Where now?

I'm not quite sure where to start this blog post, but then that's not really surprising because I'm not really sure of anything at the moment. I think I mentioned 'chemo brain' before and I can tell you it's a real thing and it's not just a problem during chemotherapy! Some days I just find it so hard to concentrate or focus on one thing. I find my mind drifting off but I have no idea where to. It probably doesn't help that my sleep can sometimes be disturbed, which is quite a common side effect of various cancer treatments added together with stress and grief you can probably understand why I'm not totally compos mentis! It's for this reason that I finally had to take a break from work. At the beginning of radiotherapy I was trying to continue working but it felt like a battle every day just to get myself into the lab never mind concentrate on any kind of work. Eventually I had to admit defeat as I realised forcing myself back when I wasn't quite ready would only be counterproductive. After a discussion with my breast care nurses and my boss we agreed that I would start a phased return back to work in September. It's a strange feeling not having that structure, but I am sure it was the right decision for me. I am unbelievably lucky to have such a supportive workplace.

I finished radiotherapy last Tuesday. It was a very strange feeling and something of an anti-climax if I'm to be honest. 4 weeks, 20 sessions, every day at 4pm sharp I would be at the hospital. Then suddenly no more. You don't really realise until you are approaching the end of treatment just how scary it is to finish. There's something reassuring about regular appointments and keeping your mind focused on treatment keeps it away from all the niggling questions, the ones everyone else has been thinking except you: Why did this happen? What if it comes back? But the biggest one for me: What do I do now??? But I'm probably getting ahead of myself, apologies, as I said my mind does tend to wander these days.

I pretty much explained the process of radiotherapy last time (although looking back at that blog I realise I was completely wrong about the window at the back of the room - no idea where my mind was that day!). The first 15 sessions were as I described, with the machine moving around me, this was treating the whole of my affected breast area and under arm (where lymph nodes are), the final 5 were what's called a 'booster', this is treating the specific area where my tumour was. This was a little bit more interesting, this time instead of the machine moving around me the bed was moved. I felt like I was on a rollercoaster - literally this time! After I'd been moved to the correct place the machine had an extra part fitted to it (to focus the beam I assume) and was brought in very close to me, some kind of cover was placed over my breast and again everyone left the room. This treatment took less time but getting me into the right position took longer. At my final review (a few days before my final treatment) I was very emotional, I burst into tears on the poor radiographer, I was about so say for no apparent reason, but that's not really true, there are lots of reasons and they're all probably completely obvious to everyone else, but as far as I was concerned it came completely out of the blue. After my final session I walked out of the department not quite knowing what to do with myself. In one way I felt the need to celebrate, but in another it really wasn't the time for celebrations, I'm still in mourning, and my treatment isn't completely over, I am still having Herceptin injections every three weeks. Even so, I felt the need to mark it somehow, walking out of the department completely alone was quite bizarre. I wanted a fanfare......okay maybe not, but a hug would've been nice. Eventually I took myself to the supermarket and bought myself some nice food, chocolate and a mini bottle of champagne. I went back to my room and took down all the get-well cards that I'd had up for months and had a little toast to myself. A mini celebration for a mini milestone. A week later I was able to celebrate with my 'chemo buddy', a lovely lady I met during chemotherapy who through some weird twist of events ended up finishing radiotherapy on the same day as me. We treated ourselves to cocktails and of course put the world to rights! ;-)

Champagne for one! 

Cheers! 

So now I am in this strange place where I feel the need to start moving forward with my life, as I've been stuck in a cancer bubble for the last 7 months, however, I feel I'm struggling now more than ever to do that. I'm still very tired, not all the time, I seem to have good days and then suddenly days where I'm just wiped out. This is most evident to me when my I try to play with my niece and nephew, I just don't have the energy to be the crazy auntie JoJo I previously was. I feel like an old lady whenever I try to get up from sitting for a while, my legs ache and my hips hurt. I'm also experiencing hot flushes, joy of joy! It's funny, throughout chemotherapy when I felt surprisingly well (well, better than I was expecting anyway) people were constantly telling me how tired I looked, and then my response to the question "how are you?" was usually "I'm fine!" and I really meant it, at least I thought I did. Now, however, when everyone tells me how well I look because my hair is growing back and I have some colour in my face, I am struggling. I want to tell them I'm not well actually. So, when people ask "How are you?" I shrug and say "not great". I think that shocks people, but I don't really know what else to say, it's the truth. I want to be positive and strong, but I can't lie. I recently shared a post on my Facebook page written by the chief executive of Maggie’s about the language used when talking about or to people with cancer. The emphasis is always on the 'battle' and staying 'strong' and 'positive'. I do think I have been pretty positive throughout the experience but I also think the pressure to appear strong is huge, and not always healthy. We can't all be strong all of the time and we need to allow ourselves time not to be. I hate the term cancer 'survivor' also but I won't rant too much about it all as I think it was put much better in the blog I mentioned. I'm not trying to make anyone feel bad for saying these things either, I know everyone means well and that it really is hard to know what else to say, and in all honesty I've found myself repeating the same phrases that bothered me to other people I know going through treatment when I've been lost for words, the terms are just so ingrained in the way we talk about cancer.

So where now? Honestly I don't really know. I have made the decision that I should stay in Inverness at least until my year review which should be sometime in January. I'll continue to have my Herceptin injections every three weeks so I think it is best to stay with the same hospital and I don't really have the mental energy to consider where else I would go, with this in mind I have finally got myself a new home, and by that I mean I have found a flat to rent. A two bed place all to myself. I'm so very excited to finally get away from the hospital accommodation, I will move in at the beginning of September after a much needed family holiday. Maggie's run a course called 'Where now?' to help people deal with the end of treatment which I'll be starting when I get back, and hope it will be helpful.