Planting seeds and going within

Having reached the half way point of my chemotherapy treatment it seems a good time to take stock and view the bigger picture of this journey. There has definitely been a build up of some of the physical side-effects of the treatment. I am choosing to keep a positive focus- however, these physical effects include stomach cramps, aching joints, alternating constipation and diarrhoea, nausea, mouth ulcers, excema-like skin irritation and a loss of flavour with a permanent unpleasant taste in my mouth. Listed together that makes for quite a grim catalogue. However, the individual nature of the care received has brought the right treatments along just when they have been needed. Remember that kids' game 'WHAC-A-MOLE' I believe its called. Little creatures pop up and get bopped with a hammer. The physical side-effects of chemo feel a bit like this. Each symptom pops up and gets medicated. Then another one pops up and gets medicated. On a good day, it's one thing at a time. As the treatment progresses, there seem to be more moles popping up to be whacked- and sometimes they seem to be hunting in packs!



Having said all that, there are good days, or at the very least, good parts of days. After treatment 6, I felt well enough to go to our Chanting Circle on the Wednesday evening. Powerful Mantra in lovely, supportive company. I always sleep better after Mantra and my sleep has generally been better for the last couple of weeks. The following day I shared Relaxation and Meditation with the wonderful Thursday group. However, I didn't feel up to Drumming so had a rest upstairs listening to Chris lead that lovely Thursday Circle. Though I didn't feel up to Temple Gongs on the Friday or the Accrington Sound Bath on Sunday, after resting until Saturday afternoon I thoroughly enjoyed the Community Sound Event in Chorley. Its all about balance really. Working with Sound in all its forms is healing. But I accept I can't do everything and, as a wise friend put it recently, I need to learn to cherry pick what I actually do. And the gift in this? Chris gets to develop her Sound work. The thing with the Gongs is it is the Gongs that work their magic. We are just the flesh at the end of the mallet. And Chris has such an ego-free humility which means there is certainly no problem with me resting when I need to as the Gongs are in more than capable hands.

Having made the decision to have the PICC Line fitted, my veins suddenly became cooperative in week 7! Monday's blood test was trouble-free and the cannula went in first time on Tuesday. Once again my bloods were fine- which I put down in no small part to Sanctuary treatments and kindness. I am so very grateful for the lovely therapists who have been treating me and for the other folks there who support and make me feel so welcome.


Each time I go into the chemo lounge I walk past that heavy, distinctive bell. I so look forward to the day I can ring it at the end of my final treatment. This week it looked particularly impressive next to the lovely Christmas Tree.

If the weeks of reluctant veins were difficult for me, they must have been equally or more so for Chris. She sat there watching as the attempts at finding a vein got less productive. She never faltered in her support, kindness, encouragement and humour, though it was most certainly not easy viewing at times. But we had made the decision early on in this journey to travel with humour. If our journey with chemotherapy were a dance it would most likely be a giddy fusion of Agadoo and Gangnam Style!

One lovely surprise at treatment 7 was bumping into the couple we met at my last Oncology appointment. She was having her first chemo treatments- split over two days just like my first Herceptin and Paclitaxel were. So I saw them when I went for my blood test on Monday and then sat in the next bay during Tuesday's treatment. We all have our own individual journey but there's something very special in the solidarity of shared experience- and the unspoken commitment to positivity.

I think its fair to say that the days immediately after treatment 7 were the worst so far. Too many moles popped up for whacking and this took its toll on me physically and, for the first time, emotionally and mentally. I think its also fair to say I was really unpleasant to be around. No one could have blamed Chris if she'd taken a hammer and whacked me on the head! This was particularly so on my birthday so I decided to take myself off to visit the churchyard while Chris was at The Hub. Not all my family are buried in the same grave on account of the popularity of cremation from the 80s onwards. However, I feel one particular grave in Sutton is my focus for all those who have gone before. And this is the place I
visit with a cross-shaped wreath for my Nana's grave each December. There is something peaceful about just being there. Yes there have been sad occasions at this church but I feel a sense of groundedness and connection and walking around the cemetery in the late afternoon gave me a perspective I'd been lacking. When I first moved away from home, I used to try to visit on my Birthday and arrive at the moment I was born. (We think this was 6.15pm, though as I also coincidently weighed 6lb 15oz there is a slight chance that Dad rounded up what he was told when he went out to the 'phone box and rang the maternity home to learn of my birth!) These days I sit awhile at that time and just send my gratitude to my parents for the sacrifices they made and for their undoubtable love. The time in the quiet this year brought some insights. This was in the form of awareness of some unpleasant energy stuff. No need to go into detail but I'm grateful for the folks in my life who get this stuff and were able to advise and support me in getting back to basics and dealing with it.

By the following day the greyness was starting to lift and I had a lovely afternoon at The Hub surrounded by some of the most genuine and kind people I know. A lovely cake surprise brought the emotion of gratitude and love that drove out the last of the greyness. I am so very grateful for my beautiful Tribe. And if my Vibe really has attracted these folks into my life then there must be some pretty positive energy floating around despite those occasional blips when the claggy stuff starts to seep its way in.

I have written before about my 'Winter of Content' and my awareness of the need to go within as treatment progresses. However, this has been easier said than done as I've continued to push myself to do as much as possible, with occasional breaks when I've needed them. I'm very fortunate that up to the half way point in my chemo treatments I've been able to still do quite a bit. However, I am aware now that this is changing. It feels like a seesaw has rebalanced and its now a case of resting and doing stuff occasionally when I am able to. Yes I've resisted this and part of the low mood on my birthday was, I think the realisation dawning that over the next month or so I'll be doing less and less. This week's Solstice celebrations have helped massively in this process of acceptance.

On Friday, as the sun set on the shortest day, Chris and I joined with Caroline and a very full Dojo to honour the old ways and celebrate the Solstice with the Gongs. The following morning I woke early and felt drawn to have my own
personal Solstice
ceremony of cutting cords, releasing stuff that no longer serves me and playing the Gongs(particularly Pluto who was with me at the Summer Solstice at Stonehenge back in June) as the sun came up. Then on Sunday I was able to take part in the Earthsong Winter Solstice celebration in the Dojo. This was a very special event and particularly poignant for me as it marked the end of resistance.

As part of the ceremony, I committed to nurturing three 'seeds'- 'Health', 'Peace' and 'Community'. The common thread that links these seeds is 'Freedom'. And now, as my Winter of Content really settles in, as I start to listen not just to my body but to my Soul, as I accept the need to rest and heal, I find a new contentment in the knowledge that just now there really is nothing to do. And as we know, when there's nothing to do, the thing to do is nothing. Time just to Be. Time to Heal. Time to allow those seeds to rest in the deep, dark earth and await the Spring.



So, as I write this on Christmas Eve, I Thank you for taking the time to read this and previous posts. And to those of you who have commented, sent messages and generally been supportive and encouraging, I thank you from the bottom of my heart.

Wishing you a very Happy Christmas and all the very best for the New Year.







With Love and Gratitude...Liz x

 

 

 

 

 

Half way there- living on a prayer!

Bonfire Night seems ages ago! And that was when I had my first chemotherapy treatment. And here I am now at the half way point. This week's blood test showed once again that my white cell count and Neuts are holding their own at a healthy level above that required for treatment to continue.  This week, my chemo appointment was later so I called at The Sanctuary on the way for a blast of Theragem. This gave Chris time for a well earned bit of Sanctuary chill-out time, though she tells me she abstained from cake!

We took the scenic route over to Burnley and played one of my favourite in-car games "what did it used to be called?" Nothing complicated, it just involves shouting out what it used to be called every time you pass a Burnley school. And I'd barely had time to shout "Gawthorpe, Ivy Bank- oh bugger what was that other one called?" before we were pulling into the one available free chemo parking space at the Hospital. 

The unit was the busiest I've ever seen it. It never ceases to amaze me how many people are having chemotherapy treatments. But, as always, we received a friendly welcome and waited a very short amount of time before being taken down to the Green Orchid room to have the cannula fitted. I get a bit excited when trying out a new treatment room and this was my first time in Green Orchid. (I do love the happy, bright colours). However, I don't think my veins liked the green as no way were they cooperating. They'd been a bit reluctant the day before at my blood test appointment and one of the Sisters was called in after the second unsuccessful attempt to extract blood. The problem is, my left arm can't be used because of the lymph thing. The veins higher up in my right arm are knackered so this means my poor right hand is taking a battering with the weekly blood tests and chemo. However, on this occasion all seemed well as the needle found a good vein straight away. Sadly all was not good as my hand swelled up in spectacular style as the saline test was injected. I love the way the nurses humour me and my sense of humour. I warned this one that her colleagues would probably go into hiding if she went for help. She went for help and came back laughing. "I think you're right, they're all hiding!"

The same Sister as Monday came to the rescue and did the deed. Not before we'd had a chat about me having a PICC (Peripherally Inserted Central Catheter) line fitted. This had been offered at the start of treatment but I didn't fancy the sound of it so persevered without. I don't know what it was about the thought of having a tube inserted into my arm and shoved round my body until it reached my heart that was bothering me really! But its looking like it will become a necessity and I'll have the procedure at the next available appointment- probably after treatment 7. Once again I so appreciate the consideration of the nurses as they reassured me that the appointment will be booked, but if I decide against the procedure that will be fine too. So I've been looking into this PICC thing and, once again, folks who have walked this path before me have come along with  reassurance and advice. Through Mother Google I've seen photographs of people living quite normal lives with a PICC line. There seems to be a wide array of covers and protectors to enable even the most extreme of pursuits. I just need to check that Mountain Biking and high board diving are not compulsory and then I'll be a willing and fully paid-up member of the PICC club. The photos of PICC folks  sunbathing round a pool are very inviting though it has to be said and Chris is quite excited at the prospect of a holiday. I may even get to be a flying PICCit !



Treatment 6 itself was easy and quick with the Piriton sending me off to sleep within minutes. There is something comforting about drifting in and out of sleep with the hum of the chemo lounge in the background. Snap-shot conversations, nurses checking in on people, occasional laughter all punctuated by the beeping of machines as they finish administering the various parts of folks' treatments.


Back home I went straight to bed and slept with the dogs and cats taking it in turns to keep me company. I've been sleeping so much better generally since a lovely lady came to see me with some homeopathic help. In fact, my sleep improved even before I'd tried any of the stuff. A definite reminder of the power of intention and the healing potential of kindness.

So, half way there! I don't think I had many expectations back in November driving to Burnley as the nation prepared to burn effigies of 16th century anti-parliamentarians. There were definitely images that weren't always helpful and I hope sharing and deconstructing some if them here in this blog has been helpful to others. So here we go- chemo journey part two! Many Thanks to folks who continue to read and offer support and encouragement. You really can have no idea how valued and appreciated that support is.

                                                                                   Liz x

Hats, happy cells and chance meetings

I think its fair to say I was half expecting my 5th chemo treatment to be deferred. I'd felt a bit grim over the weekend and wasn't sure if it was the effects of the previous week's Herceptin or an infection of some kind. Before chemo started, I was told to buy a thermometer and check  my temperature if I didn't feel right. If the reading goes up to 37.5 I need to check again in an hour. If it hits 38, I have to phone an emergency number and get to hospital for IV antibiotics. I've found the thermometer test a real comfort and reassurance as, though my temperature has crept up a few times, its not gone over 37. There's a danger, however positive you try to be in all this malarkey, of catastrophising minor symptoms. I use the thermometer as evidence whenever I drift towards drama and need a good self talking to! 

I'd had an easy drive back from Kendal on Monday
morning (after the Yoga and Sound Retreat) to have my bloods done. The rest of Monday I rested and had a treatment at the Sanctuary. There was still that niggle about my blood count but a bit of a reframe around 'a rest might be a good thing' got my ducks back in a healthy row and Chris and I set off for Burnley on Tuesday morning as usual, singing a happy little song!

First port of call was my Oncologist appointment. Inevitably this involves a wait. However, I remember how thorough my first appointment was and how willing Dr Badea was to answer questions. Somehow waiting doesn't feel too bad when you know its probably because the person in the consultation room needs that time and attention. And on this occasion there was definitely a gift in the waiting situation. There were no chemo parking places free so Chris dropped me of and went to park, with our usual little joke about it being easier to go back to Blackburn and get the shuttle bus over to Burnley! I went to register for my appointment and was greeted by the volunteers who run the desk in Outpatients. There's one man there who always goes out of his way to show me to the self check-in screens and I really appreciate that kindness. Sitting in the clinic waiting room a few minutes later I met a lovely lady who is having the same treatment as me. Herceptin every 3 weeks and Paclitaxel weekly. It was good to chat and share our experiences. There are some things that people can only really get if they've been there themselves, and there is something reassuring in the solidarity that comes from shared experience. Next, another lady came in and joined the conversation. She was there for her annual check-up having finished her treatment four years ago. The wisdom, perspective and inevitable humour that she brought to our little gathering was both reassuring and comforting. Finally, a couple joined us. I sensed an edge to their comments and they were less than pleased to learn of the wait they faced. One of the nursing staff came to apologise and took orders for hot drinks and Chris explained she'd met the family who had gone in to see the oncologist some time ago. It was clearly the lady's first appointment and she was understandably distressed. This led our conversation into an appreciation of the time we are given just when we need it. With this the new arrivals to the waiting room visibly softened and went on to share that the lady had only recently had her diagnosis and this was their first appointment. So all in all the waiting gave us that beautiful gift of synchronistic connection.

When it was my turn to see Dr Badea, I confess I was a bit nervous on account of the blood count thing. However, there was no mention of deferring treatment. In fact she was really pleased with how it was going and began the referrals for the next stage of treatment- two weeks of radiotherapy when chemo finishes and follow-up medication. I was able to share concerns about the side-effects I'd ben experiencing and for each issue raised, I was given explanation, clarity and medication. I remember before the first operation in September, I couldn't recall the last time I'd taken medication, prescription or otherwise. Now I have a drawer that would rival a pharmacy. But I'm grateful for every bit of pharmaceutical assistance along this journey.  I didn't mention my blood count to Dr Badea just in case and we went off to the chemo unit for treatment 5. 

Once on the unit with my treatment OKed and cannula fitted, I enquired about my blood count. My white blood cell count had gone up from the borderline 3.1 to a healthy 3.7. The neutrophils had gone up from 1.8 to 2.1. The only thing I'd been doing differently was the treatments at The Sanctuary of  Healing and its certainly been the difference that has made the difference and allowed me to continue with the chemo regime. And the bonus on this occasion was rice pudding with my lunch! I called for a Sanctuary treatment on the way home and had a good long sleep and a rest day on the Wednesday.


Thursday was a normal Hub day with another 
happy hat waiting for me from our Head Gardener! I also received a very precious parcel of hats that belonged to a much loved friend. The kindness that has come with the 'happyhats' thing just blows me away! Relaxation and Meditation Group and just time being around positive and kind Hub folks is healing in itself. Two lovely ladies called in to bring me some homeopathic help with sleep having read a previous blog. This and a beautiful Chakra gift for The Dojo are so appreciated. Preparations for the weekend's Retreat were a bit easier than usual as we'd been able to leave stuff up at the house the previous weekend. So I was able to go home for an early, long and restful night. Friday brought an easy journey back up to Kendal with lots of time to get set up and ready for our Inner Harmony Retreat.   

One of the gifts from my health journey has been Julie and Chris getting more directly involved in the Retreats. I know I call them 'The Holistic Chuckle Brothers' but they are truly awesome and give so much. To me and to everyone fortunate enough to share with them. The weekend was lovely and I felt well throughout, taking part in most things and just having a bit of an early night on Friday. I do feel very blessed to have been able to honour existing commitments that were already in place before my diagnosis. One of my core values is going ahead with things I've said I'll do and it means a lot that I've been able to do that with the Retreats. The help received in this is so very much appreciated.


A beautiful day greeted us on Monday morning as I set off back for my blood tests and what a lovely journey it was. Blue skies and clouds so spectacular and changing throughout. A Hub and Dojo afternoon with lots of light-heartedness was the perfect end to the weekend before going home and once again sleeping soundly and deeply. This weekend felt quite significant it as was our last Retreat of the year and I'm taking a break until March. I'll still be involved at The Hub but am definitely feeling the build up effect of the chemo so will be resting more. I feel very fortunate that the things I love doing the most are the things that are good for me. So my Winter of Content continues. And the glimpses of Spring are rather wonderful too!

Liz x

 

I almost got it right and finding the gift

Well the '#111 days of happy hats' thing on Facebook has certainly brought colour and humour into this journey! Its lovely how folks have embraced this and there's hardly a day gone by recently without another headwear creation finding its way to me. All confirmation that I have some pretty wonderful folks supporting me along the way!

Treatment 4 included the three-weekly Herceptin injection- this is the part of the treatment regime that targets the 'protein receptive' aspect of the cancer cells. Its an expensive drug and I'm really fortunate to be receiving it. So off we set for Burnley on another crisp winter's morning. In my mind I've had a pretty set in stone schedule for this treatment. Herceptin injection every 3 weeks for a year, chemo every week for 12 weeks, a couple of week's radiotherapy then on-going meds in tablet form. So by my calculations, the last chemo would be at the end of January. There have been a couple of potential obstacles to this recently though and I'm aware of reacting to these perhaps a bit more strongly than is good for me! Firstly, my weekly chemo would fall on Christmas Day. It appears I can either have a full week off or move to the Thursday after Boxing Day. This messes up my 'OK by Thursday' schedule that sees me back at The Hub for the Thursday Meditation and Drumming Circles. And the thought of missing a week isn't at all appealing as the knock-on effect would be chemo creeping into February. But perhaps the most concerning potential obstacle has been the impact the chemo is having on my blood count. I have the weekly blood tests to monitor this and, by week 4, my white blood cell count had dropped from 5.3 to 3.1. The other significant part of the count is the 'neuts' (neutrophils which fight infection) which had dropped from 2.8 to 1.8. If the count drops below 3 and 1.5 my weekly chemo will be deferred to allow for recovery time. And the knock-on effect is the overall treatment period  being extended.



Treatment 4 felt quite significant- a quarter of the way through and it was a relief my blood results were just within safe limits to go ahead with chemo and Herceptin. Shortly after arriving at the unit we were taken into the orange Marigold treatment room to have the cannula fitted. The nurse had a medical student with her and, remembering my experience with the A&E doctor back in September, I consented to him inserting the cannula. Chris checked out that he was a 4th year student. Or, as she put it, "You're not on a school work experience placement are you?" The poor lad tried to reassure me with "I'll try my best, I almost got it right on the last patient." But in fairness, how are student doctors going to gain the experience they need if folks don't let them practice on them? So off he went. I think its fair to say that the finished attempt looked very good. And its probably more to do with my reluctant veins that there was a problem. The saline went in OK but there was a blockage somewhere and the nurse had to step in and start the whole process again. But credit to that lad- he almost, almost got it right! This treatment wasn't quite so fluffy bunny as usual as Herceptin whacks me with a headache but the chemo was completed quickly and we went off to the breast clinic for a scheduled talk about on-going care. To be honest, the last thing I felt like doing was sitting listening to a talk for 2 hours. But we'd been invited and it did sound like it would cover some pretty important stuff. As we settled to wait for the talk to start, my breast care nurse came to check in with us. And bless her forever, she saw I was knackered and sent us home! I'm now booked in on the same talk- next March! This was such a relief and it was lovely to get home and snooze on the sofa with the log fire blazing. We even managed to catch the last bit of Escape to the Country! 

One aspect of the effects of chemo that has been starting to get me down a bit has been the impact on my sleep. I know just being in bed is restful but the nights awake are long and there's only so many Facebook photo albums one can create before losing the will to live. This has really tested my positivity at times and the Polly Anna in me has been seriously at risk of getting twatted by the CBA bit of me. There have been some good talking tos and a significant bit of furtling around in the dark recesses of my toolkit. Wednesday night was a bit of a low in this respect. I'd rested most of the day and had a lovely treatment at The Sanctuary. I had a busy Thursday ahead that was leading into a Retreat weekend. A good night's sleep was a must really. But no- one sheep, two sheep, three- I wonder if sheep sleep standing up? Have I got enough chant sheets for the weekend? What did I do with that dietary list, whatever happened to Simon Dee..... Insomnia leads to such random thoughts! I heard distant words coming from my toolkit- 'If something isn't working try something different, try anything different'! So I got up, went downstairs and put the kettle on. And what a gift was there in the kitchen waiting for me- all three cats were home and cuddly as could be! So I had a nice cup of tea and a ginger biscuit or four while the little furry ones had some Dreamies and lots of cuddles. This was most definitely a gift in the insomnia situation and an hour or so later I went back to bed. The sleep I eventually got may have been 'Light' in Fitbit's eyes but to me is was a blessed relief!

It was good to be at The Hub on Thursday sharing the first part of the Reiki 1 course with some lovely folks. Meditation and Drumming Circles in the afternoon were followed by a 1:1 appointment before going home to make the final Retreat preparations. Friday brought an early start and a treatment at The Sanctuary. Back at home afterwards I finished sorting out the camper van only to find the engine battery was flat. Full marks to the RAC though as less than an hour later, a very, very nice patrol man had fitted us a new battery and we were ready to go.  

The Retreat itself was one of the most relaxing I've experienced. A perfect group of folks shared the space and personally I reconnected with my own Yoga practice that I'd let slip. Post Herceptin stomach cramps and a nasty headache kicked in on Saturday and I had to rest but by Sunday I was feeling much better and was able to be fully present in every way for the rest of the weekend.

I do believe that the stuff I do is helping with my healing. It is certainly helping me to deal with the treatments. There remains a massive crock of learning in this for me. The lessons aren't always pleasant but (so far) I've surprised myself by the resilience that has surfaced at just the right time. I remain so very grateful to the folks who are walking this walk with me. Yes its my unique and individual experience. But sometimes I look back down the sands of a particular part of the journey and there are so many sets of footprints of those skipping along with me. At moments like that, I feel that if chemotherapy were a dance, it would most certainly be the Conga!


                                                                                                                                          Liz x