Wednesday, 24 April 2013

So many updates....

..... that I hardly know where to start.

Since I last blogged (and, apologies for the even longer absence than last time), I've been very down in the dumps for various reasons, but finally, with the emergence of the sunshine (better late than never), I seem to be coming out the other side.

I've no idea what set me off really. Probably a combination of being Neutropenic again after my last chemo, and waiting to start Radiotherapy, as well as waiting for MRI results.... too much to think about really.

The CT scan pre-RT was awful. For some reason it hadn't occurred to me that I'd have to lie half naked with scars etc on show in order for people to manoeuvre me into the precise position needed for the RT sessions themselves. Despite the extremely professional and wonderful staff, I felt extremely exposed and vulnerable, which stressed me out completely. My back also went into spasm after the CT scan which really didn't help... Hey ho.

We managed to get away to see my parents before starting RT which was lovely. It was great to be "home" again, visiting old walks and haunts, but it also made me extremely sad. So much has changed since I was last at home and I'm really not the same person any more.

What didn't help was just as we arrived at my parents, my Breast Care Nurse rang to tell me that there were some "changes" on the MRI that needed to be checked out, which of course sent me into completely panic mode. I won't keep you in suspense - a week later, I had an ultrasound which showed some milk ducts blocked with "debris" but nothing that needed to be biopsied, so an all clear for my remaining side which was an enormous relief. It didn't stop me panicking for 10 days or so though.

What it has made me realise is that I really do want another mastectomy, regardless of whether I have reconstruction or not. I am not prepared to accept the liability of keeping my left breast. Stupid really isn't it? We're born with two breasts whether we want them or not. The fact that they might cause such problems never enters our heads until the shit hits the fan. Enough is enough for me - I'm going to take back a bit of control and get rid whilst the choice is still mine.

What else has been happening? Too much to mention really, other than the fact that I've survived the RT intact and so far without too many burns. Apparently the skin and my body in general will keep reacting to the dose of RT for another two weeks, so I can look forward to my skin getting pinker and being more tired for a little while to come, but I'm hoping it won't get too much worse.

I hated going to the RT at first and in honesty, I've never got used to having to lie on a table half naked with people prodding me into position. This is usually done in the semi-dark so they can line you up with lasers for the RT, and when the lights are turned back on it felt, to me like I'd been abducted by aliens! You know those "classic" alien abducting scenes with the victim on a table, lots of bright lights, white ceiling....... just like that.

After the first couple of doses I started asking for the lights to be left off which helped a lot and reduced the feeling of being exposed. All of the teams work differently, and occasionally I was semi-covered up while they were giving me the dose on my neck, which was a relief. My back managed to cope with being on the table too - there's nothing like having to be helped up to dent the ego, but by the end I didn't get any muscle spasms at all.

All in all, RT was "better" than chemo, but it did feel relentless. Most of my appointments were in the evening - about 7pm, so the whole travel process is tiring. It's another milestone over and done with though, and I can't say I'm not relieved.

So, what's next? Well, I have an appointment to discuss my start of Herceptin on 13th May, two days after doing the Moonwalk, so I might be walking wounded! It'll be before the end of May though I think, so I'll have nearly 4 weeks off actual treatment which is much needed, from a mental point of view if nothing else. 

More than anything at the moment, I feel mentally shattered, and very brittle. It wouldn't take much for me to break but hopefully we will have calmer seas to travel for a little while.

I have finally started taking the Tamoxifen, and so far so good. I have already been having hot flushes and for a few days they eased off which coincided with starting the pills, but judging by the lack of sleep last night the hot flushes are here to stay for a while. No leg swelling yet, but I am keeping extremely active (training for the Moonwalk helps) so hoping to keep it at bay.

Should you wish to sponsor me, this is the link for my Moonwalk:

I'm hoping to do it in less than 8 hrs, but we'll see!



  1. Great blog, entering the start of journey with my partner, scary times :(

  2. So sorry to hear your partner is about to start down this bumpy road. If either of you ever need to talk, just shout.