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

Now that the big treatment stuff is done, it appears to be time to slow it down.  At least, according to Kelvin Gomez, my breast surgeon in the letter he wrote to the gynaecologist, Mr Furat Oweis.   As Mr Oweis read through the letter - aloud, and in my presence - Kelvin has said something like 'don't rush, she can have a break'.  Not those exact words, as I can't remember now, but words to that effect. I had a chuckle.  He obviously thinks i'm rushing.   I wouldn't say I am - but I would like to see the back of all this hospital stuff. Gynaecology So the news from today's chat with Mr Oweis, a more traditional consultant in that his 'customer service skills' are a little lacking, is that I will be getting an oopherectomy (ovary removal), by keyhole surgery, at some point in the next 4 months.    They can't test to see if I am post-menopausal unless I come off all treatment for 12 months - apparently.  And the test can be inconclu...

A couple of weeks ago, I came across this article about an oncologist who experienced cancer for herself and realised how trite some of her 'reassurances' to patients can be.   Two key observations have come out of this for me. Firstly, I didn't know about 'ringing the bell' at the end of treatment. I didn't know this was a thing.  And today, I found the bell at Velindre. But I haven't rung it yet.  Why not?? you may ask! Because I really don't feel like I'm at the end of treatment.  I still have a good number of herceptin treatments to go, and this whole ovary removal thing to explore.  Yes, I am past the biggest stages: surgery, chemotherapy and radiotherapy are all done and that is fantastic. A massive relief.  But I'm not finished yet. And on that note, and Secondly, I met with my lovely surgeon - Kelvin - last Monday, and effectively he signed me off his list.  He is really lovely, and in many ways I'm a bit sad that I won't see...

Nearly at the end of radiotherapy - just two more to go, as I write this.  I had a review today and I was reminded that the soreness may get worse over the next two weeks before it gets better, and given a pot of cream to help keep the area moisturised. All good.  However, the nurse I had the review with unintentionally upset me a bit.  She started with "I've been reading all about you. Gosh, haven't you been through it. To get it twice..." or words to that effect.     I know she really only means to be sympathetic and understanding, but when I hear a medical professional express some shock and horror at my experience, it makes it feel worse, heavier, serious, scary.    I end up being the cheerful one, telling her how "other people have it worse" (her expression told me that they don't, not all of them), and that I've coped quite well with all the treatments, really. I have. I really have.  I was reading today of one of the other ladies o...

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 ...

Until now, I have only worn my wig once, when I went out on Sunday.   Mostly, I don't think twice about it, but when i'm chatting to people I can't help but be over-aware that they  might be looking at me and wondering what's going on with my perfect, shiny locks!   It looks pretty good, but almost too good, if you know what I mean! Yesterday, I decided I was fed up with the fluffy look of the cut that Greg had given me a couple of weeks ago. Since then, most of the half-inch long bristles have rubbed out so it was much thinner than when he cut it, but a bit patchy and uneven looking.   So we decided he would shave it to a No 1 cut. Not quite clean shaven, but not far off.    Almost as soon as he had finished he said "I preferred the fluffy look" and I have to say, when I looked in the mirror, I agreed! Never mind, it is done now, and we'll probably both get used to it. Today, I'm wearing the wig, as I'm popping out later on, and expectin...

Just catching up with this week's treatment.  As before, will post daily updates to keep a diary of progress. The day of - Wednesday 7th March The appointment was at 3pm, so Greg went off to work to get some things done, and I cleaned the house in preparation for sitting on my arse for a few days.   When Greg returned, we beetled down to Velindre with me snoozing in the passenger seat, feeling too hot in the sunshine, with my hat on, and with Greg sending all the heat in the car onto his cold feet.    On arrival, we went directly to the Chemotherapy Day Unit and after booking in, waited for Tej to come along and go through the consent forms, which had to be done again as this is a different drug to the ones I'd already consented to.    The side effects of  Abraxane  are pretty much the same as the docetaxel as the active drug is the same, but the suspension is different.   I've read various experiences from others who have had ...

I'm at risk of being a proper drama queen here, but I made a big decision over the weekend.   I have decided not to try and work through this chemotherapy treatment.   I am now officially on extended sick leave, and won't be back at work for another 8-9 weeks. Everyone I have had contact with has told me what a good idea that is, and that they completely understand. Some may have been waiting for this day to come.  I think others were hoping I would see the light, sooner or later, including Greg.   In fact, I sense he is relieved. Others might be too.   I hadn't quite realised how me trying to press on with work might be making other people anxious. It is something I have had in mind from the start, but as you know, had wanted to avoid.  Part of it is pride - wanting to keep my good sick record.  Part of it is social - not wanting to become isolated.   Part of it is wanting to continue with some normality. Part of it i...

Here's my starter for the next chemotherapy round.   Again, i'll do day by day updates. As a recap on the last couple of weeks, apologies if I have been quiet. This is mainly due to being back at work all of last and this week, so just being busy! Last week was punctuated with a spotty face and some loose nether regions, but otherwise normal.  We had a day off yesterday, to take the caravan to the dealership for a service and warranty work, and to mooch around the caravan and camping show.  Managed not to trade ours in (there was nothing we liked any better). Hair loss Last Sunday ("Day 17") my hair began to fall out more noticeably.  Today is Day 21, and I can easily draw my fingers through my hair and offer you 20 strands. It doesn't hurt. I have thick hair, so no-one can tell but me.   I suspect I may decide to shave it off in the next 7 days, though, as it may start shedding itself on everything and get annoying. The day before Thursday 22n...