A week is a long time when you are back from holiday is it not? And this one for me was a bit of a roller coaster I admit. It’s a tale of two halves, one of person centred care and another of being a tourist in your own town.
So are you sitting comfortably?
This story begins with back pain. A thing to fear for those with a history of breast cancer I think its fair to say (one of the many lets be honest). But I have been down this road before and know many other reasons exist for back pain and found a variety of solutions from pain relief, to physio’s, zumba(!) and yoga over the years when I have had a problem. But just prior to going back to work I could feel something build up. I went for massage and it nearly killed me (ok drama queen language there…but it felt a bit like that,honestly). And as I returned to work I could feel I was getting worse. I rationalised (just tired, getting match fitness back etc) and thought I would wait to see how I was on holiday. Worse again. Its swimming that’s doing it, again rationalised and made a plan for self referral to physio. My husband (he of the long suffering variety) suggested I needed a proper diagnosis first, instead of an Audrey knows best approach.
SO when I went to my follow up from surgery appointment with the plastic surgeon I asked if I might have a quick word with the breast care nurse. I thought she could help me think through how best to approach it. Mention it to the surgeon, she said. What the plastic surgeon? Yes indeed. Now I didn’t help matters as I turned up in the morning instead of the afternoon, not sure if that was a CRAFT (see previous blog for explanation) moment or their mistake. I offered to come back knowing the pressure on them all but no, they found the surgeon and he saw me. Sorry I cancelled my surgery, I grovelled. No worries was his reply…its totally lead by you. We can do it anytime or not at all. Really, said I, I am more concerned to get my back pain sorted than matching boobs at the moment (ok I might have phrased it differently but you get the gist). And so he examined me, reassured me he felt it was likely to be unrelated to the breast cancer, given my early diagnosis both times, but as we know breast cancer can behave unpredictably. The only way to know is a bone scan, what did I think. I admitted to having mixed feelings as I know this triggers anxieties and procedures that frankly aren’t much fun. But on balance the scan would give me information I could then act on. That’s when the breast care nurse again stepped up and she organised the scan.
It was two days later….I thought I would wait weeks. I was welcomed, talked through the procedure and put at ease. Drinking large quantities of tea, coffee and water is not something I normally find a challenge but somehow being told to in two hours makes it so. Also being radioactive and therefore having to avoid pregnant women and children is tricky in a hospital environment. I don’t suppose the woman I kept moving away from while I tried to get served with yet another cup of tea reads this blog, but just in case…its not you!
I am delighted to say all was well. Yes there is an underlying cause of the pain but nothing concerning. But what I really wanted to share with you was just how cared for and supported I felt yet again within that service. So what stood out? I was listened to, they didn’t trivialise my concerns, they were flexible, they didn’t make me feel bad turning up at the wrong time, they didn’t say “that’s not my job”, they engaged me in the decision making all along. The radiographers took me through a scary procedure with information and kindness. The breast care nurse warned me not to worry if they did two scans: they did, I didn’t…much! They provided a safety net with plans for information and follow up. This was a stressful time for me as you may guess but how they supported me through it made a huge difference. This is true person centred care.
As part of the Quality Alliance Board for the NHS in Scotland I know there is an important focus to improve person centred care. It was good to experience it in action. Feedback in all its forms can enhance this. Breakthrough Breast Cancer’s Service Pledge gives feedback on what works well as well as what to improve; both are important drivers of change. The third sector has an important role to play in this, facilitating the patient voice to enable and to motivate. But for now, the breast cancer services in Lothian, take a bow!
So as the relief sets in with the outcome of the bone scan I now need to refresh my getting back to match fitness plan. The return from holiday was always a risky time, when my energies would not match my expectations. So I am building in ways to pace myself and also build my strength in my recovery. A marathon rather than a sprint I am learning.
Reasons to be cheerful. Our friends visit and the Edinburgh festival provided great distraction, fun and support while I awaited the result. We went to a fabulous exhibition about Catherine the Great, watched street theatre (the cheeky puppet above being my favourite), went to the art festival (tapestry exhibition at Dovecot studios was superb) and later after a rickshaw ride down the Mound (help!) found a free comedy show. The last act was a North London Jewish refugee (from south London) …his joke not mine… I leave you with my favourite joke of his: Older couple, the wife calls down to him, “will you come upstairs and make love to me”…his reply “I cant do both”. Laughter is great therapy, is it not?!