When people don’t understand the impact of pain-it hurts.

 

                                                                   The Mood Moose 

Who knew how good a pain killer Naproxen is? Take note but protect your stomach! I’ve been on it since the start of the spinal growth caused me pain. It helped. So much so it was a while, until I started to lose power and mobility I realised I might need more help. Since then my cocktail of drugs has changed and varied but naproxen maintained. When I was told to stop it as I started chemotherapy ( I didn’t know till the day before) I thought ok some tweaks of other things and I might me ok?

I talked to a GP, we made a plan. The steroid holiday got me through the first day and a bit, by Sunday I was whimpering in pain by the evening, during the night and first thing in the morning. Monday morning came I contacted the GP. We topped up pregabalin and I asked re topical gels. Ask oncology- they told me to ask GP-. I asked the pharmacist-they told me to ask oncology. Wednesday I asked oncology, explaining my pain levels even when further increasing pregabalin and oromorph for breakthrough they double checked and yes topical NSAIDs are fine. 

At 9 next morning-Thursday by then-saw a nurse practitioner explained the above, got bloods taken for next days chemo and I said I’m considering I will need to stop chemo as I’m losing my little mobility I have left and fear it won’t return which would have a huge affect my health. I left with a promise to speak to the duty doctor and call me back. He did as promised and arrange a topical gel prescription through GP with the words we want you to be able to continue chemotherapy. 

Another day passed until the prescription was sent to the pharmacy. It was for 5% ibuprofen gel. I could have bought 10% over the counter for around £5 two days earlier but I thought GP could prescribe higher levels. I was incandescent! The nurse that morning who delivered my chemotherapy in the obligatory black bag (eek), said you must get on top of this pain level. She saw and heard me. The GP didn’t see me, didn’t understand and I have to assume doesn’t know about pain control. Believe me I couldn’t have done more to self manage last week. I had tens machines and heat pads daily, a relaxation session at Maggies and a Mindfulness class on line too. Frequent naps and lying down with a book during the day added in. Whilst also managing the nausea and many symptoms ( I will spare you those) of chemotherapy. 

I’m not looking for sympathy, I just want people to understand that when someone who lives with chronic pain is asking for help please don’t patronise them whether that is with platitudes or homeopathic levels of pain relief. 

The irony of this experience is I’m currently working with Versus Arthritis on the Pain, People and Place programme in Scotland. In one of my reports I quote from someone who was feeling rather desperate for someone to listen and respond to his needs. So he spoke for me too when he told me that, when someone believes me it makes all the difference. Is that really too much to ask for? 

Right I’m off to lie down now as I’ve finished my midget gems, an important part of my self care you understand. My family have done so many thoughtful things this last few weeks and months. One being a mood moose with home made banners attached. One says hug me, another wine o’clock ( more like boak o’clock currently) and the third is fuck off. Guess where I am currently? 

I love spring….

 I love spring. 

The hopefulness, the renewal of life, the colours, the surge of energy that even we humans can feel, leads to a sense of optimism. To be honest I’m in need of optimism when it seems my spring and summer is likely to be consumed by further treatment for breast cancer, while adjusting to new drugs for rheumatoid arthritis. A powerful cocktail but not the kind you would order for fun. There’s no jaunty umbrella, frozen fruit or champagne in this one. I’m trying to arrange things to look forward to but it’s hard to know what might be possible and when. 

So to cheer myself up I ordered a copy of the book Preventable by Devi Shridhar. I know how to have a good time! It is fascinating and well written  and captures the reader and in my defence I’ve long had an interest in public health. What is so interesting is how much a recent event like this has changed our lives and relationships too. It seems like another time we sat in lockdown, uncertain and fearful and yet even with falling numbers, the virus remains very present. Yes it’s more treatable but the daily death toll still speaks to its dangers. And yet we feel alien now when wearing masks in public. Lone rangers in masks against a tide of denial. How easily we can be blinded to the risks. But I do get that life has to be more than hiding from a virus. I really do understand that. 

Against that backdrop I’ve agreed to more treatment to try to prevent the cancer from returning. The oncologist is very sensitive to my situation and how much my health is diminished and so the treatment is geared to this and I know we all wonder how much I can manage to be honest. But I think I need to try at least as the BRCA2 mutation is proving to be a powerful foe. At times I think I’m deranged to even think about it. At times I think I’m deranged not to consider it. It’s exhausting. 

What has sustained me is time with my family; Easter fun, a wee holiday in Crieff and time with both my children and their families for respite and to keep safe while a very welcome wet room is fitted. Friends too have listened and cared while also discussing the huge issues, especially Ukraine, we see and read about daily in the news. I’ve finally accepted we can’t provide a home to a family at this time but I will do what I can in other ways. The small town of Aberfeldy ( now home to some of the family of course) is showing the UK how to do it. With big hearts they have opened their doors. My Grandson ( aged 3) knows the Ukrainian flag that flies from many local buildings and his Mum and Dad have given his kilt ( as well as other maybe more practical items) to a family newly arrived with a toddler. The sight of him speaking Ukrainian and strutting his stuff in a kilt is food for the soul. And don’t we all need that just now. There lots of soul food out there, I know. My plan is to have as much as I can when I can and for now that’s enough. 

And finally for something that’s worth a whole blog on its own, this month is Ehlers Danlos Syndrome Awareness month. People with EDS have a defect in their connective tissues. It grieves me beyond words that our Granddaughter was diagnosed with this is recent years. It’s such a devastating syndrome and frequently under diagnosed. It’s important therefore that there is more awareness so people can get the support they really need. So I share this for our Phia with so much love , I so wish I could take it away from her.  

Fifty shades of yellow….

 

Surgery number two is done. The wound is 50 shades of yellow - pause to take arnica-and healing normally in-spite of its raw red reminder of what’s passed. But with surgery for breast cancer I find, it’s the recovery from the anaesthetic that challenges me. And this time it’s two anaesthetics in just six weeks and don’t I know it. I’m on day 8 of a headache, treatment for a sinus infection, nose bleeds and wabbit on a grand scale. 

A fabulous Mother’s Day lunch in the garden was great fun and the family really made me ( and their Dad) feel loved. The sun and signs of spring have helped us lift our heads too. I recommend recuperating in the Spring, new life can be so uplifting and hopeful. Spring’s optimism convinced me I could go to a short concert with a theme of peace at St Giles. It was beautiful, especially the song for Ukraine and a bit too much in triggering pain and fatigue. Ah well, I’m still learning. 

And I’m now rationing news as the war continues in Ukraine witnessing the human fallout is so distressing. Sadly I’ve yet to see any Ukrainians come to Scotland but Ireland where visas have been waved ( as across the rest of the EU) they already have been able to offer homes and support to a growing number of people. Our friends who have done this have spoken of the emotional demand on them too as they experience a kind of secondary trauma. 

I was quick to register interest but as my health struggles remain so focal I need to be realistic in my offer. I know denial is one of my overused coping strategies! I still find my self concept hasn’t caught up with my reality. Illness can make me introspective and self care is by necessity all about me and I miss being able to do things for others. 

I guess my blog is in part a contribution I can make. I write this to let friends and family know how I am, to help me process what I’m experiencing and also help share the reality of my  life with cancer ( as well as disability of course) and it’s impact. Breast cancer in particular is now a common condition. We all know several people who have survived the diagnosis. We can be fooled by the “pink washing” of breast cancer into thinking it’s sorted. And so much really has improved. Even being diagnosed with secondary breast cancer does not mean the end, treatments that manage the condition can mean many years to experience birthdays, weddings, new births and all the ups and downs life offers. But counting the years and months isn’t the same as understanding the day to day life experience for people. Everyone will be different but it will be rare to be free from physical or emotional sequelae of treatments past or often ongoing. Everyone’s story is unique and needs to be acknowledged not hidden or diminished.  

April 18 is the next step in my own crazy cancer experience. I’m attending the clinic to hear about whether I need any additional treatment. It transpires it’s Easter Monday…..so that is optimistic, isn’t it? 

Wabbit and crabbit…

 

Recently our grandson had to come home from nursery early. He’d had vaccinations and h temperature was up. He announced as he walked back in the door….”I’m ok, I’m just a wee bit wabbit.” My heart melted with this announcement. Partly because wabbit spoke to how I feel too -the perfect word. As well as delight at his use of the Scot’s word. It was the reminder too of how Scots permeates our day to day language and how uplifting ( and very cute) it was to hear him use it. We’re a land of many languages- reflecting the many influences on our island nation. He may even learn Gaelic in the future, it’s a language taught in his future school, something I could never even have contemplated for my children or for me as a child. 

In a time when we are seeing a sovereign nation ( Ukraine) being violently invaded by Russia, ripping out it’s very core , its made me grieve deeply for the people and it’s touched that Scots part of me that feels an affinity to a country that was finding its feet as a culture again and scared by how fragile that now seems. 

I wonder if it’s true for nations, as it is for people, that we can never truly love others until we love ourselves. The Scotland I grew up in was not one that loved itself or it’s heritage, frankly we didn’t know much about it. At school we learned nothing of our history, our literature, our music and were criticised and even punished for not speaking English. That’s hard to believe now as so much of our culture is re-emerging and the “Scottish Cringe” is becoming less evident. A friend brought my attention to a Proclaimers song called Scotland’s Story. https://youtu.be/hcZF42F_o00. It really moved me, as an island nation we are a wonderful mixture of not only the countries of the UK but from across Europe and beyond. The song lists the many folk who make up our land, including Ukraine. “We’re all Scotland story and we’re all just the same” such a powerful message to all who want to call this place home. 

As a family we have applied to house refugees ( I know…..are we crazy, we’ve so many challenges with our health but we need to help and we’ve a warm homes and big hearts). I welcome that the Scottish government have an arrangement as super sponsors working with the UK government scheme https://www.gov.uk/register-interest-homes-ukraine. “Our hearts were already open – now our doors are too,” Nicola Sturgeon said. https://www.gov.scot/news/scheme-opens-for-displaced-ukrainians/ This includes information for Ukrainians who want to come to Scotland for refuge and how they can now choose that option. I do hope so many are able to be helped. Not just the Scots but the British peoples hearts are much more open than the governments processes are I’m deeply sorry to say so we all must do what we can to have our voices heard and get visas waived for now. 

And in other news, I’ve more surgery to face next week. A biopsy has shown a  small but cancerous tumour in my breast. It showed on CT which was reported after my first operation. It’s another triple negative tumour but different to the earlier one. Prof Dixon has never known this before. I have no words! My brain keeps trying to make sense but fails. And with other health things in the mix I’m feeling overwhelmed and my body battered adjusting to the medication for, recently diagnosed, inflammatory arthritis- likely rheumatoid. So my outward appearance maybe reasonably calm but it’s a swan like performance. And there is a bit of me that feels like a Munch painting. 

You know the one! But the intramuscular steroid injection has helped a little with generalised pain and mobility which is so very welcome…I’m taking that as a win! 

And the sun is out this weekend and I plan to get out and about whilst isolating before my operation. Covid is everywhere here, how on earth can I avoid it and remain sane at least until my surgery on Thursday? 

Wish me luck….

Talking gratitude, storms and shhhh!

Do you know this saying? It says - “life isn’t about waiting for the storms to pass, it’s about learning to dance in the rain”. Now I admit to liking the odd quote that can tell a truth in verse or image that opens up a new way of thinking. And in this week, post op, the storms have been raging in this part of the world, both real and metaphorical. So it strikes me that not only have some of these actual storms come with a red warning, I’ve also been reminded that dancing is not my strength either. I’m glad no one reminded me of this quote or my reply might have been brief and to the point ( you know, two words, second one….). 

Ten days post op and I’m healing and some pain receding. At times I’ve been able to marvel at the body’s ability to recover and at other times I’m reminded that our bodies are complex ecosystems and one wrong move and the repercussions are widespread. This weeks smorgasbord of symptoms has included severe nerve pain, bladder infection and the old favourite, constipation. 

Some days I think constipation is the worst thing to cope with. I’ve been toying with the idea of setting up a podcast called “Talking shite”.

In Scotland ( and Ireland too I believe)  it’s a riposte to people we think are talking nonsense, occasionally fond but mostly not! And the word shite is an adjective as well as a verb. Now I don’t suggest you try this out in polite society ( !?) or say-at a job interview but in the right context it can be liberating if rude! And some light hearted banter and information about constipation is so needed. It’s the thing no one wants to talk about and yet can make you quite ill, for some it causes acute illness and should never be ignored. So if you live with chronic pain and need to counteract the effects of opioids on the bowel join me in being open about talking shite and don’t be afraid to ask for help! You aren’t alone…

Meanwhile in other storm news, I’ve to have another scan and likely biopsy on something the CT showed. I’m unsure of details but will find out more this week ahead. I’m taking a step at a time and should get all results early March. And the weather based storms have made it pretty hard to dance or even stand up straight so instead I’m reading, doing a little writing and contemplating trying cross stitch. I suspect the afore mentioned adjective may be employed during that process of learning and experiment but I will try to retain my beginners mind of curiosity, not judgement.

In many ways it’s gratitude I feel this week, in spite of the storms, for the kindness and love of family and friends and the many ways they have reached out. It’s hard to express how much it helps, it really does. 

I feel less alone in this storm and that’s getting me and Andrew through. 

With love and thanks to you all. 

Audrey

The Kingdom of the Sick

 The Kingdom of the Sick

Well it’s official, I have another cancer in my left ( reconstructed breast). I’m still taking exemestane and having regular zometa infusions to help prevent  the return of the cancer but nonetheless I’m back to hospital on Thursday 10 February for a wide local excision. So I left the breast clinic with a pen drawing on my boob of the planned excision and trying to puzzle that this time the tumour is triple negative this time. This means none of the hormone based treatments or herceptin work to treat or prevent the triple negative tumours. It’s complex to understand but for more information see 

https://breastcancernow.org/information-support/facing-breast-cancer/diagnosed-breast-cancer/primary-breast-cancer/triple-negative-breast-cancer

My bone scan was clear which was good news and I get the CT for an all over check up, on Wednesday. It’s the day before the operation but at least there will be some preliminary results. So this week is busy. 

As I was planning how to approach the CT I was interested to see mention of getting to the hospital ( for 8.45- a challenge as a wheelchair user who lives with chronic pain). The MACS committee I’m part of has been actively trying to improve information and options for disabled people getting to hospital. I read on, please drink 1.5 litres of water mixed with an attached drink 60-90 minutes before. OK, set alarm it’s going to be an early one. And just over the page it says the parking is reduced please do take public transport. 

I picture someone, a litre and a half in the tank, chugging slowly across the city on the number 19 bus at the rush hour. I cross my legs tightly and thank goodness I’m close to the hospital. Can you imagine?! It’s not a joined up approach is it and yet all these instructions are in the one letter! This is why travel to healthcare settings is important and yet so often ignored. For many that would be a missed appointment, the final stressor that tips them over the edge between coping and not.

I have been asked constantly in the last few weeks -“how are you?”. I don’t know would be the honest answer. I don’t cry like Cara the lurcher. She had a tooth removed yesterday and she whimpered for several hours and howled like a trapped beast when our daughter asked her how she was. She likes you to get the full force of her pain, grief and disgust at her treatment. In fact we shared so much compassion last night that we all shared the bed too, two adults, a big cat and an upset three legged dog. ( don’t judge!) I think we managed some sleep! It’s rare the cat has been ill or hurt I’m relieved to say, but when he is upset, he goes under the bed, right at the back and stays there till he needs something or feels better. I’m more in tune with the cat. I don’t cry much but  I do tip into sleep and not always when it’s convenient! 

I had a really lovely birthday last week which made me tearful for good reasons. I am literally festooned with flowers. A small selection shown here! And as if that wasn’t enough we went to the Botanic gardens in the afternoon, setting out in winter sun to see the snowdrops. They were glorious and reminder that spring flowers will soon follow. But caught in a snow and hail squall suddenly was the additional reminder that winter was still in charge. 

Davie, our grandson, free of perceptions of seasons, found joy in capturing snow on his tongue. Seeing the world with the beginners or child’s mind is how best to find happiness.

I’m isolating now, pre-op but I do find myself wanting to be in contact with others who are ill. Those who get the negotiations with the future, the anticipatory loss and grief, the uncertainty and feeling unable to plan a trip or a holiday until the treatment plan is clearer. With those others who try to keep their pain from those they love and who want to savour every chance to hug them and hold them close and foolishly try to hold in the tears. There is a comfort and desperation almost in those hugs, can you store up a lifetime of them and wonder if telling them again and again that you love them isn’t almost counter productive. 

And yet in the kingdom of the sick, love is our currency. 

Tae a lump

 

Tae a lump….

I’m not sure when I noticed you. I do remember thinking I will wait until after Christmas to mention it. But you know that feeing when you have a hole in your tooth or even an ulcer on your tongue, you have to constantly revisit it. As you avoid calling the dentist your tongue tells you how foolish that is. Exploring every tender point at every time you are trying to avoid thinking of it, yet the tongue- the traitor-finds it everytime. Making a mockery of denial, so does my hand. In the shower I check it out, in bed I notice it’s contours, applying my favourite moisturiser I feel it clearly. I’m confused and yet at the same time my heart is sinking in recognition that this is serious. 

Of course it is, you cry. But you see I’ve already had breast cancer four times and I have had two mastectomies, one reconstruction and a whole lot of grief since 1994. To be fair most of my diagnoses have been in the last 10 years. Just when I thought I was safe from breast cancer, just when I had moved back to my favourite city, Edinburgh and a couple of years into working as Scottish director of a breast cancer charity which was at that time Breakthrough Breast Cancer ( since merged with two other breast cancer charities to become Breast Cancer Now). Honestly I’d got a bit smug. I was through it and could use my experience to set up the charity in Scotland and make a difference for others. Knickers on top of the tights ( super woman style) Audrey would do her utmost to improve things for people affected by breast cancer. I did the moonwalk, I spoke at events from village halls to parliaments, my passion was there for all to see, I had a super team ( take a bow, you know who you are) and we worked our socks off. I was due at the breast clinic as a new patient then go on to a national meeting of experts on breast cancer. I never made that meeting. The routine mammogram as a new patient showed that I had a recurrence in the breast I had treated in my thirties. I can do this I thought…..and I could but after reconstructive surgery fatigue eroded my well being. Every early fight to London, every late night home or spent in a soulless hotel stole my well-being a little at a time. And -long story short- I decided to leave the job I loved. I described all of this in this blog which you can read from the beginning. 

I had my right breast removed in 2019 after more cancer was found. It was then we realised I carried the BRCA2 gene. So in February 2020 I had my remaining ovary removed and that should mean I was at much lowered risk of recurrence. 2020 would be my year I decided but as we all know now, coronavirus had other plans. I’d developed a fuckit list, to be honest it isn’t a bucket list but more a list for someone who has had to seriously compromise but still wants to make the most of this reduced life. 

So back to January 2022 I told my husband about the lump and he encouraged me to tell the oncologist the next day rather than wait until my annual appointment at the breast clinic the following month. His reaction led to an early appointment with Prof Dixon and he told me he was sure it was another cancer. So today you find me waiting for scans ( bone scan one tomorrow) and biopsy  results ( on Monday). I remain hopeful it’s yet again a localised recurrence and surgery will be the mainstay of treatment. Indeed I’m wondering if I could seek an entry in the Guinness book of records. Not sure that would compensate but it’s something?? 

I know my family and friends have read this blog at times over the years and I will commit to writing more regularly and sharing this next stage. I hope it helps others understand a little more of what this experience is like for me and mine. I’m still in the phoney war stage of this journey. I haven’t started treatment and I’m still working hard to persuade myself that this new diagnosis won’t change things in the long run. But just today I realised something. In the north east of Scotland the word bosey is used to describe a hug into the breast. Now my grandson loves a bosey and today it struck me I really won’t have a bosey to offer anymore- and for the first time this new diagnosis felt real. And my soul is aching.