get too bogged down with ongoing case management and prioritising my gradual build up, but I'm determined to stay in control.

Thursday, 9 July 2009

Thurs 9th July 2009

This is my third week back at work and I feel it hasn't been too difficult. I decided right from the start to log on early, do a couple of hours, have a break, do a bit more etc. There has been the odd day when I've failed to do much at all, especially Mon, Tues this week, mostly due to the fact that I've had a mind numbing fatigue and stomach problems. I'm wondering if this is due to the Herceptin, so I'll have to keep a note.

Sleep is very poor at the moment too as the muscles in my side and back are really tight and at times painful. I still can't sleep on my left for more than five minutes and in any other position my shoulder and arms go dead. I still think I'm getting enough sleep in relation to the exercise I'm doing during the day.

Appetite fluctuates from day to day, but is definitely not the same as it used to be, maybe that's a good thing! Looking back at the amount I ate towards the end of my chemotherapy, it's a wonder I didn't put weight on.

Well, tomorrow is the day I get my office/keys/equipment back and Margaret is coming up from Guildford to go through a few bits. I am sort of excited about getting the reins back, but I'm also terrified that I won't cope if work builds up too quickly. It's hard trying to go back to normal when you feel anything but normal. I'm still really conscious of my changed body and worry that it shows or that people notice how strange my back feels when they greet me. Sounds silly, but it's very real for me and a constant reminder. I'm hoping I will get some feeling and flexibility back in those muscles as they're very hard and numb still - early days I suppose.

Thursday, 2 July 2009

Thur 2nd July 2009 - Homecare No1. The Verdict!

Had my first Herceptin at home today, which went well, considering I was ready to kick it in to touch yesterday. The trouble is I still feel it's very disruptive and I sort of resent the fact that I can't put treatment behind me, so the fact that no one had contacted me at 5 o'clock yesterday, despite two phone calls this week, left me feeling very annoyed and ready to tell them not to bother!!!

I did finally get a call last night to confirm, but by then I'd lost confidence in the service and began to wonder if it was like many of the other home care businesses - useless. So I didn't sleep and was very anxious and close to tears this morning. However, when the nurse turned up my anxieties were quickly dispelled, she was very professional, friendly and a marvellous aim with the cannula!

We did note that my BP is very low 90/60 which is bordering on hypotensive. My BP has always been just right around 120/80, but went low following my first surgery and doesn't seem to have picked up since then. It isn't a problem at the moment, providing I don't stand up too quickly, but I think it needs monitoring in relation to the Herceptin and it's possible side effects on the heart.

The treatment took 90 minutes and the whole visit approx two hours. It did appear that I should have had some other documentation however and she hadn't been told this was my first home treatment, so some of my worries weren't unfounded. Everything went fine and I haven't suffered any side effects.

Monday, 29 June 2009

Mon. 29th June 2009 'week two'

Will be visiting my site at Rotherham this week and talking to the girl who's been keeping things ticking over for me. I think it will be a good confidence booster to see colleagues and be in my own office again. It will also feel more like I'm back at work too, although I'm really appreciating the time to read e-mails, documents and general BOC news. One bit of sad news is that my good pal Joan is taking redundancy after 35yrs and I'm gutted that she won't be there when I go back. Joan has been such a good friend and brinsworth will feel very lonely without her. Also, who's going to hold the vomit bowl if I have another vertigo attack. Thanks Joan, I wish you every good thing in life and we will keep in touch.

Physically I'm feeling a bit frustrated as things still don't look or feel very good. No pain now, but a discomfort that is hard to put into words and still restricts many of my daily activities and frequently disturbs my sleep. I'm doing exercises every day and would like to start jogging, but that really inflames the muscles, so I'll have to wait a little longer.

I bought some special bra's recently and my sister gave me some soft support tops, both of which I can wear for most of the day now. The only thing I'm conscious of now is only having one nipple! Would be ok if it was winter, but now it's really warm and I want to wear t-shirts, I think it looks a bit odd and I'm convinced people are staring at me in the street. I'm definitely going for nipple re-construction in Dec, but until then I may have to purchase a false one. Apparently they're trendy at the moment!

Should document the fact that my stomach/bowels are not good at the moment and it does worry me a little. My appetite is not as good as it used to be either and while I like being a size 14, I don't want to lose any more weight. I have my Herceptin this Thursday, so I will mention my concerns then.

Lots of people have been running and fund raising in my name and I feel very humbled by their thoughts and efforts. Thanks everyone.

Monday, 22 June 2009

Mon. 22nd June 2009 'Back to Work'


I want to start this entry by saying CONGRATULATIONS and a huge THANK YOU to my daughter Roo and Viv (Gordon's Sister)who completed the Jane Tomlinson 10k run in Leeds yesterday. I feel inspired to get fit now and who knows I may even manage a marathon myself next year.

So, back to work today, well technically anyway. I was feeling fairly relaxed when I got up this morning, I slept well which always helps and I logged onto my work lap top about 08.30a.m. Just as I feared the VPN connect wouldn't recognise my password and I had to ring the IT people in India. This actually went well, but I could feel my stress levels rising.

We had a Telecon which lasted and hour and a half, during which I felt decidedly inadequate. I feel as though I've lost four years of knowledge and experience, it's like being the new girl. However, it was good to talk to everyone and I'm looking forward to our team meeting in August. The only other problem I encountered was holding my mobile phone for 90 mins or more, it really makes my shoulder ache so I'll need a headset.

That's it for now and I'm optimistic.

Monday, 15 June 2009

Mon. 15th June 2009 '....and finally'

Very mixed feelings today. I've just been to see my GP, who is lovely by the way, to ask for a return to work certificate. I plan to start a very gradual return next Monday 22nd. It is my decision as I really need to take the next step now. However, I have to confess I'm filled with dread, mixed with excitement and a touch of raw emotion at times. Dread at the fear of failing or not coping, excitement at seeing friends and colleagues and feeling a part of a valued team. The emotion - well, I'm not sure where that comes from, maybe thoughts of what has happened since October, the wonderful love and support I've had, plus the knowledge that I have another chance at life and being with my wonderful husband and children.

I will continue to update my blog periodically as it's become a real friend and a form of therapy.

Saturday, 13 June 2009

Sat. 13th June 2009

Picture: A sunny but windy day on Skye. Tea, with jam and cream at Uig bay.

I can honestly say that I'm feeling really well at the moment. Each day is a tiny bit better than the last, though I suspect it's going to be a pretty long time before things get back to something like normal. After six weeks the bruising is just beginning to surface, which gives me some indication as to the amount of tissue affected during surgery. I bought a sports bra the other day, but unfortunately I can't wear it yet as it presses on the scar line and the swelling under my arm.

I've been doing some driving over the last couple of days, to see how I manage. It's been ok but I have trouble with fifth gear and reverse both of which require a pulling or pushing motion with my left arm, in fact reverse needs both hands as it uses the affected muscles quite alot and can send them into spasm . The only other discomfort comes with too much use of the clutch i.e. when crawling in traffic or through town as this also uses the latissimus dorsi muscle. Actually I understand that even flexing the thumb uses this muscle, so everything above is understandable.

One thing that does annoy me is the restriction in my right arm due to what's known in the chemotherapy unit as 'knackered veins'. I'm told it could take a year to eighteen months for these to recover - oh joy! Fortunately the Herceptin treatment doesn't affect them like chemotherapy, but it does mean a cannula every three weeks and locating a useful 'juicy' vein is not easy.

I've had some wonderful gifts over the last six months, but I was over the moon last week when our friend Alan gave me a framed poster and a photograph of my two favorite folk musicians Aly Bain and Phil Cunningham - both signed! plus several cd's and a dvd (courtesy of Aly's manager). I missed their York gig as it was the day I had my surgery, so Alan pulled some strings with his radio contacts and hey presto! Many many thanks Alan.

Thursday, 11 June 2009

Thurs. 11th June 2009 - Herceptin No2

My second Herceptin today - it went very smoothly and we only had to hang around for three hours today. I was sitting next to a young girl who has been diagnosed with a rare Thymus cancer which was discovered when she was pregnant. Her baby is six months old now and we talked openly about hopes and fears, we also laughed a lot and I really hope she does ok.

It felt strange walking out of the unit, but it's great to know I don't have to go back now for a few months. Perhaps I can begin to piece my life together slowly.

Tuesday, 9 June 2009

Tues. 9th June 2009 'contemplating the future'

Picture: Daisy with Daisy Chain
I have to say that now I'm back in my own comfortable bed with my 'v' pillow I'm sleeping well, which in turn is helping me to cope with the discomfort that remains under my arm. My back still feels like concrete and there is a reasonable area of numbness which may or may not go in time. I'm doing daily exercises and I hope in a couple of weeks I can start some gentle swimming.

I am now contemplating the immediate future in relation to work. I can't deny that there have been occasions when I've wondered if I'll ever get back to my job. Although I did do a couple of weeks prior to this surgery, which went extremely well, I have lost a lot of confidence again and find I am struggling with a roller coaster of emotions. I know it must be hard for anyone who hasn't been through this to understand the complex physical and emotional issues involved, many of which pop up when you least expect them. Feelings of being physically ugly, even when covered up. Fears of being a lesser person because society puts restrictions on people who've had cancer in relation to insurances, mortgages, jobs etc. The ever present fear of secondary cancer (no matter how positive you may be).

Contemplating a return to work is no small hurdle, especially when treatment is still ongoing and both body and mind are still recovering from nine months of trauma. However, I am lucky enough to have a brilliant manager and four wonderful colleagues who have become a source of invaluable support as well as really good friends. So, providing the Herceptin goes well this week we will work out a gradual return hopefully from the 22nd June, initially from home and building up gradually.

I do think that my return to work will also benefit Graham as his daily routine has been turned upside down too and I sense that we both need to have some Independence and structure.

Monday, 8 June 2009

Mon. 8th June 2009 'Back in Circulation'

Picture: Lunch at Flodigarry Hotel, Skye.
Phew! What a week. We returned from The Isle of Skye on Saturday after a fantastic week of none stop sunshine and lots of fun. It has been a real tonic and my only regret was not being able to join Joseph and Louis on a couple of great walks across the Quirang and to the Old Man of Storr, but next time! Me and Graham did the tourist bit and because of the sunshine we were able to take Daisy dog with us on most trips.

The holiday was tinged with some sadness though as we lost our 21yr old cat 'Kitty' the day before we set off and it still seems really strange not seeing her wobble through the room. Thank you to everyone who sent kind words regarding this.

In terms of my progress, which has always been the main purpose of this blog, I am improving. Well, I am improving physically in as much as I don't have the acute pain I was experiencing before the holiday. I'm still very restricted though as the muscle down my left back or flank is rigid, which means I can't get my arm above shoulder height yet and certain movements, like trying to get my arm into or out of a sleeve send it into spasm which can be really uncomfortable.
The scar lines have healed beautifully and there is just a small amount of swelling to go now.

I have a further Hercetin this week (11th June) at the hospital. Providing this goes well, the rest will be carried out at home every three weeks for a year. Also I will probably plan a very gradual return to work which at the moment fills me with dread. I think it's more psychological than anything else. It's not like having any other illness where you get better go back to work and that's an end to it. Because my body image has changed and I'm still having treatment, it's difficult to feel as though anything will ever be normal again. A large part of my job is supporting people and right now I'm struggling to support myself at times.

I do intend to continue my blog for the foreseeable future as I think recording my gradual rehabilitation will be useful info in my profession when supporting employees in a similar situation - at least that's the plan.

Tuesday, 26 May 2009

Tues 26th May 2009 'No regrets'

Do I have any regrets for choosing reconstruction? well today I think I did, because four weeks on and I'm still experiencing acute pain and fluid collecting along my back. I realise I'm probably being impatient and expecting too much, but it doesn't help. Last night I slept very little due to acute discomfort which seemed to come on just before bed time. Yes, I did have a busy day making lunch for family visitors, but I did nothing out of the ordinary. The only possible trigger for a flare up may have been a sneeze! It seems ridiculous I know, but I remember it pulling the muscle in my back and causing it to feel knotted and in spasm.

So today has been a dead loss as I've been too tired to be bothered with anything, yet frustrated and bored. Still, not long to our Skye journey, plus Roo and Gor have returned safely from their mega trip to New England.

When I'm in pain and tired I do wish I hadn't bothered, but when I look in the mirror at my reconstructed breast, I can't help but marvel at the result, so onward and upward and definitely 'NO REGRETS'.

Sunday, 24 May 2009

Sun. 24th May 2009 'I Has Hair'


It's a fab day today, warm and sunny. I slept better last night even though Graham was away and it felt a bit lonely.

I'm still having to take pain killers, but at least it doesn't feel as though I'm being sawn in half today. Being able to relax in the sunshine makes such a difference. Now all I have to do is not look around at the million and one jobs that need doing!

I've got hair, which looks darker on the photo, it's actually looking very grey, but I don't care. I also noticed that I'm going to need to shave my legs very soon (is that a down side?). Eyebrows - yes, eyelashes - not that evident yet, other body hair - yep!

Friday, 22 May 2009

Frid. 22nd May

A really awful night, couldn't sleep much due to pain and pressure from a new build up of seroma. I don't know if this is due to having the Herceptin infusion and saline flushes in my left arm, or a reaction to me potting three small plants (crouching pulls my left back). It may well be the latter which has inflamed the tissue again. If so it's very annoying and really highlights how limited I am if I don't want to keep upsetting the healing process.

I was going to ring the Breast Care Nurses this morning, but I've decided to wait and see if the fluid is absorbed again over the weekend. There is a risk of infection every time fluid is drained off and I'd rather avoid that. Also, Daisy is due for a coat 'stripping' this morning which takes about three hours and it would only complicate the day if we had to scoot off to York. I will increase the Diclofenac and Paracetamol again and generally take it easy - ha ha!

Thursday, 21 May 2009

Thur. 21st May 2009 'Herceptin Treatment No1)

Thankfully my first Herceptin treatment has gone without incident. The appointment was at 9a.m. so we had to be up and off early. I confess I was worried about yet another cannula in my right hand and my fears were not unfounded. Despite a good soaking in hot water, my veins were not playing. Eventually a vein was picked and the cannula inserted, but it was obvious pretty quickly that it wasn't working (I could tell 'cos it bloody well hurt). Another hot water soaking and we decided to go for the left hand, although those veins weren't wonderful. This time it was successful and after a saline flush and a baseline BP, temp and pulse, the Herceptin infusion was started. It runs very slowly over about an hour and I was given a buzzer to call for help if I felt unwell.

The treatment room was actually very busy this morning and everyone joined in general conversation and joked about their demise. At least three people told me how great my hair looked and they all commented on my patent leather shoes which made me feel good.

Graham stayed for the first three hours and then went out for a break. Once the Herceptin had finished I was able to relax and have a sandwich, read a bit, play Nintendo etc. It was pretty boring however and by 3.30p.m. when I had my last assessment, I was really ready for home and some pain killers.

So home now and happy that I can concentrate on getting ready for Skye. There is a possibility that I will experience some flu like symptoms tomorrow, but if that's all I can cope!

Later in the Evening: I have developed increased pain again, my breast feels rock hard and about to explode and the scar on my back seems to be building fluid again. I'm in for a poor night I think.

Wednesday, 20 May 2009

Wed. 20th May 2009 'Diamonds and Rust'

I haven't blogged for a few days simply because there's nothing major to report, it's been more a case of coping and discovering what I can and can't do at the moment. Typically I have felt able to do more than I should, not that this amounts to much ie: hanging out washing, changing bed covers and general house work. Unfortunately these activities have a delayed effect in relation to pain and I have discovered to my detriment that 24hrs later it feels as though someone is trying to saw me in half below my left arm and breast.

The above also occurs if I do too much bending or crouching, which I presume is because I'm working what remains of the muscle on my left back and the rigidity of this area from my shoulder blade to my hip is testimony of it's lack of flexibility.

One other rather strange effect, which I've been aware of since I returned to the ward after surgery, is the need to pass water more frequently, especially at night. I have to get up at least four times in the night and I pass a good amount of urine. Now the nurse in me is curious - I'm pretty sure it's not early Diabetes as I don't have any other symptoms. I reckon it's the inflammation and fluid lower down on my back and some pressure on the nerves near the bladder. Well that's my explanation, but I'll keep an eye on things.

So that's the 'rust', but the diamond is my new breast, which despite the remaining swelling and the patchwork circle, looks incredible. My delight with this piece of surgical brilliance makes me eager to show it off to close family, barring Michael (my brother-in-law) who goes very pale at the mere mention. The other diamond in the rust is the speed at which my hair is now growing, plus I also have some eyebrow hairs appearing. Would very much like to see some eyelashes now, but hey, patience patience!

Saturday, 16 May 2009

Sat. 16th May 2009

It's been a tough few days and I can't lie about the amount of pain and discomfort. I've managed to get through by reminding myself that the 'short term pain' will be worth the 'long term gain'. I know that from a psychological point of view I would have struggled without the reconstruction as my femininity and body shape is important to me.

When I woke up this morning I was immediately aware that the swelling under my arm had subsided ever so slightly and was less sensitive to touch. Lets hope this is the beginning of a gradual improvement.

Did I tell you that I've been trying contact lenses. Well I don't think they're going to work, especially as I managed to mistake baby moisturiser for cleaning fluid this morning - doh!


Been for a look around the Lotherton Hall Flower Show with my Sissy and Brother in Law. It was a welcome break, but I'm very tired now - need a sleep zzzzzzzzzz!

Note: I now have a noticeable covering of hair, very soft and rather grey looking, but it's hair!!

Thursday, 14 May 2009

Thurs. 14th May 2009 'fed up now'

Had a super day yesterday. Made some sandwiches and a flask and we took Daisy to Fraisthorpe beach, about an hour away. This sudden decision was partly due to an urge to walk on the beach, albeit wrapped in warm coat and woolly hat and partly to get Daisy used to a longer car ride before we go to Skye. It was lovely and sunny and the wind wasn't too cold. Daisy loved it, chasing her ball and running in the sea. The down side is that by evening I suffer increased pain even though I've only walked.

This Morning - Yes, I think I've reached the 'brassed off' stage. Constant discomfort which deteriorates into just bearable pain by evening is beginning to really run me down now. Four hourly pain killers don't seem to make much difference and although I get some sleep, it's very disturbed and each time I wake up it's excruciating. I was under no illusions about this operation, but even by my standards it's bloody tough. At times it feels like I've been crushed, then it can feel like someone has attached hooks to my reconstructed breast and is trying to pull it off. I know it will ease eventually, but right now I'm frustrated, unhappy and don't even have any enthusiasm for the coming holiday.

Monday, 11 May 2009

Mon. 11th May 2009 My personal 'Drainer'

Should start by saying thanks to my brother Alan and his lovely wife Tina who did 'meals on wheels' yesterday. Tina is an amazing cook and we dined on chicken stir fry, onion noodles, rice and pork, it was wonderful and we had a super day.

Sadly I slept very little last night due to the pressure of fluid which has built up around the wound on my back, so at 8.30a.m. I rang the Breast Care Unit and explained apologetically about my predicament - 'would it be possible to come in this morning and have the seroma drained', to which without hesitation came the reply 'certainly, come in at 10.30a.m. and we'll do that for you'. I know it doesn't sound much, but to have such a positive, instant reply was so refreshing and made me feel so much better.

So we arrived at the unit where Carole and Jackie drained around 100mls with a needle and syringe. So I now have, as my Son in Law Gordon put it, a 'personal drainer' as opposed to a personal trainer - ha! I also spent a few minutes chatting to them about how I feel right now and they were really supportive and understanding.

It does feel a bit easier, but I'm still getting 'breakthrough' pain despite paracetamol and diclofenac. I suppose I'll just have to be patient as it will get better in a week or so.

We picked Joe and Vickie (my son & his girlfriend) up on the way out of York. They came back with us and had some lunch. It's nice to see Joe looking happy and Vickie seems a lovely girl, lots of character and very bubbly.

Saturday, 9 May 2009

Sat. 9th May 2009 - Gifts, Cards and Company


What a lovely day! First of all I slept quite well last night, probably due to rest and regular pain killers.

Apart from the fact that it was a lovely day, I had the most wonderful bouquet of flowers delivered (inset)courtesy of my workmates - thanks guys you're all great!. You can't see from the photograph, but many of the flowers have small jewels inset at their centre.

Not long after, the postman delivered a package from Australia which contained a bar of Aussie chocolate (recovery food) and a super cookery book, so that Graham can cook me some nice meals! I do feel really lucky to have so many people supporting me.

Joan and Gerry arrived at 12.30p.m. and we had fish and chips, something none of us have had for a long time, they were lovely. Just after lunch Ruth and Gordon arrived for a visit before they set off on their 'New England' holiday.

So all in all it's been a super day and apart from being a little uncomfortable at times, I've felt quite well and really enjoyed all the gifts, cards and company.

Friday, 8 May 2009

Frid. 8th May 2009 'Good grief'

What a really crap night, I woke up at 2.30a.m. in alot of discomfort and didn't sleep thereafter despite pain killers. I just couldn't find any position where I didn't feel as though I was laying on bricks with somebody sitting on top of my chest. I thought I would be more comfortable having had so much fluid drained off, but no such luck, in fact it seems to have built up again. Sometimes when I'm sitting I get a 'trickling' feeling in my side/back and can only assume it's the fluid moving under my skin - uuugh!

I think yesterday was a bit too much, so sadly I may have to cancel a trip to York for lunch today. Probably for the best as my stomach is still playing up. Several hours after eating I get griping stomach ache, the kind that makes you sweat. This comes and goes until I suddenly need to rush to the loo. Oh well, just have to limit what I eat today - great!

6p.m. - I've had a quiet day as planned and I think it was a good decision, especially as I've been really uncomfortable with significant pain despite regular paracetamol and diclofenac. Our friend Alan came this afternoon so I was musically entertained by him and Graham. I doubt if tonight is going to be any better and I think by Monday I may need some more seroma draining.