My drops of tears I'll turn to sparks of fire

About time I gave an update, and as I am now half way through the radiotherapy treatment, this seems as good a time as any. Daily radiotherapy started on 10th May, and during that time I have been back to work.   The round trip from home, to Bristol, to Cardiff and home again is approx 140 miles, so I am working from home on some days to reduce the driving and help me keep any tiredness at bay, and working short days so that I can get to Cardiff in good time.  This is working well, and I feel pretty much OK. I do notice myself getting tired by 2 or 3pm though - but tired of thinking and having conversations, rather than too tired to drive! It is a different kind of energy. Lymphodema On 14th May I took the day off work, as I had a 'lymphodema education session' in the morning, and radiotherapy in the afternoon.  It made sense to do something nice* in between, rather than travel home or to Bristol and back again. The lymphodema session was just over an hour, an...

It has been a while since an update, so let me bring you up to date. Back to work I went back to work, doing short days, on 30th April and everyone I work with has been absolutely fantastic.   I got gifts from my team and other lovely Library colleagues when I returned, and more hugs than I can count!  I'm so lucky to work with such wonderful people.   I am feeling a little tired by around 2-3pm, but getting a bit stronger every day, and starting to remember what I do for a living!!  In the last couple of days, I've also gone back to a few Faculty meetings, and all have been supportive there too.  I'm still feeling a bit "don't ask me any difficult questions", but getting there. Emotionally, the week before I went back I was still coming out of the end of the side effects of the final chemo, and had felt incredibly low.   Not depressed, as it didn't last more than a few days, but I had felt that nothing was worth the effort, blank, dark....

I recently discovered the hospital where all of my treatment comes from, and most of it has been delivered, has been the subject of a short documentary series.  Velindre: Hospital of Hope is a 4 part documentary looking at the work that they do. Quite a number of the staff who appear on there are ones that have treated me.  Chris the chemo nurse was one who helped me recover when I had my first allergic reaction at Nevill Hall.  Amy in chemo hasn't directly been my nurse, but she's been around and checked my IV line while I've been in.  Frederick who does the bone scan in Episode 4 is the guy who administers my MUGA scans, the room where the bloods are taken, is where my bloods are taken. My name has been called out on the waiting room tannoys in the same way they show. I'll be laying under one of those radiotherapy machines in a couple of weeks time. The series really shows what a fantastic cancer centre this is, and I think people may be able to better unders...

Today I had my final chemotherapy treatment, but it nearly didn't happen.  Clinic was yesterday, with Tej, and I reported that my bone aches had been worse but that I'd taken cocodamol and that helped control it.    Tej reminded me that although this is my last chemotherapy, it doesn't end once the treatment has been delivered.  The drugs will be in my system for another 3-4 weeks, and if I have any symptoms or questions, I need to call the chemo page line.   She checked that the medical genetics referral had happened, and that my radiotherapy was all in hand.     She said she would also book my next MUGA (heart) scan for June, as this is done every 4 months during herceptin, and refer me back to Theresa Howe to discuss my next stage of hormonal treatment, as they don't want to put me back on Tamoxifen.   She set my expectations that I may have to have injections of Zoladex to stop my ovaries making oestrogen until my ovari...

Today's excitement was popping back to Velindre to be measured up for my radiotherapy treatment.   It was very quick.   I lay on the CT scanner bed with my arms above my head, in arm holders.  It was very comfortable.   I had to shuffle my hips to the right a bit, and the radiographers were then happy.  They could spot all 3 of my previous tattoos - on my torso, on the right, left and between my breasts - even though they're so tiny that I've never spotted them!  They lined up the one on the right side, but needed to realign the other two so with a tweak of the tip of an inked needle, I now have 2 more tattoos.  And pen marks, so once I've washed those off, i'll be able to see how big they are. They also attached some ball bearings and special tape to me, to show up on the scan, and then the CT scanner itself did its work.   The whole thing lasted about 10 minutes.   They now have the pictures they need to be able...

The Day Before   -  The usual clinics and apart from the usual 'how have you been? do you need any drugs to deal with symptoms?' questions, I also saw a lady about the next step, radiotherapy.  I was pleasantly surprised by this, as I had wondered if I had to wait until I saw my surgeon again - and that appointment keeps getting put back. She ran through the potential side effects.  Soreness, blistering, tiredness that tends to be cumulative.  Heart damage, lung scarring.     Last time, I had just a plain chest wall on my right side zapped and 15 treatments, so apart from getting a square suntanned section, really didn't have any problems.   This time, I have a breast, a nipple, and a heart for them to work around.   If they can't avoid the heart area, they'll make me breathe in and hold my breath during the treatment as this makes more distance between the zaps and the heart. That's the most worrying thing, especially a...

Today, I met with Karen from the medical genetics team.  I last met her 8 years ago, when I was tested for genetic involvement in my cancer and the results came up with nothing, so I didn't have any expectation that things would be different today, but was informed that testing has got better, and there are genes other than BRCA1 and BRCA2  (usually pronounced 'bracka') that they can look for, so it is worth giving a fresh blood sample and having another look. I mentioned before that my oncologist can't quite believe that I've had cancer twice at an early age without any genes being involved.   I was told last time that there really aren't enough females in my family to give much evidence, but my grandmother had breast cancer at the same age as me, so me and my mum think it is likely there is something .  I realised as I talked to Karen today that the previous testing could have missed something.   She said the chances of BRCA1 being present is ...