Thursday 21 July 2016

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 3rd to 2nd 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!