Spring at last!

I write this at the end of the third week of growing my hair! As you may remember, I had my head shaved last September to raise money, through sponsorship, for MacMillan. I still say the real star of this project was Debra who had gorgeous long hair and came on board to support me once she found out about my cancer diagnosis. We went on to raise over £3000 for Macmillan and Debra's hair went to the little princess Trust (to make wigs for children suffering hair loss through medical treatment). At the time of Brave The Shave, very few people knew I'd had one lot of surgery and was waiting for the next. It felt right to only be fully open about it once the cancer had been removed. Part of me thought that keeping my head shaved would disguise the fact I was having chemo. However, I soon accepted, with gentle support from those closest to me, that I needed to talk more openly about my journey. And that is how this blog began.

As I had no hair at the start of chemotherapy, I had none of the physical or emotional discomfort of losing my hair. I just kept shaving it and giving my head a polish now and then! Parts of my head became totally bald and stopped growing though there were patches of growth. I didn't really give much thought to when to stop shaving my head. I guess I knew I'd know when the time was right. Two weeks into radiotherapy my eyebrows and lashes fell out which was a surprise. I was told this was a delayed reaction to the chemo so there was nothing telling me it was time to stop shaving my head. Then, for some reason, three weeks ago I just knew it was time and didn't get the razor out when I had my bath.

T0 begin with, my little cap felt like it was attached to my head by Velcro but this passed within a day and my hair has continued to grow and feels soft, thick and mostly even. My little follicles are working hard and I am gaining a rather strange enjoyment from stroking my own head. An experience I'm happily sharing with anyone who wants a feel. Though perhaps I need to tone this down a bit for strangers arriving at The Hub for treatments for the first time. There have been a few perplexed looks from folks who don't know me!

Anyway, this new growth feels symbolic to me and is so appropriate having just passed the Spring Equinox. New life, new growth, new opportunities- so much to look forward to with renewed energy and optimism.

I'm currently very much enjoying not being tied to daily or even weekly hospital appointments. Though I've got daily 'take one a day for 10 years' meds, my only remaining treatment is the Herceptin injection every 3 weeks (that continues until November) and I'm about to start the 6-monthly bone-strengthening infusions. Life feels to be settling into more of a normal routine though I find myself laughing out loud at the word 'normal'! I've been able to continue throughout treatment with quite a bit of the stuff I do work wise. And again I find myself laughing at the word 'work'. Its hard to see The Hub as work as I love it. Its also hard sometimes to know when I'm 'working' and when I'm not. Is it work to be tinkering around with ideas or adverts or playing the Gongs or even getting the books up to date? I genuinely love all of that stuff- even the books if I do it a bit at a time as there's a real sense of satisfaction in knowing everything is up to date- transparent and accountable.

At the end of last year I pulled back a bit on courses and planning. I'm really enjoying getting back to this and a new course has emerged out of what was the 'Step Out Of Thought' course. That course came about as a way of sharing a 5-part relaxation/meditation process that I'd been working with for a couple of years in The Hub weekly Relaxation and Meditation groups. I'd been reluctant to teach meditaion. Who did I think I was? Me with my busy head teaching people to meditate? Then one day I had one of those little woo-woo moments. Sat in The Sanctuary Library during the NLP Masters course I noticed a book sticking out on one of the shelves, a very familiar book that I first read in 1980. 'Illusions' by Richard Bach. And without even picking the book up, one quotation jumped into my mind 'You teach best what you most need to learn!' That really spoke to me and I set about putting 'Step Out Of Thought' together.

The original course, taught over 4 weeks, focussed on each part of that process- Breath work, physical relaxation, Grounding, Thought observation and  filtering and respite from thought through guided meditation. I felt it was right to only work with smaller groups to enable the course to be interactive and folks to feel comfortable and I began offering 'Step Out Of Thought'  in July 2017. I taught it a total of 12 times over the next year with numbers ranging from 8 to 12. There were a couple of day time courses with smaller numbers and they were an absolute delight! The last three courses I found people were returning to do the course again and I started to wonder if there wasn't something else I could be offering. 

Over this Winter, one of the things I've been sitting with is the idea of melding a course together based on Step Out of Thought, rooted in the Reiki Principles and also drawing on the practical, common sense philosophy of the NLP Mercedes Model. And when I came to start planning for Spring, the structure for this was there waiting for me. The seed sown last Autumn has germinated and quietly grown over Winter, emerging as the seedling of  'Step Into Peace'. I've run the course once now with a lovely group of 12 folks and it feels right to roll this out at The Hub and further afield. The course is rooted and grounded in practical, experiential techniques that folks can integrate into their everyday life. Though I do include some anecdotal stuff to illustrate how these practices have worked for me, its not just me chatting about my life and experience. The intention is to guide people to draw from the same resources that have worked for me without any expectation of sameness. What works for one, may not for others and acknowledgement of that unique individuality is essential to retain authenticity.

Other seeds have germinated and are starting to grow- this weekend's Reiki Support Day was one of them. There's a danger in teaching Reiki of making things unnecessarily complicated. My journey here has very much been about stripping back to the basics and supporting folks in finding their own connection with Energy and Healing within the secure structure of Usui Reiki. Saturday saw 19 Reiki folks coming together to revisit self-healing, share treatments, take part in a powerful Reiki Share in The Dojo and work in small group workshops to explore where we are at and where we want to be. All so simple. The least I interfere the better when it comes to Reiki!

So that's a quick snapshot of where I'm up to 'work' wise. I remain aware of the impact the various cancer treatments have had on my physical body. The main things I'm left with are some achy joints (Herceptin) and a fatigue that requires and responds to rest. The gift in these symptoms is that I am forced to rest and this gives Chris and I far more time to explore how to just Be! And we've continued to nip up to our bolt-hole of Meathop Fell- just 55 minutes from home where a night in the van feels like a week's holiday. 

I'm currently looking at turning the Blog into a book and any comments, feedback and suggestions about that would be gratefully received. And I do intend to continue to blog- not sure of when and how yet but it feels right to continue.

So I guess this has been a bit of a checking in Blog. Thanks for reading it and wishing you a peaceful weekend.

               
                                                                                        Liz x


In the woods with Nessidog and Ella at Meathop.

 
 

                     Tarn Hows and sunset at Humphrey Head

Old fears

Earlier this week I had a look through the information I've been given about the 4th leg of treatment. At my last chemo-based appointment in January I was given literature about Zoledronic Acid.  I will receive this in drip form every six months over the next three years to strengthen my bones. Osteoporosis is an apparently inevitable side effect of the treatment I've been having and this medication should reduce the risk of fractures etc. Reading through the pack of stuff I noticed the notes the oncologist had made at the time- 'Dentist check' is there in large print. I realised I'd not acted on this despite being aware that this treatment cannot begin without a dental check up. With my next Burnley appointment being just two days later this set me off pondering.

So in the last 7 months I've had two operations, been yomping around Lancashire having chemotherapy and radiotherapy with needles and cannulas galore, but I haven't managed to make a dentist appointment a few minutes from home! And being honest this week, I've had to admit to myself that I didn't just forget, I'm scared of going to the dentist! It was time to have a look at this as 58 year old Liz really can't see anything to be afraid of so this really must be old stuff.

My first dentist was a gentleman called Mr Clegg. His claim to fame was that he was the official dentist for the St.Helens Rugby League team. The signs were there really as most of the players didn't have a tooth in their head! I remember going for my first check-up. I don't remember any explanation but I do remember a needle and refusing to open my mouth. The next time I went, I was told I needed a tooth out. I was also told that this was my own fault for refusing to open my mouth for a filling the time before. The extraction felt brutal. In my memory I was held down while the gas mask was forced over my nose and mouth then rubber bits were pulled around my face to hold the mask in place. I can still feel that cold rubber and hear the sound of my breath inside the mask. I remember dreaming and the dream was about the day I was told I needed a tooth out. I woke up to the words "It's all over" from the dental nurse and felt such relief that the dream and the extraction were done with.

My next dentist was called Miss Taylor and to reach her surgery we had to get a bus to the other side of St.Helens. As I think back to those appointments, I'm struck by how horrible they must have been for my poor Mum. The one that stands out the most in my mind was when I got so upset that Miss Taylor threatened to slap my face if I didn't calm down. Mum explained afterwards that that's what you have to do when someone becomes hysterical. Personally I thought the woman was a monster and I dreaded those 6 month check-ups. Mum employed a variety of techniques to deal with my growing dental phobia. She'd tell me we were going to the Pilkington Glass Museum which I loved. Then at the last minute, once we were on the bus, she'd tell me we were just calling at the dentists on the way. And I remember that bus- with the words 'Dunriding Lane' on the front. It sent chills through my body whenever I saw it. And that was a bit grim as it drove past our house every hour. I used to avoid looking out of the window around the time the bus was due so I didn't have to set eyes on it. One of Mum's strategies was to give me some pink medicine she got from my auntie (who worked in the chemists) to calm me down. (I think she got me to take it by telling me it was vitamins). Then one morning she told me I had a dentist appointment later that day but that I needn't worry because the pink medicine would keep me calm. I cant say I noticed. I don't remember at what point my Mum gave up on the 6-monthly dental ordeal but I have no recollection of being dragged off to see Miss Taylor from my early teens.

I hated my teeth if the truth be known. The ones at the front were too big and I was called names. I guess the gift in that was that 'Goofy' and 'Bugs Bunny' stood me in good stead for other name calling I was to experience later- I was called 'lesbian' long before I knew what one was! And at some point, I must have subconsciously made the decision to let my teeth go bad so I could have them all out and get false ones. I'd heard tales of people getting false teeth as a wedding present and it was my own experience to walk into the bathroom in an evening and see both my parents smiling at me from their respective tooth mugs. I was a bit of a bugger as a kid and seem to recall swapping those false teeth about a fair bit between the containers.

I was 17 when I next went to the dentist and I went alone and under my own steam. I didn't even tell my parents I'd found a new dentist and booked myself in. And this dentist was lovely. At the first appointment I told him I wanted to have all my teeth out. Looking back, he was so patient and gentle and I was able to explain how I felt about my teeth. I hated them and wanted false ones for when I left home and went to university. The dentist offered me an alternative- crowns! Up to this point I didn't know such things existed and was over the moon at this option. So I had the necessary procedures including removal of nerves, impressions, numerous fillings and posts inserting into the roots of my front teeth- after those teeth had been drilled off down to gum level. I went alone to all these appointments and only told my parents what I was up to after the temporary crowns had been fitted. I suspect Mum felt a mix of pride and relief that she'd had to play no part in the process!

My subsequent dental encounters have been rather stop-start and I only signed up with my current dentist when a huge filling fell out leaving me with painful tooth ache. He's a gentle and kind chap who explains everything. I signed up for Denplan- my way of  reminding myself it really was sensible to have regular check-ups and treatments. This was not unlike my attempts at fitness when I first signed up for a gym. Membership and attendance were two very different things then too and once I'd bought a new tracky I never set foot in the place again. I wore the shell suit for school though, on account of  my two PE lessons a week and lunchtime clubs- waste not want not and all that!

So having reviewed my mental dental track record, what did I conclude? For sure 58 year old Liz can see no real reason to be afraid of my lovely dentist. However, 8 year old Liz is still in there kicking and screaming. I was undecided whether to slap her face or give her a cuddle but accepted that it was definitely time to book an appointment. If teenage Liz knew that sometimes there's a higher good (crowns) to outweigh the fear, clocking on towards old age Liz knew that my old bones need the support of the drug available and the least I could do was go and see the fecking dentist to make this possible!

By now it was the day before my Herceptin appointment in Burnley so I phoned the dentist to make an appointment- at least I could tell them at the hospital that I'd got this appointment. I'd already started to rehearse the 'oh the dentist is so busy its taken me ages to get booked in' excuses and was just a bit gobsmacked when the cheery receptionist informed me they'd had a cancellation and I could go at 8.20am the following morning. Slipping into woowoo thinking, I marvelled once again at the way the Universe clears a way forward for us when we put the effort in and do the necessary self-work to prepare to move forward.

So Friday was a long but productive day. As I set off from home there was a flock of starlings sitting in the big tree by the house. Not unlike a scene from the Hitchcock movie they were rather unnerving. So I decided to imagine they were seagulls and walked up to the car singing 'If I had a photograph of you, something to remind me...'

At 8.15am I walked into the dentists waiting room. I'd taken all my meds and treatment details to update their records. There's a checklist I normally scan read and respond to by saying 'Naa, I'm really well thanks'. Admin sorted, I climbed the stairs to the cheery surgical space- bright colours, prints of trees and flowers. Its a lovely space and, internally running the words to 'Trees grow tall in the heart of the forest' I climbed into the chair. Check-up completed and only needing one little filling under a molar crown, I was asked whether I'd like my teeth cleaning and polishing then or at the follow-up filling appointment. The honest answer would have been 'No, I'd rather not have that done ever again!' I hate that bit! The things about old fears, however irrational, is accepting they are there and managing them in the best way possible. So I asked him to do it there and then so I didn't need to think about it (and blow it up out of all proportion in the run up to filling day). Easy peasy it was and I was home for 9am!

After this early morning old-fear slaying excursion I had the welcome respite of time with a lovely friend. A reminder that however solitary a journey may feel and however personal a lesson may be, its the folks who make the time to walk with us that really make a difference.

The afternoon saw me back in Burnley and it really was lovely to see people on the Edith Watson Unit. How do those folks who see so many people each day remember our names? Herceptin injection done and blood test taken in preparation for the new meds, I set off home- to bed. We've got an adventure as we start to celebrate Spring Equinox this weekend so I gave myself a good long rest to prepare. This year more than ever before I want to welcome in the Spring and all it brings with it.

Liz x

 

Ding Dong!

Radiotherapy has been an interesting leg of the journey. There is a temptation to compare it to chemo but, truth is, that really doesn't make sense. They are two very different treatments and two very different experiences.

The first thing I noticed was tiredness, but a rather pleasant tiredness. Not a sleeping off side-effects tiredness, but a genuine sleepy tired. It was only around treatment ten that I started to feel burnt. Up to then, Aloe Vera gel did the trick- supported by Theragem with calming Emerald crystals. But for the last week it has felt as though I've fallen asleep in the sun with just my left tit sticking out. Which in itself conjures up quite an interesting image!

Once the skin irritation began, it escalated quickly leaving my left breast (nipple still blue from surgery days) looking like mouldy spam. As has been the case throughout treatment, medication was provided- this time in the form of steroid cream and a soothing gel. Within 24-hours the symptoms became bearable, though I'm told it will be another 2-3 weeks before these side-effects ease off completely.

The last week of radio treatment brought a mix of emotions. The kindness of staff has shone through and there have also been moments of real humour. My three-armed gown was definitely a source of amusement and staff were patient towards my 'look what radiotherapy does to you- an extra arm!' joke.  At one early morning treatment towards the end, the room was freezing and you could have hoopla-ed  donuts onto my nipples. The young technician charged with setting me up for treatment was clearly cold. And when she touched me to move my body her hands were like ice. She apologised profusely and commented that her hands are often cold and may-be she is in the wrong job. We had an interesting chat about what job might suit cold hands and agreed undertaking might be a career option. I have to say, the kindness and compassion this young woman has shown throughout my treatment tells me she is most definitely in the right job!

That process of setting up for treatment is quite intimate. I just had to lie on the machine and do nothing. And I mean really do nothing- be totally floppy and allow my body to be manoeuvred into exactly the right position. It felt weird to have someone drawing on me and I was in awe of the precision. All I could do to assist the process was breathe in deeply. On occasions it was necessary for the technician to almost pick me up to move me to the correct position. There was something quite moving (emotionally as well as physically) about being held and someone else taking complete control. I imagine this must be how we felt as babies. And it was a good feeling to know that, even if just for a short while, someone else was in complete control and there was nothing at all I had to do except breathe. 

Some of the waiting room conversations were interesting and rather informative. I have learnt rather a lot about male plumbing over the last three weeks. I had no idea just how tricky the prostate could be and the wider genital region is nothing short of a minefield for potential dysfunction. Had Radiotherapy been around in Freud's day, he could have knocked penis-envy on the head once and for all by prescribing a quick trip to the Rosemere!

Yes there was humour and the inevitable insight and I found myself so in awe of the folks around me. Especially those whose treatment was lasting so much longer than mine. I know what 15 zappings have done to my chest and its not pretty. Those having 2 or 3 times that amount of treatment must really feel it. Especially in those more sensitive areas.

As I've said before, perhaps the most noticeable aspect of this leg of the journey has been how emotional I've felt. Its not been a crying at Bambi kind of emotion but more a case of feeling things more deeply. And somehow the things I've felt more deeply have been the positive, kind and lovely things. Its as though my bullshit detector has become so finely tuned that it filters out negatives before they become emotions. Stuff that would have previously hurt me now gets nowhere near- even my Achilles vulnerability of feeling hurt when someone claims to care then chooses not to make time for me. That hurt has melted away into an accepting sympathy for the one whose loss it is not to share what I could give. At the other end of the spectrum, I'm seeing goodness and kindness in marvellous, shining technicolour. Its a rather wonderful place to be if I'm honest and I really get it that the way to shift feelings from fear based pain to love based peace is through gratitude, kindness and humour.   

And the one thing that has intensified all this emotion has been the sound of that end of treatment bell! Those of you who have read my blogs for a while may remember it just didn't feel right for me to ring the bell at Burnley after my last chemotherapy treatment. Though the Paclitaxel infusions were over, I've still got another 13 Herceptin treatments to go- one every three weeks up to the end of November. In fact, I was back at the Primrose Unit for Herceptin a week after the last Paclitaxel. So ringing the bell would definitely have been premature. Being at the Rosemere where the sheer volume of people coming for treatment means the bell rings rather often, made me realise just how symbolic that sound has become. And yes, each time I hear it I feel all those emotions.

I stayed on after my penultimate treatment to see the specialist at the review clinic. I chose the small, comfy waiting area nearest reception that is right by the bell. I do love people watching and was really enjoying the silent company of two elderly nuns, one accompanying the other for treatment. Their joy at reading the waiting room magazines was clear. I'm not sure if they get 'Take a Break', 'Chat' or 'Now' at the convent but these were difinitely preferred to 'Knitting' and 'The People's Friend'. Good on them I say! Anyway, as we sat there, the bell rang and I looked over to see an elderly chap. As the waiting room dissolved into clapping and a few cheers, this dignified gentleman turned, saluted, said 'Thank-you' and marched away, shoulders back, chest out and head held high. The only dry eye in the waiting room was the clearly a bit deaf elder of the two nuns. Her friend asked her 'didn't you hear the bell?'  'Oh yes, bells, I thought I heard bells.' The younger nun went on to explain that the sound signalled the end of someone's treatment. The old lady's face lit up with a beaming smile as she clapped her hands together with such feeling and said  'Oh how lovely!'. I think my eyes were still a tad moist when I went in to see the specialist. Fortunately I soon had the distraction of hoiking my breast up so he and the young student doctor could see the abrasions underneath. And with a quick, 'have a closer look love, Ooo there's an offer you don't get every day' my smile was back!

And those students- wow! I've met some really pleasant young student doctors and radiographers over the last three weeks. In training at the Rosemere they are learning from the best when it comes to competence, care and kindness. Text books facts are the tip of the learning iceberg. What these future medics are seeing modelled each day will stand them in good stead. We hear such negative stuff about the NHS but future problems certainly won't be to do with face to face care if these folks are anything to go by.

So, all in all, if Radiotherapy were a dance I think it would be the Can-Can- fast and hot with some unavoidable chafing!

In the grand scheme of things that's the third leg of my journey completed- leg 1- Surgery, leg 2- Paclitaxel chemo, leg 3- Radiotherapy. The 4th leg of the journey is rather bitty and stretches out into the future and whilst it isn't daily or even weekly treatments, its on-going. But all is well! In terms of self-care I'm aware of the need to rest and recover. The temptation is to go back to being full-on busy. To some extent, the treatment journey has put a buffer in between me and busyness and it just hasn't been possible to rush around or say 'yes' to everything I'm asked to do or even the things I think I should do. I remember Steve Redgrave asking people to stop him going back to rowing. I believe his words were 'shoot me if you see me go near a boat'. The silly sod did, indeed go back and achieved further glory. But he jeopardised his health and probably relationships in the process. Now I'm not comparing my life to Gold Medal winning performance, but the busyness and activity resonate. I'm not going to ask anyone to shoot me if  I get my unrealistic head on now and again. But may-be I do need reminding from time to time that I've had two operations, 12 cycles of chemotherapy, 15 lots of Radiotherapy and there's still other stuff on-going.
So, if you're someone who sees me regularly or from time to time, and if I'm being a busy nob head when you do see me, a gentle reminder to rest before I need to rest would be appreciated!

Many thanks for reading this blog and for your support, understanding and encouragement. Yes I rang the bell yesterday. People clapped, I laughed and cried at the same time. Then we went for a curry. Onwards and upwards- for that really is the way I'm heading!

   

Liz x

 

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

 
 

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