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'.