Distant Bells

Well, I'm writing this two thirds of the way through the next part of the dance! The first couple of Radiotherapy treatments involved x-rays to check I was in the right position but since then, its just been the marking out and the actual treatment. The marking out process of preparing me for the treatment lasts longer than the treatment itself. Using the 'tattoo' marks from the pre-treatment scan, measurements are carefully made that lead to the marking out of the area to be zapped. My body is gently manoeuvred into exactly the right position with the instruction "I'm going to move you, try not to help me" which is the perfect way of getting me to just be floppy and trust the Radiographer to move me without my interference. Part of the marking out process involves me holding my breath to an almost uncomfortable point which in turn shifts my heart and lungs out of the way of the rays. The thoroughness and precision that the Radiographers work with is awesome! Just as with my Chemo experience in Burnley, I feel completely confident in the professionals carrying out my treatments. And once again, they find time for those little kindnesses that make such a difference. Keeping that personal touch despite treating so many people each day takes a pretty special person I think!

The waiting area at the Rosemere Centre is comfy, light and airy. Volunteers run a little café and provide a free cup of tea not just for patients but for those supporting them to appointments. And its a proper cup of tea too! We were given a voucher on our first day to show at the café and that is all that is required each visit to get that very much appreciated cuppa. And the volunteers are part of the kindness and wrap-around care of the unit. As I found during one extended visit, its a pleasant place to wait. And Chris is enjoying the reading material available! 

The only negative part of the experience so far has been car parking. We'd heard tales of queues and full car parks but haven't experienced either of those problems. However, our relationship with the vehicle recognition system has been less that amicable! Arriving for one evening appointment, we were able to park directly outside the unit. When we came to pay, the machine took the money then didn't acknowledge this and did not give a receipt. There was no one left in reception so we just wrote down the contact details for the people who run the system and went home. The phone line was all automated and the only available way to contact seemed to be by email- which Chris did. When we attempted to pay for parking the day after, the machine told us we'd exceeded the maximum time allowance per stay as we'd been there over 24 hours. Another email was sent. There was a similar problem in car park 1 a few days later when the machine wouldn't accept payment as it said we hadn't paid the previous day and so were officially again over the time allowance. Fortunately we had the receipt from the day before and were able to email a photograph of it together with a photograph of the screen when payment wasn't accepted. These are all just technical problems. Yes it does start to feel personal and a bit overwhelming when you're tired and just want to get home after treatment. But as long as you take photographs, keep a record of times and look after your receipts it can all be sorted by email- or I assume there must be a way to do it by post.

I wasn't sure what to expect by way of side-effects from Radiotherapy. Other people's experiences gave me a wide spectrum of advice.  At one extreme, some folks described Radio as "a walk in the park after chemo". At the other extreme, I was warned of overwhelming tiredness "far worse than the chemo fatigue". As with this whole journey, the different responses to treatment illustrate what a unique and individual journey we all experience.

I have continued to work with the holistic therapies that have supported me throughout this journey. And I've taken heed of one piece of consistent advice from everyone I know who's had radiotherapy- to start using a moisturising skin product before feeling the need to do so. There are so many creams available and I have chosen to use an Aloe Vera Gel. And two thirds of the way through treatment I am just beginning to feel a bit of soreness around the radio area (aka my still blue and already battered, poked, prodded, felt and generally knackered left breast!).

There is definitely a tiredness that comes with Radiotherapy. But for me its been nothing like the deep fatigue of chemotherapy. There's been no nausea, achiness or stomach cramps like I had with chemo. In fact I've rather enjoyed the tiredness of radiotherapy as its a tiredness that just wants to sleep rather than sleep off side effects.

The one thing I have noticed over the last couple of weeks has been a definite increased sensitivity. I guess its normal to feel emotional when I hear that bell ring at the Rosemere. The sound marks the end of someone's treatment journey. I feel that familiar lump in my throat that is made all the more intense by the reaction of folks in the waiting areas. The vast majority of people spontaneously put down their books, cuppas, puzzles and pause a moment to smile and clap. its one of those occasions of almost overwhelming solidarity and connection with those around me. And as time has gone on, I've tried less hard not to cry.

That emotional sensitivity extends beyond the bell though and I've found myself feeling things far more acutely. It may be the hormone tablets but 'turning into a soft get' isn't anywhere to be found in the contraindications! It may be a readjustment to feeling anything after the last few months of managing my state extremely well and staying pretty level and balanced for much of the time. When I first noticed the emotional stuff, I just assumed it was me being too sensitive and dismissed these feelings, giving others the benefit of the doubt in all situations. However, I am so grateful to the folks who I have confided in over this as they've helped me find some clarity and supported me in allowing myself to 'feel' what has come up. And there have been situations where I have felt hurt, rejected, unfairly criticised, misunderstood and taken advantage of. My immediate reaction has been to assume I'm at fault or out of balance. My normal way of dealing with this would be to keep my feelings to myself, assume I was in the wrong and give the source of the hurt the benefit of the doubt. Those closest to me who have observed situations and objectively reassured me that my reactions are natural, normal and justified have helped me greatly. No, I wont allow myself to sink into self-pity or blame. But to see that others aren't always coming from a place of fairness and love is a prerequisite to being able to see its just their stuff and nothing I need buy into or lose sleep over. Neither will I 'toughen up'. Its good to feel but so important to observe those feelings building, approaching and then allow them to trot on their way!

Without a doubt I've found myself with so much more energy as the chemo has left my system. Chris and I had a couple of nights away last weekend and I enjoyed a walk on the beach as opposed to sitting in the van watching Chris and the dogs having a walk on the beach! Its been great to get back to some teaching and I'm finding so much of what I've experienced this last six months is giving me a fresh outlook on teaching Mindfulness. I really do have so much to be grateful for and to look forward to!

So, in terms of the four parts of the treatment journey, the first leg (surgery) is becoming a distant memory (or maybe that should be 'mammary!'). The second leg (chemo) is over, with just the occasional bit of physical stuff coming up (my eyebrows and lashes fell out last week which is, apparently, a delayed reaction to chemo!). The third part of the journey (radiotherapy) will be over this time next week. So that just leaves the ongoing stuff- the 'one a day for ten years' Letrozole tablets, Herceptin injection every 3 weeks for most of the rest of this year and other infusions to deal with the effects of the treatment. So if this was a dance, it feels like I'm well on the way to the last Tango, or at least the bit towards the end of the disco where the DJ plays 'Come on Eileen' to get everyone up on the dance floor!

Once again, many thanks for taking the time to read this blog. Your support and comments are greatly appreciated and really have helped so much over these last seven months.

Liz x