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.