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