Radio 1- or not!

Well I certainly enjoyed the break between Chemo and Radiotherapy. When this treatment plan was originally explained to me, I'd hoped one kind of treatment would just merge into the next. I was disappointed to learn there had to be a break. I guess my reasoning was that chemo made me feel grim and Radio would make me feel grim. So I may as well have one long, continuous crock of grimness and get it over with! However, I do now understand the need for the recovery time. And bit by bit, day by day I started to feel better and have more energy as my body became free of the chemicals. It felt like waking up after a  long sleep. And somehow the world started to look like a brighter, more colourful and happier place. There was lots of fun during this time- humour is healing in itself. And I found myself enjoying doing things I'd previously seen as chores.

However, finally it was time to start Radiotherapy and off we went to the Rosemere Centre in Preston. I'd previously been to this department for my pre-treatment CT Scan and had been struck by the sheer size of this unit. I'd also been relieved to find there were smaller areas within the vastness of the provision. And the friendly café, run by volunteers is at the heart of the waiting area. This space does indeed feel more like a coffee shop than a hospital waiting room. The day I went to start Radio, we were sent down to the waiting area for one of the eight treatment machines they have in the department. During the introductory chat with one of the radiographers, we learned that up to 200 people a day receive radiotherapy at this hospital. There is also a chemotherapy unit on the floor above. One of the things that has struck me throughout my treatment has been the sheer number of people receiving cancer treatment. Its such a taboo subject that is seldom spoken of except in hushed tones- and with little optimism. Now I realise this is so common. And there was me thinking I was special!

As Chris settled down with a cuppa and a copy of The People's Friend, I was invited through to the little vestibule changing room and given a gown. Now its not that I'd been listening to concerns about 'the rays' but when I discovered the wrap-around gown had 3 arm holes I confess I was a bit concerned. What mutation was this treatment going to cause?! (Best of all is that I get to keep the gown throughout my treatment so we can have hours of fun at home with it!)  

Next I was taken through to another big machine and invited to climb on board. Lying in masonic pose with just my left breast exposed, the technicians set about marking my body for treatment based on the measurements taken during my previous scan. Numbers were shouted across my body and I felt as though I was being prodded but it tickled too. Then I suddenly realised they were drawing all around by breast. It really had the feel of some weird student drinking game and I decided the best thing to do was probably close my eyes and explore one of the places I go to during meditation. I had no sooner set off across the meadow towards the mighty oak tree when the guy in charge explained he wasn't happy with the measurements. Another radiographer was called and then another, then another. Eventually, they decided between them that the original measurements and treatment plan weren't quite right and it was best not to go ahead and start the Radiotherapy. I was sent back out to the waiting room and someone went off to see if they could rescan me that afternoon. As we'd been there much longer than expected, Chris had to leave to get to work so left me on the unit.

Fortunately, a slot was found for me to have the necessary scan without too much of a wait and before I knew it, there I was lying on another slab with two lovely folks scrubbing the pen marks off my chest and side. Once the scan was completed I was given a new start date for just a few days later and allowed on my way. This was when I realised I'd left my coat and money in Chris's car! I'd planned to walk up to the main road and get a bus into Preston then either a bus or train to Chorley. No way did I have the energy to walk and I didn't rate my chances of passing motorists picking up a bald hitchhiker in grey joggers looking for all the world like an escapee from an institution!

As I sat in the waiting room I felt a rather familiar sensation creep up on me, some old stuff- abandonment, alonenesss, rejection? The one thing I knew was that it was most definitely old stuff! Two lovely friends contacted me to offer to come to pick me up. So no way was I abandoned. However, there was old self-doubt stuff floating around which was rooted in some kind of fear. So I decided to stay where I was and look it in the eye. Plus, sitting in a waiting room of cancer patients would surely give me some perspective and make me count my blessings! So I arranged for Chris to pick me up on her way back from The Hub, got myself a nice cup of free tea from the lovely folks in the café and sat just being for an hour or so. Looking into the greyness allowed me to see that familiar sensation for what it was- old, in fact probably ancient, hurt. The thought chain to this hurt has been rattled over the last couple of years by exposure to incompatibility of expectations around 'friendship'. I give thanks for this experience now as it has allowed me to reaffirm some core-value personal stuff while accepting others may have different values. Whilst I reserve the right to take care of my own wellbeing through distance and removing myself from the source of pain, it is not for me to judge others who do not share my values. For some, the need not to need anyone stifles the potential for trust, love and the beautiful gift of being able to make the time to walk with others as equals. I love and cherish those gifts. By the time Chris came to pick me up, I'd looked into the fear and sent it packing. Another beautiful gift in this 'health stuff' situation!


This little set back gave me another few days respite from treatment and I had a thoroughly lovely weekend of Sound Baths, Drumming and pottering at home. By the start of the following week, I was feeling as 'normal' as I can remember feeling! Like before treatment started but even better with an improved diet, no alcohol and an awareness of the need to rest before I need to. I even had a day of gardening and took a van load of rubbish to the skip. And the new, sensible me chose to stop before I was completely knackered and have a snuggled up evening by the fire.

And finally it was time to start Radiotherapy- and I went to this treatment alone as Chris was working. I was so impressed with the thoroughness once again as each measurement was carefully checked to ensure the treatment was as effective and safe as possible. In some ways the radiotherapy was a bit of an anti-climax after all the thrutching around shouting out numbers, scribbling on my body and ensuring I was in exactly the right position and was taking exactly the right length of in-breath. However, I am aware of the build-up effects of this treatment and won't be adding it to my list of favourite things along with 'raindrops on roses and whiskers on kittens' any time soon. I'm happy to continue the dance for another three weeks and my outstanding memory from Radiotherapy treatment 1 was when two young men were manoeuvring and drawing on my left breast. Suddenly there was a rather firm bit of poking which made me smile. The young man responsible reassured me "that's just my ruler you're feeling there!" Oh I say!

 

Liz x

The treat of a treatment free fortnight

I think its fair to say that I thoroughly enjoyed the break in between Chemotherapy ending and Radiotherapy starting! I guess its that banging your head against a brick wall thing- you kind of get used to it but its so good when it stops! Bit by bit the chemo side-effects started to wear off. Strangely it was their new absence that made them noticeable. The metallic taste in my mouth became less and my taste buds seemed to wake up or emerge from wherever they'd been-

            "Hellooo- Mmmm is that chocolate I taste?!"

The stomach cramps became less frequent. In fact, one of the gifts in this treatment is that I now have meds to deal with naturally occurring IBS that I'd previously left untreated and just accepted as normal for me. Added to this, I have more of an awareness of foods that irritate my digestion and those that make my little enzymes sing with joy!

One of the things that hung around for longer was the skin irritation and again that gave me the opportunity to try antihistamine and different moisturisers and soaps that work for me. And gradually, bit by bit, I felt my energy levels rising. Yes, there were a few occasions when I overdid things and ended up back in bed. But I recognise when I do need that rest and these little set backs are becoming fewer and fewer. Most of all, I accept that its pointless to keep going when I feel the fatigue kicking in. Resistance is futile and I really do enjoy curling up and resting in the quiet with my hot water bottle and whichever of the beasties is on the 'cuddling up with Liz' rota at the time!

After my Radiotherapy 'tattoo' session I had a full fortnight of no treatment. During this time I had some days off, meeting friends for lunch or coffee and just enjoying being in company and chatting with folks. I really did have the feeling of being on holiday. And I felt a deep appreciation for being able to do things I'd previously thought of as mundane, with a renewed energy and enthusiasm. Just filling the bird feeders at home and watching a beautiful array of little visitors to the garden. Even taking Nessidog to the vets to get her anal glands attended to was a joy as I was so glad to have the energy to do stuff. (It has to be said here that Nessidog did not share my joy at this little excursion!) 

Indoor gardening, cleaning, doing the washing, tidying stuff, sorting out clothes I no longer wear for charity shops and generally just enjoying being at home. I had one odd experience with the plants. A few of our house plants were looking a bit neglected so I found some bigger plant pots and compost and gave them more space to grow. There was one rubber plant that had got quite 'leggy' and most definitely pot-bound. However, I didn't have a pot the right size to still fit within its plant pot holder. I promised myself (and the plant!) that I'd call at B&Q that afternoon and get some more pots. I ended up not getting the pots and arrived home at dusk. As I made my way along our lane, I noticed something in the middle of the track. A plant pot! I got out of the van and picked the pot up and took it home. It was exactly the right size that I needed to rehome the leggy rubber plant. I tell you, weird stuff happens round these parts!

During this time I found myself having a recurring conversation with various folks about the journey within and my lessons. I spent an afternoon with my lovely Pagan friend Caroline who willingly shared her wisdom of the old ways which made so much sense. A couple of days after this I was at the Manjushri in Ulverston for some Meditation time and a talk. Again a very similar message. A few days later I spent time with a wise Reiki friend which brought further clarity. I am so grateful to genuine friends who have made time for me and welcomed me into their homes just to be and share. Such precious time and space.


  And of course the wonderful Hub folks who I share Meditation with and so willingly give of their awesome collective and individual wisdom. And how much beautiful humour we have shared over these months!

And my conclusion from this 'Winter of Content', this journey within? I can't speak for anyone else but I realise I only ever react from one of two places- love or fear. The thoughts and feelings that come up when responding to a situation tell me which place I'm coming from. So I have a choice in how I choose to behave in response to those thoughts and feelings- with love or with fear. What I'm exploring just now is ways to shift the reaction from one of fear to one of love. And once again I'm finding that it is behaviour change that leads the way to healthier thoughts and feelings. Kindness is a pretty obvious choice- and humour too. I'm aware there are still so many lessons to come and I'm happy just now to sit with them and allow them to unfold.

In the midst of this down time I had my Oncology check up. This was at the same hospital where I previously had a very long wait when I was feeling quite poorly. However, it was with a different specialist- the Oncologist who I've been with throughout chemotherapy. The one who has helped so much in prescribing to alleviate side-effects. Arriving at the waiting room this time we were greeted by the same nurse who was so apologetic after our long wait. Also there was the assistant doctor to the specialists. They could not have been kinder and I had the opportunity to explain exactly why I had been so upset last time we met. Just having that conversation was healing in itself.

I was also delighted that my lovely breast care nurse from Burnley came to this appointment. She's been a consistent face since the day of diagnosis. Back in September she called in to see me before surgery just to sit a while during what was a potentially anxious time as a procession of nurses, anaesthetist, surgeon and more nurses called into my cubicle to ask me my name, date of  birth and post code. It was her who supported me through the lymphedema infection and made time to change dressings and generally reassure me.  And her friendly face at this latest appointment was very welcome. Especially as she made time to fully examine my armpit and reassure me that the bumps, lumps and discomfort in there are quite normal. Advice regarding exercises I can do to help break down scar tissue once again empower me to take responsibility for helping myself. 

It was at this appointment that arrangements were made for the final part of my treatment journey. The ongoing hormone medication was prescribed- "take one tablet a day for 10 years"! As my cancer was oestrogen receptive as well as protein receptive, this medication is to get rid of any remaining bits of post-menopause oestrogen that may be lurking so there is nothing for those naughty cells to feed on. (There are side-effects but I'm a week into this treatment now and still no testicles so wey-hey!)

As the start of radiotherapy approached we had a further day out playing with singing bowls in St.Anne's, some wonderful time sharing Mantra and much Hub hat frivolity.

Yes I thoroughly enjoyed the treat of a treatment free fortnight. Best of all during this time was feeling 'normal'! And by that I mean starting to feel like my proper, improper old self again! And as the sun rises earlier by the day and the nights stay lighter for longer, I'm feeling myself emerging from that Winter of Content. I don't think I've ever appreciated Spring as much- I am truly loving this one!

                                                                                                                                    Liz x




 More of those Happy Hats and Happy Hubbits! x

 

The next leg

The week after my final chemotherapy treatment was a strange one. I think on one level I'd thought that was that and I could go back to being busy. My sensible head knew that I needed time to recover not just from treatment 12, but from the whole course of 12 cycles. However, I caught myself a few times feeling frustrated that I wasn't able to do more and cross with myself when I did too much and felt grim as a result. I guess the main thing was that I caught myself when these thoughts and feelings came up and was able to cut myself a bit of slack and be kinder to myself.

That said, I was able to get some practical admin things sorted, including some stuff which, the week before, had felt overwhelming. And it was so good to return to The Hub on Thursday and be back with my lovely Relaxation and Meditation group. That day we also took the van in for service and I stayed for the afternoon drumming circle. In fact, I felt quite 'normal'- whatever that means! No stomach cramps and I noticed I was starting to taste my food a little more. And with the nights drawing out and having that bit more daylight at the end of the afternoon, Spring was most definitely in the air.

I've felt really drawn to the traditional Pagan Wheel of the Year celebrations over the last few years, in particular the Summer and Winter Solstices. This year for the first time I've really connected with Imbolc. Having entered my own 'Winter of Content' at the end of last Autumn, I'm starting to get glimpses of life beyond treatment and the days ahead promise to be lighter in every way. It was good to have the time to read more about this celebration, the symbolism and rituals. I remembered how important it had been for me to plant spring bulbs last Autumn. And seeing them coming through the ground now is so positive, poignant and reassuring. 

Eight days after my last chemotherapy treatment I was back on the oncology unit for my Herceptin injection. I was glad I'd chosen not to ring the bell the previous week as I think I'd have felt a bit of a plonker if I'd made a fuss about the end of one lot of treatment only to be back there again so soon! The Herceptin part of my treatment, that deals with the protein receptive element of the cancer, will continue for most of this year in the form of an injection every 3 weeks. The main side effect of Herceptin has been a headache and I prepared for this by taking paracetamol before setting off for Burnley. I think I was feeling a bit smug- here I was just having an injection where previously I'd have had a cannula fitted and be rigged up to the chemo drip for a few hours. The injection itself was quick and, to be honest, it was lovely to see the staff on the unit. So welcoming, supportive and encouraging from the folks on reception through to the nursing staff who carry out the various procedures with little fuss and lots of reassurance. I had my pre-injection consultation and Chris went off to the pharmacy to pick up some meds I needed while I had the injection. It lasts longer than an ordinary injection as the chemical has to be put in slowly over a few minutes. However, after the initial sharp and a bit of a stinging sensation its quite painless.

As normal after Herceptin, I slept a lot in the evening. The following day we'd planned a trip out and I woke with anticipation expecting to feel so much better not having had the full chemo treatment. However, the truth was I felt crap! I just didn't get this and went on to feel annoyed at the waste of a day. It was the afternoon by it dawned on me that not only had I not had the Paclitaxyl chemo, I'd also not had the usual premeds of stomach protection, antihistamine and meds to prevent nausea. Understanding what is happening is the first step to feeling better and I dipped into my mobile chemist shop for nausea relief and stuff to deal with skin irritation and that familiar Herceptin headache. Giving into to my body once again and letting myself sleep allowed the healing to kick in and by Sunday morning I was feeling much better. So much so that we went to and thoroughly enjoyed a powerful Imbolc Gathering at The Dojo.
 
It was good to be in the company of so many positive folks and the mix of learning, sharing and support was so uplifting and empowering- not least some truly awesome drumming! Having time at The Hub afterwards just doing a few jobs was also uplifting and left me feeling useful and more connected to the place. We had time for an afternoon nap at home before going over to Accrington to share a Sound Bath with some more lovely folks. As always happens after drumming and working with the Gongs, I slept well that night and woke up feeling so much better. For the first time, the taste in my mouth that I've had since chemo started was less noticeable. That more than anything else was a tangible indicator that the chemo part of my journey was finally over!
  
Monday morning saw us heading off to Preston- another day another hospital! We'd heard horror stories about parking so set off early and got parked up easily. Yes the Rosemere Centre is so much bigger than the unit in Burnley and I did initially feel quite overwhelmed by the sheer volume of people. But a friendly welcome at reception and then a small comfy waiting area with the offer of a cuppa made all the difference. This was my pre-radiotherapy scan and 'tattoo' appointment and I was seen promptly and greeted by a friendly radiographer who fully explained the procedure. I must confess to being a tad nervous when I saw the stirrup contraption attached to the bed and it was a great relief to learn that this was for my left arm rather than a leg! My arm had to be out of the way to allow the measurements to be taken that will enable the treatment to be targeted at exactly the right spot. I was helped up onto the machine and every stage of the process was explained thoroughly. This treatment may involve holding my breath for up to 20 seconds to move my heart out of the way so it is protected from the radiotherapy. I was reminded of the subtle power of language when one of the radiographers talked about where my tumour "is". She corrected herself immediately to where my tumour "was". And what a difference that one subtle change makes. My two tumours were removed last August with follow-up surgery to ensure a safe margin of healthy tissue. The adjuvant treatment that has followed is a clean-up operation to prevent further problems. I'm comfortable with that and I suspect my reaction to the "is" word was quite obvious! I know where I'm at with my journey- no detours or alternative routes allowed!

After lots of measurements were taken and a few marks made in the middle of my chest and on my side, two indelible marks were left for future use. Not the butterfly tattoo I'd perhaps have liked but preferable to the skull and crossbones I'd feared!
My appointment to begin radiotherapy is the first possible date after the 3 week gap after chemotherapy ended, so treatment will begin on a Friday and end 15 days (excluding weekends) later on a Thursday. 



The Rainbow flag flying over Preston Hospital as we left the Rosemere Centre felt like a bit of an omen. We've been involved in some tough battles over the years. How much calmer and less aggressive is this funny old dance with cancer!



So that's me on the third leg of the journey! But before the journey recommences for real I've just over a week of chemo 'recovery time' left which I must confess I am enjoying greatly. Yes, I am tired- a deep tiredness that only becomes really obvious when I do too much. Listening when my body whispers so it doesn't need to shout and resting before I'm tired have never been so important. And as resistance is futile, I willingly comply!

                                                                                         Liz x