Restoring A Classic

I ran 100km (60 miles) in March. Training has been challenging. There were tears when I first put the training shoes on back in November. For the first few sessions I couldn’t run 3 km without having to stop and walk several times. I would get home exhausted and deflated. My hips and elbows would be sore and I was tired. Why bother? You may well ask. I suppose it’s a combination of things. It’s to prove to myself that I still have it in me, that I still have the drive to achieve. That I can be stubborn, determined and driven, when faced with a goal. A sense of satisfaction. A desire to feel energised, able, fit and to rise above the effects of Tamoxifen and surgery and scar tissue and to live a best life.

Running and in particular races, have always filled me with an immense sense of fulfilment. It’s a long and often arduous process from deciding to train, pushing on for weeks and months before the glory of the final race day.

This time, I know it is the journey and not the destination that is significant and of substance. In my 20 years of running on and off, completing five half marathons and various 5km and 10km with effort but relative ease, this time, it’s proving to be tough, demanding, strenuous and at times fatiguing. Training is allowing me to take a far reaching look deep inside my mind and body. I am at all times mindful of the aging process, (it’s five years since my last half marathon) I endure the effects of the cancer drug Tamoxifen that I have taken for 4 ½ years, (mouth ulcers, joint pain, memory loss, fatigue in varying amounts), I’m still conscious of the scar tissue that runs from my mid chest to under my left arm which still causes acute stabbing from time to time, the skin to the back of my armpit remains numb. I consider all these obstacles in order that I can overcome the hurdles. I listen to my body and rest to repair and reduce inflammation, even if that means missing training for three days, I use my mind to push on and motivate myself, I fuel my body with a diet packed with nutrients and protein to rebuild muscle and elevate my immune system, carbohydrates to maintain energy levels, plenty of water throughout the day to stay hydrated and avert fatigue. Training this time, is teaching me to get more out of myself, to judge my recovery and to make allowances.

If you were given a brand new vehicle, the chances are, you would maintain it well, service it regularly, keep the tyres inflated to the correct pressure, check the oil, ensure it passes it’s MOT when required, keep it road worthy, you may even wash and polish it from time to time or treat it to a full valet. The thing is, we all started off with a brand new vehicle. Pristine, no bangs or scrapes, generally speaking a vehicle that was in great working order that required little attention other than putting in fuel. As the years pass it’s inevitable that our vehicle becomes worse for wear, slows down, doesn’t perform so well, breaks down, encounters the occasional accident, begins to show the scars, rust spots creeping in here there and everywhere, we begin to neglect this aging chariot, no longer serviced, hoping each year that it scrapes through the MOT and that it can hang on a bit longer, no more incentive to fill it with the best oil, or to fit the best tyres. But stop. What about those fabulous classic cars? “An older type of car, one that is no longer produced, one that people like to own because it has special features and looks stylish.” We are all capable of a stylish, on the road, well performing vintage. Yes, of course it takes effort, it may be costly, sacrifices to be made. It takes time, day, months, but the benefits are huge.

And so I set about rediscovering this vehicle of mine. My body. Aged, weathered, scarred, rusty. Hours, days, weeks of training, fine body tuning. Looking to see which parts were running smoothly, which parts needed attention? Muscles and bones to strengthen and tone, a healthy heart to maintain, feet to attend to with a reflexology and pedicure, skin care (be generous every day with the sunscreen) good nutrition and attention to what goes in, easy for me in the summer months with a plentiful supply of organic allotment produce and a love of home cooking. And so, after much effort, this sluggish vehicle began to run faster, recover better, rest well, shine and feel invigorated.

My goal of two half marathons within three weeks was a big challenge but the journey to get to the start line in the first place, was tougher.

The challenge now is to keep in tip top condition while easing off the road miles. This vehicle will not miss a service or MOT. This Classic will be staying on the road, tyre pressure checked, air filter cleaned, oil changed. Ready for the next big road trip in this adventure called Life.

http://www.nhs.uk/livewell/Pages/Livewellhub.aspx

Run for your Life!

I have three New Year’s resolutions: to write more (anything - letters, blog, stories, poems etc), to run the Edinburgh half marathon again in May (marking almost five years post diagnosis and five years since I ran a personal best) and thirdly, to learn some Italian!

I have started all three, it remains to be seen how much I actually achieve as I move through the weeks and months ahead!

I was saddened (and probably disturbed?) by the recent Facebook postings of Red Hearts to somehow raise awareness for breast cancer? I would like the opportunity to sit down and chat to the person who thought up this incredulous idea! How is a silent heart going to make a difference to anyone? In order to raise any kind of awareness we need to talk about cancer, shout about it, understand it, take it seriously, but not let it overtake us. We do NOT need to fight it or battle with it. We live with it, alongside it and beyond it. I do not need to bang on about wars, about winners and losers, I’ve said it many times before. If all the Pink charities raise enough money to carry out research, find cures, stop tumours, discover targeted treatments, provide information and support, then I can live with pink (let’s not forget that blue exists too though, with around 350 men a year in the UK developing breast cancer.) But a silent red heart? Come on! Wake up to awareness!

I urge you to take the time to read, digest and act upon the NICE NHS guidelines on being breast aware and then tell all your friends to do the same. That, is raising awareness. Early detection saves lives, don’t ignore any changes. I hear people telling me they’d rather not know if there was anything wrong, they don’t check their breasts and they don’t attend mammogram screening, they just want to get on with their lives in ignorant bliss. If I’d ignored a change in breast tissue in 2012, I would not now be getting on with my life. I would be enduring gruelling, aggressive treatment or facing a poor prognosis.

Raise awareness by sharing and talking about the facts! http://www.nhs.uk/Livewell/Breastcancer/Pages/Breastcancersymptoms.aspx

My trainers had been retired from running for about 18 months. My last race was with Team Stedman in Edinburgh in May 2015, when we ran the Edinburgh relay marathon, raising in excess of £2000 for Sarcoma UK. Our efforts brought a little comfort and joy to our friend Ros, who was at that time not able to run for her life, but merely able somehow, to find the strength to get from day to night and night to day in an increasingly debilitating, painful and frightening world. I took great strength from watching her facing her final days in this world. In the hospice I held her hand and recounted tales of the antics we all got up to on my 50^th birthday, our first visit to a casino, warming and floating brandy goblets in the hot tub under the stars (with a group of middle aged women who didn’t previously know each other) and wild and windy walking on the Ythan Estuary getting close up to the smelly colony of seals! At her bedside we laughed and I spoon fed Ros ice cream, which she devoured.

And so, the trainers are back on my feet and I have strived to get a few kilometres behind me in the last few weeks. I am now up to a reasonably comfortable 7km jog. I have a personal trainer lined up for a couple of trial sessions and a pledge to join the Striders on a Thursday evening. With my previous “frozen shoulder” now surgically cured and never better, I’m on course for a cracking event in May if my body accepts the fitness regime and gains stamina and strength without mishap!

Some people who have recently visited me or who read my FB posts have commented: “You are so lucky!”. Am I? Lucky to have had cancer? Lucky to have lived through, what was at times, a difficult marriage, wondering if we had the strength to hang on, to keep on? Lucky to have tolerated the hard and at times very lonely life that living in our very own “escape to the country” in NE Scotland brought?  I could go on. We all face many challenges. Lucky? I think not. My life is largely one that I have set out to have. I have made choices, I have made changes, I have planned, organised, removed stressful situations and I now infuse my days and weeks with bucket list events, feel good moments and take time just to be.  I am running for my life, running into my life, as life will not run to me, nor, will it run to you. You have to make it, you have to want it, you have to go out and get it. This is not a dry run, a rehearsal or experiment. This is the original and real deal. Look after it well and above all else, embrace it.

Why Italian? Celebrating New Year in Venice was quite simply magical. Anytime in Venice is magical. I have always loved Italy since my very first trip at the age of two! I want to scratch below the surface of tourism and experience a deeper flavour of this country and its people. Being able to order “un aperitivo” is simply not good enough!

Make some changes, make some plans. Be the leading light in your own life.

For now, Ciao. J

New Years Eve in Venice.

Shoulder, Scans, Surgery & Survival! 4 years on.

There are some days when it’s mental torture. The pain gets so bad that a panic attack sets in and my very core is terrified that it might actually be secondary breast cancer.

Other days when it’s tolerable, I keep on taking the drugs and live with it, functioning as best I can, always a struggle to reach my arm through a sleeve, to dry my hair, to reach a cup or pan from the cupboard. On a bad day, I am on the sofa with a hot water bottle, placed on or under my arm and my Tens machine wired up to try to gain some relief from the constant stabbing in my upper and lower arm.

I first had pain in my shoulder and upper arm last May as I packed up boxes to move house.  It occurred and now and again and wasn’t too troublesome, I thought it was probably arthritis. I carried on without much thought to it, just monitoring it and seeing how things went. I was still running and had been training since January for the Edinburgh Marathon relay, I assumed that the exercise had probably aggravated things and it would settle down once the race and training was over.

The heat was powerful in Skiathos in August and some days my arm was so heavy and aching I didn’t know what to do with it. Plunging myself into the pool was helpful in cooling things down and settling the arm. Swimming was no problem, a little jippy but nothing too uncomfortable.

By September the pain was becoming troublesome, more often and was bothering me most days at some level. I was starting to take Ibuprofen more often.

I made a doctor’s appointment to get checked out “just in case”. I waited for three weeks to see the orthopaedic doctor at the GP surgery. He asked questions and examined my mobility which at this point was quite good. He was fully aware of my breast cancer treatment three years earlier. He referred me for physio therapy and hoped this would help.

I left the appointment feeling happy that at least something was being done to help. I started physio two weeks later. Gillian was very knowledgeable and kind. The usual treatments of a steroid injection or acupuncture were both out of the question due to the risk of lymphedema after mastectomy and sentinel lymph node extraction.  She showed me exercises to keep the arm and shoulder moving and made a note of my mobility. No diagnosis was made at this point and the idea of a scan was dismissed as unnecessary.

At home I set about strictly following the exercise plan every day as instructed and pushed on through the ever increasing pain and discomfort. This was now disrupting my sleep at night from time to time and general pain killers were hardly taking the edge off.

Gillian had failed to point out to me, that if the exercises hurt I should stop. At my next appointment, when I explained that things had got worse, she withdrew the exercises and treated me with ultrasound massage. My mobility by now, was much worse, barley able to lift my eft arm above shoulder height nor able to hold my hands on my head.

I made another appointment to see my GP, who this time, confirmed a diagnosis of frozen shoulder but in agreement with Gillian, would not offer a steroid injection due to previous breast cancer treatment and lymphedema risk. He explained that this condition was quite common after breast surgery and went on to describe the three stages of frozen shoulder (adhesive capsulitis) :

• Freezing. During this stage you’ll slowly develop pain that gets worse as your shoulder gets stiffer.
• Frozen. The pain may have settled during this stage but your shoulder will remain stiff and hard to move.
• Thawing. During this final recovery stage you’ll begin to get movement back in your shoulder.

The whole process of this self-limiting disabling condition can last from many months to several years.

My GP told me that he would arrange for me to have an x ray, that I should continue with physiotherapy and he would see me again in three months. I was devastated that there would be no relief from the condition and the only option was to live with it. Sleepless nights, days and night wracked with pain down my entire arm and hand that no pain killers seemed able to touch, my under arm suffering dull aching pain and sharp shooting pains in the region of my mastectomy scar tissue. At home I cried.

 Some days later the practice nurse told me that the x ray showed some small development of arthritis in the collar bone, clearly not the cause of the pain in the arm. I explained to her that I was not sleeping and could not get respite from the pain. She prescribed cocodomol, unfortunately this also had no effect. She also suggested that she made an appointment for me to see an orthopaedic arm and shoulder consultant, an appointment was available for two weeks time. At least now I had a date to focus on and new hope of perhaps getting some help.

During those two weeks I had ever increased difficulty in driving, (changing gear, especially reverse and third to second) dressing, undressing (especially coats, jumpers and tops), drying my hair, folding my arms and sometimes even lifting a fork to my mouth to eat. The whole thing was now beginning to drag me down and of course there was still in the back of mind, is this a frozen shoulder or is this a breast cancer metastases? I didn’t say that out loud, or at least have only declared my fears to my daughter and husband during a panic attack when the pain was almost unbearable. I did actually think about walking in to A &E on one occasion, although it was too far to walk and I was in too much pain to be able to drive myself! Had I have voiced my fears out loud, the inevitable response from everyone would be to tell me to “stay positive” “I’m sure it’s fine”.

Very hard to do.

For me, this feels like another side effect of breast cancer surgery and a life changing disease called cancer that changes our bodies and minds forever and can never ever be removed from our life. The daily dose of Tamoxifen and scars that can be painful are a constant reminder of this fragile world we all live in.  As I write, I have recently said goodbye to my friend Ros, whose life was taken by cancer at the age of 55. I spent time with her throughout her journey and sat at her bedside in the hospice just days before she died. A stark reminder that this disease will do as it likes, regardless of how positive or hopeful we are.

Yes I am hopeful that it is only frozen shoulder. For non cancer patients it is frozen shoulder. For me I have hope. Hope that it is just frozen shoulder and not a return of the cancer.

I was only kept waiting for ten minutes, there were free hot drinks from the machine and a copy of Lincolnshire Life to read. The chairs are always blue. Mr M was efficient and friendly in a matter of fact sort of way. He took a brief history and checked my mobility, in doing so he caused a rather loud cracking from the top of my shoulder that vibrated through my skin. Diagnosis most likely that of frozen shoulder (adhesive capsulitis), very likely to have been brought on from the mastectomy but an MRI scan would be a good idea to make sure that nothing else is going on.

Finally. Finally I would be able to put my fears aside. I never, ever, want to be one of the patients who report that they had been going to the GP for months on end complaining of pain and had been misdiagnosed without proper scans. You hear it all the time. I did not want that sort of outcome.

I’m still in the midst of the waiting game, waiting for the MRI, waiting for the results, then waiting to reach a decision as to whether to go ahead with key hole capsular release surgery. While I am told by the consultant that this is probably the best thing to reduce pain and increase mobility, the addition of new scar tissue in an area already heavily scarred and with damaged nerves could cause on going pain (particularly as I am prone to keloid scarring).

The promised two week MRI did not materialise and it was in fact four weeks. I was called from the main waiting room where the chairs were, as always, blue. In the MRI lounge I was pleased to see that the chairs were grey. I sat alone. I pondered whether to have a glass of water from the machine but decided that they would probably call me any minute now. I watched the wind moving branches on the trees through the window. Mark entered the room and smiled and sat next to me. Checked all the details; date of birth, address, left shoulder? We were good to go. Instructions - Undress, leave on pants, put on hospital gown, and fasten at the back. I selected the grey one from the pack of the usual blue and white. I couldn’t fasten at the back as my arm would not reach round to carry out this task. I sat on the chair in the changing room having put my belongings in the cabinet and locked the door. I was acutely aware that these images that were about to be taken would be the truth. It could go either way – fine or not fine.

I had forgotten quite how noisy it was in the MRI scanner even though I had head phones on which projected Classic FM into my ears. I imagined that I was on a cross channel ferry, the clunk and the clank of the car deck, the chains, the boat doors closing. Then a dual carriageway with road works, a pneumatic drill digging up the tarmac. Every few so often a voice said “a few more minutes Louise are you alright?” “Six more minutes Louise are you alright?”. Twenty minutes later I emerged from the machine and it was done.

I checked the post box daily after a week to see if there was any news. Eventually I had to chase up the follow up appointment. “Oh yes, let me book you in for that”. “And if I hadn’t phoned you?” “Oh I’m sorry, you should have been told to ring for an appointment”. The three and a half weeks wait for results was long. I thank the people who distracted me during the wait, although very few of you knew.. .

Last night I had dinner with a long time friend. I made no mention of scans or results and the evening was wonderfully normal. Tonight I opened a bottle of Cava and enjoyed seared red bream with lime and chilli, bought this morning from the town market. I played music, Christina Aguilera “Beautiful”, Brian Adams, Eagles and ELO. I allowed myself a minor break down, big tears from deep inside my heart, fuelled by fear and “what ifs” in the full knowledge that this time tomorrow I would now if everything was fine or not fine, acutely aware of the consequences of what a secondary cancer diagnosis could bring. Ultimately, I remain optimistic that all will be well and I comfort myself with the fact if the news is bad, I don’t actually need to physically feel any differently than I do today. It’s the mental health that is always the hard part, mind over matter. This is key to everything. Until tomorrow when I hope to bring you not good, but great news. . .

The news, was fantastic! No cancer, merely a frozen shoulder. (Immense relief, huge happy sigh, deep breaths, relax, fear escapes from body.) This condition may improve over time (rather a long time 2- 4 years!) or it might not. By now my mobility is limited in my left arm, although thankfully, the pain is now a lot less. I haven’t been able to drive for months and the odd time I have tried, it’s been changing gear that has proved difficult, with an acute lack of power to pull the gear stick back and across from 3^rd to 2^nd and incurring shooting pains down the length of my arm as I try!

So here I am, exactly four years post breast cancer diagnosis, about to go in for surgery to unfreeze my left shoulder. I realise I have been anxious and stressed about the whole thing for some time, just wanting to feel able and “normal” which seems to be quite a task for many of us who are post cancer. My thoughts naturally go back to the last time I had a general anaesthetic and the ongoing issues with the scar tissue across my chest and under arm from the mastectomy. The back of my underarm is still completely numb post mastectomy so at least the key whole surgery shouldn’t cause much pain!

Three years after diagnosis

Thursday 6th August 2015.

 

Three years ago today, I sat in the waiting room at Aberdeen Royal Infirmary, watching the Olympics on the TV screen (which was broken, all the colours green and yellow) Beth Tweddle had just won Bronze in the uneven bars. It was 1520hrs. Moments later I was told I had Invasive Lobular Breast Cancer. My body and my life changed.

 

It’s over six months since I last wrote an update. That doesn’t mean that nothing has been happening, to the contrary! Life continues having resumed “normality” as much as it ever does after a cancer diagnosis. Life on The Estuary was a joyful and restful time, with stunning views and stacks of wildlife on the doorstep. A true pleasure and escape from the busy lives we had before. Our daughters continued to do well at university with our eldest having recently graduated. It was a wonderful family celebration for the graduation weekend, topped off with an amazing seaplane trip from Loch Lomond with spectacular views over the highlands and islands, big tick on my bucket list, thanks to our girls for the fabulous Christmas gift!

 “Team Stedman” also completed the Edinburgh Marathon Relay at the end of May and raised a whopping £1700+ for Sarcoma UK to support our dear friends James and Ros as they deal with an incurable sarcoma diagnosis. We had put in hours and miles of training through the winter and spring pounding the streets in rain, sleet, snow and ice! A tremendous sense of achievement.

We’ve been packing and unpacking crates and boxes having moved both girls in recent weeks and then ourselves! Hectic times! As such the Breathless Breastless Project (http://www.breathlessbreastlessproject.org/) has gone on hold for the time being. The loft now houses several pieces of the exhibition, with the rest having gone back to the artists for safe keeping until such time as we find ourselves with another venue or request to exhibit. Social media pages are still fairly active with new “likes” over recent weeks, possibly as a result of the great publicity in Breast Cancer Cares team B-Aware magazine which is being handed out at various venues throughout Scotland and is going on tour on Betty the Pink Bus!

As the months roll by, it is with sadness that I hear news of someone whose cancer has returned and also of a friend newly diagnosed. I never take the news well as it throws you in to that momentary panic of “what ifs”. I have learnt three years post diagnosis that these fears only last a couple of days and then I shift back into the here and now, the present, and put the lid on the box. I continue to be inspired by the people I know who are living with cancer which fuels me to try to make the most of the friends and opportunities that I have and that I am able to create, filling more and more of life with quality time and activities of pleasure. Enjoying spending time “being” and “doing” instead of the stresses that life seemed to frequently throw at me from time to time in the past.

So here I am embarking on a new life in a new place closer to family and long standing friends and of course much warmer weather! For the first time in years the calendar exhibits a host of different events and invitations for the coming months. It is fair to say that I had never experienced loneliness until I moved to Aberdeen. Yes, we had beautiful homes and stunning views but there is only so much pleasure to be gained walking the dunes and absorbing the views (in the cold wind!) and that never quite filled the gap of regular company and sharing. There were of course good times and good people during my nine years in Aberdeen, but never any real sense of community or belonging.

 Health wise, I have for some months suffered at times, quite severe arm and neck pain. After six months and it gradually worsening I did pick up the courage to visit the doctor, not for that reason, but because I developed a nasty abscess on my bum which required two lots of antibiotics before it cleared up. Not ideal as this coincided with a holiday to Corfu, was touch and go whether I was sent to hospital to have it drained before I flew, but fortunately the first lot of antibiotics had made enough difference for that not to happen. Second lot of antibiotics (which are given to alcoholics to stop them drinking!), meant I could not touch a drop of alcohol while I was away, the drugs themselves left me feeling very nauseous several times. Bloods came back with an abnormal liver function but once the drugs had finished and the abscess cleared up this had reverted to normal. I took the opportunity to mention the arm and neck pain to the Doctor, who took it seriously and I was referred quite swiftly for x ray of the cervical spine which came back just a few weeks ago showing degeneration and arthritis of the 5/6 vertebrae. This had become especially troublesome at night times so I was prescribed Gapapentin which left me feeling drugged up and drowsy in the mornings. I stopped this after two days and reverted to paracetamol and Ibuprofen in order to function without the fuzziness, there is enough of that on the Tamoxifen!

Changing to a new medical practice and hospital in England filled me with hope that the system and care might be better than some of that which I experienced in Scotland. However, thus far, that does not seem to be the case!

Having been told at reception that I needed to see the GP in order to get Tamoxifen on repeat prescription he had no idea why I was sat in front of him or indeed that I was a new patient. He was unable to tell me if I qualified for free prescriptions (in Scotland no one pays) or if I did how to go about it. He referred me to the dispensary in the next village who referred me to NHS online who referred me back to my GP! It was a stressful afternoon! The end result was to go back to the GP practice to see the nurse who filled out the correct form which the Doctor had to sign! He was not at all interested in listening to my issues with the neck and arm pain and said I needed a separate appointed to discuss any “issues”. The new patient health check with the nurse proved to be a better, friendlier experience. Blood pressure normal, BMI normal, urine normal, cholesterol possibly an issue. She’s booked me in for more bloods and said I should see the doctor about the arm / neck pain. I am hopefully also now in the system to get my annual mammogram and check up in the coming weeks.

Meantime, I am celebrating being three years post diagnosis and escaping the unpacking of boxes by flying off to Skiathos with one of my beautiful daughters, her friend and one of my long standing friends. Mamma Mia!

December 2014

I have been overwhelmed by the success and response to the Breathless Breastless Project. Since June we have put on four exhibitions and attracted over 500+ visitors. Social media followers continue to rise slowly and feedback has been nothing but supportive for our quest to share the real journeys of a breast cancer diagnosis. Our last exhibition finished in September but I continue to follow up leads for potential events for 2015. I have been liaising with a local charity who expressed an interest in hosting our exhibition at one of the Scottish museums next spring. I am very excited about this opportunity. Find out about future events on the website www.breathlessbreastlessproject.org

I was disturbed by the news last night of NHS Grampians failings at Aberdeen Royal Infirmary and Woodend hospital. BBC said “Three reports into health care in the north-east of Scotland have highlighted "extremely serious" issues and "make stark reading" for NHS Grampian.” The main key points can be read here http://www.bbc.co.uk/news/uk-scotland-north-east-orkney-shetland-30293512

I did actually file a letter of complaint following my own care raising various points about the departments and people who dealt with my case. I was rather shocked at my annual check up to be greeted by one of the nurses I had complained about! I have also never seen my own consultant at my two annual check-ups and have been checked over by a junior doctor. The annual check-up consists of a few questions, raising my arms above my head and a feel of my breast as I lay on my back. My original tumour could never be felt when I lay on my back and could not be seen by raising my arm. Lobular breast cancer is notorious for not showing up on mammograms, I was told my mammogram “showed no change” and that I had dense breast tissue. Not the reassurance that one would like to receive!

Following changes in bowel habits and under rib pain at the start of the year I consulted my GP who made a referral to hospital. I saw the doctor within a couple of weeks and she made an “Urgent” referral for colonoscopy and endoscopy, finally someone interested to look at why I may also have been anaemic. I chased up the appointment twice, being told by my GP that there was an acute shortage of consultants and serious backlogs with patients waiting for surgery etc. He spoke about elderly patients being sent to Glasgow, three hours away, for hip replacements! The procedures were finally carried out over six months later. I am happy to say that nothing untoward was found apart from a hiatus hernia and was told that I should be referred back to the hospital doctor for follow up. Of course I have heard nothing and I doubt there will ever be a follow up. The doctor did say that they took bowel changes seriously and would monitor me. We all clearly need to be proactive in our own care but unfortunately I think this gets us labelled as anything from aggressive & argumentative to paranoid and a hypochondriac!

 I have been trying to get my fitness back up although my hip and shoulder are telling me they don’t like it! The estuary is a very inviting place for walks and runs especially on crisp, sunny, winter mornings. The views are spectacular and peaceful, you can really get back to nature out there on your own. Lungs full of fresh sea air, wind and sun on skin, legs sinking into soft sand, seals calling from the shoreline. Quite idyllic.

I have taken on a role as a Team B Aware volunteer for Breast Cancer Care Scotland. I am trained and available to go out into the community to give a short 15 mins presentation on breast awareness and how to be breast aware. Do you know what changes to look for in your breasts and how and when to check? Do you regularly check your breasts? Early detection is key to survival and we hope as a team to reach as many people as possible in Scotland, from all walks of life and over all age groups. You can find out more about Team B Aware and book a presentation here http://www.breastcancercare.org.uk/b-aware

Christmas is almost upon us and I look back over 2014 grateful for all that I have done and all that I have achieved. I have met some fantastic people through the Project, inspirational artists and like-minded cancer survivors who have enabled each other to express themselves in a way that has helped them to move forward and to let go of some of their fears regaining an optimistic future. The Project has given family and friends a deeper understanding of what a cancer diagnosis means and has shown the impact a diagnosis has on lives, both immediately and long term. Sharing and communication with one another is key to healing.

My thanks go to everyone who has supported The Breathless Breastless Project in 2014. To all the people who have given generously of their time and to those who chose to support us financially. We have exciting plans for 2015, if you know of a venue that would like to host the exhibition, if you would like to take part in any way or wish to sponsor us please do get in touch!

Meantime, very merry Christmas wishes and happiness & good health for the New Year.

 

Two Years Since Diagnosis

One For Sorrow. Lou Loakes

Around 100 people turned out for the opening night of Breathless Breastless Project. It was hard to believe that an idea in my head was now hanging on the walls of a council run creative hub in Aberdeen’s city centre. With a glass of bubbly in hand I chatted to the Lord Provost of the city, Lady Provost of the Shire and many other invited guests. The Press & Journal and Original FM wanted interviews. SHMU FM invited us to do a live broadcast on the culture show at the end of the week. I stepped out of my comfort zone on opening night and gave a speech to the audience as we all stood around Beate’s Living Tree Of Life, Hannah’s portrait on the wall behind us, a stark reminder of the power that this disease still has to take 1000 lives each month in the UK.

Feedback from the 350+ visitors who came to see the graphic images and learn of the journeys of breast cancer survivors was quite overwhelming. “Inspirational, powerful, beautiful, poignant, breath-taking creativity, magnificent, evoking, emotive….”

Stark reality. Jane Birrel MacKenzie

My life has changed considerably in the two years since I was diagnosed. Two years ago yesterday, I sat in a white consulting room on a blue plastic chair waiting. I remember it was sunny, I pushed my fingers through the vertical blinds to let in the sun, I watched the hands on the clock tick, I saw the box of tissues on the desk. Moments later came the news that would change my body and my life.

The hot needle stabs that occasionally pierce my chest are a reminder of the surgery and the loss of my breast. These are brought on by exercise such as swimming and the rowing machine. I have given up with the rowing but am keen to develop the swimming. On the anniversary yesterday I tried out the new Aquatics Centre in Aberdeen for the first time. Fabulous facilities and a wonderful 50m lane pool where I managed to swim 1km.

Tamoxifen side effects remain minimal and it’s hard to differentiate from what is “normal” as one gets into their 50’s! I sometimes feel as though I lose big chunks of memory, not just words or detail, but chunks of time unsure of what I did or with whom. Most mornings my eyes are very cloudy and it takes several minutes for them to clear fully. The heat has caused swollen legs and I am experiencing a low grade temperature for about half the month which the doctor says is the Tamoxifen. (He didn’t actually take my temperature or examine me in any way). Menstruation continues regularly, heavy on day one but then as “normal”. I’m getting around two to three “fatigue” days a month, the temperature doesn’t seem to help this. I just manage my time and try not to cram too much into my day or week, combining good diet and exercise, work, play and relaxation where possible.

Since the passing of two years, I have learnt who and what are important to me. I have learnt to be calmer, to expect less, to demand less, to live in the moment, to do the things that make me happy and to avoid or minimise the things that cause me stress. There is no time like the present and there is no present like time. Time is the greatest gift any of us will ever have.

Some relationships have deepened and drawn closer, some have diminished and no longer hold much value. They were what they were for a period of time only. The ones that remain are to be cherished and enjoyed and time shared filled with moments of living, giving and enjoying. My experience has enabled me to help others in similar situations, able to offer a friend some comfort following her own mastectomy and reconstruction and support to my cousin during her diagnosis and subsequent lumpectomy. And then there are new friends. New people brought into my life along the way. My Project artists, the team. People who have uplifted, inspired and believed in me. People who made my dreams possible.

We are very excited to be taking the exhibition down to Bradford to exhibit during the Saltaire Festival in September as well as a second Aberdeen exhibition at The Arts Centre & Theatre. We have been invited to take a mini exhibition and presentation to one of the local businesses in Dyce next week. I am also to take part in a training program as a Team B Aware Ambassador for Breast Cancer Care in September. The new scheme aims to target disadvantaged groups and raise awareness in being “Breast Aware” and to dispel the myths and fear surrounding breast cancer. Scotland has one of the highest mortality rates in Europe for breast cancer and this they say is down to late diagnosis. My role will to be to talk to groups and give the facts.

Life is altogether a slower more relaxed pace, less physically demanding and far less stressful now I am out of the big old house. I can honestly say I have not missed it at all. The move was a smooth transition from country to coast. Every day feels like a holiday looking from the windows to see the tide go out and the seabirds come in. Herons, Oyster catchers, curlews, gulls right outside the lounge window, wonderful walks directly from the front door and empty beaches within a short distance. Life on the estuary is just as it should be.

 

The Breathless Breastless exhibition can be viewed on line : http://www.breathlessbreastlessproject.org/

May 2014

Things have been quiet with my blog as the art project has taken over and has been keeping me busy almost full time! Just five weeks until the exhibition opens in Aberdeen on 12^th June. Things have really taken shape and there is now a website for the Project, check it out and also like and share our Facebook and Twitter pages!

http://www.breathlessbreastlessproject.org/

 I continue to learn from this whole experience. I built the website myself which was at times challenging and I was grateful for the online support team to guide me through the issues I found myself faced with. I am very grateful to have secured some sponsorship for the project from Interwell, The Fine Food Company, family and friends and Aberdeen City Council. This means we have been able to pay for domains, build a website, advertise the exhibition and print flyers and posters as well as a creating a smart stand to display at our exhibition venues.

Cancer Care.org and Macmillan have shown interest in the project and have provided us with posters and support material, Knitted Knockers – a group of volunteer knitters have provided us with a pair of wonderful bright knitted knockers, a colourful alternative to prosthesis or pads. Maggies Centre are displaying our posters and promoting the Project online for us and will be sending a support volunteer to our event.

I have been out and about networking and contacting groups / organisations via e mail and Facebook to promote the Project. I found myself at my first “Lunch & Learn – Meet The Press” a few weeks ago, which was a valuable exercise learning how and when to do press releases and provided the opportunity to meet the media from our local area.

Away from the project, life throws up it’s challenges from time to time. We had a worrying time for a short period when Paul found a lump under his arm and the doctor referred him to the hospital, who in turn wanted a biopsy and removal of the lump under general anaesthetic. March 6^th was the 18 month anniversary of my mastectomy and I found myself sat at Paul’s bedside and watching him be taken down to theatre. I am very happy to say that after a stressful two week wait we received the news that the biopsy was benign and nothing to worry about. That’s was of course a massive relief and serves as another wakeup call as to how delicate this life can at times be when things hang in the balance.

It was devastating news to hear that Hannah, who was admitted to hospital on 10^th February and told that her cancer had spread, died yesterday morning from advanced breast cancer. Hannah was first diagnosed just under two years ago and had a mastectomy and chemotherapy and believed that her cancer had gone. In February she found out the breast cancer was in her liver and her lungs, inoperable and incurable. Hannah was 36 years old. The Breathless Breastless Project is proud to be exhibiting two portraits of Hannah, who wished to share her journey with the world.

Recent good news from the genetics clinic, that I do not carry the BRCA1 or 2 mutation. This has a big impact on future breast care for my daughters. It’s a huge relief that they do not have to make decisions about their own genetic testing or the consequences of a positive result. They are still said to be at moderate risk of breast cancer in the future and I myself am at moderate risk of further recurrences due to family history. As such the girls will be able to obtain screening from around 35-40 rather than having to wait for the national screening program at 50. We will all remain vigilant and do our monthly breast checks.

Coppafeel is a fabulous charity set up by Kris, who was diagnosed with stage 4 breast cancer at 23. Kris has been living with the disease for five years. She continues to spend time encouraging young people to be breast aware, through events at Universities and festivals. Find out more on her website, sign up for a monthly reminder to check your breasts - http://coppafeel.org/kris-story/

 

The Breathless Breastless Project is hoping to take the exhibition to other UK venues next year, if you know a venue near you that may be interested in the exhibition, please let us know!

 

Must close for now, I have the small issue of having to finish packing boxes for a house move in a weeks time!