I completed my last blog just after my first surgery, a lumpectomy, in July 2020. A few days later I got the results from the tissue taken – I had a pathological complete response – results don’t come better than that. I sobbed tears of joy. It sounds strange, but they didn’t last when I realised it didn’t change my treatment plan. And Added to that, I felt a sense of guilt at having had such a good response so I didn’t need a mastectomy – why should I get to keep my breast when others didn’t get that choice?
I really struggled with the decision to have reconstruction. Not being able to meet people in person felt very hard as I wanted to see other reconstructions and hear other experiences. I turned to the OBBG Facebook Group and a member very kindly spoke with me about her experience and shared photos of her reconstruction. She had no regrets about her surgery and that certainly swayed my decision to go ahead. Reconstruction isn’t cosmetic, it’s restoring you to how you were. I also found this really useful:
I had a LICAP (Lateral intercostal artery perforator flap reconstruction) on 18/08/20. The day of surgery was awful – having arrived at hospital at 7am, I wasn’t taken to surgery till 5pm, by which point I needed a wheelchair as I was a faint, sobbing mess! An OBBG buddy was also having surgery the same day and I had wrongly assumed that something had gone wrong for her, and that was causing the delay. The situation was made worse by that fact that thanks to the pandemic I had to wait alone in my room, the Wi-Fi was down and all I could think was my surgeon would be hungry too and in a rush to get home. The temptation to call my partner to come and get me was huge – did I even need this surgery, it’s ‘only’ cosmetic? I did use the Headspace app to practice some mindfulness while waiting and visualised my OBBG mindfulness buddies who I had come to care so much about via Zoom. The surgery, however, was a success but when I got back from surgery it was so late the kitchen was shut! Once the nurse tracked down some cereal I felt better and had a good night. I was discharged the next morning.
Post-surgery recovery was straightforward and once I could stop shielding, we even managed a few days at Center Parcs – with strict instructions not to go in the pool. I had 15 fractions of radiotherapy September and this was a very simple process, and my skin was fine. We managed a week away in Wales in Oct, just before the second lockdown. Being by the sea was very therapeutic. By then the radiotherapy fatigue was kicking in – my partner commented that our holiday was ‘a little more pensioner’ than he was used to!
In December the OBBG group had the difficult news that a much admired member’s cancer had spread and she had a very limited time. She passed on Boxing Day, and this shocked the group. But we were able to share our grief and pay tribute to Justine together.
I continued with immunotherapy every 3 weeks through till 6th March 2021. I have now completed treatment. I expected to feel joy at such a positive response to treatment, but I feel numb. I feel like I have physically aged. The combination of treatment and the menopause have left me very achy and tired. From an OBBG talk I discovered YES oil-based lubricant to assist with vaginal dryness.
I am desperate to feel energised and get back to ‘normal’, but I feel much worse than I did at the start of treatment. I am not a patient person, but I have had to accept I need time to recover. I think I expected my full head of hair back as soon as chemo stopped – it’s been a shock to calculate that it will take about 2 years to get back to pre chemo length. I think that the pandemic has added to the deterioration of my physical health as I have been shielding or in lockdown for most of the last year. I haven’t been able to access the usual complementary health supports, or even have face to face meetings with the fantastic NHS team. I do daily shoulder exercises in the area I had radiotherapy, as it feels tense. My goal is to be able to take part in Parkrun again when it re-starts in June – I know a personal best is out of the question, but I am hopeful for a gentle jog.
Virtual OBBG has been great for connecting with people affected by breast cancer. It has given a focus to my week, a sense of belonging and some very useful mindfulness skills. I have also signed up to dance and exercise classes to help my recovery.
https://www.movedancefeel.com/about
https://www.pennybrohn.org.uk/find-help/online-services/
I had my first annual mammogram and that came back clear. I am waiting for another heart scan and my portacath removal. Even with a good prognosis, I have anxiety about the cancer returning. My oncologist said she can’t say I am cured, but she doesn’t expect to see me again. The OBBG monthly talks remind me that secondary cancer can be treated and treatments are improving all the time. I need to enjoy my life day by day and I am looking forward to a flurry of well-earned holidays when lockdown ends. I am mindful that my treatment plan could have been very different had I been diagnosed a few weeks later, once the pandemic had started. It does feel like roulette at times, but I am so thankful for the knowledge and skill of the treatment teams I’ve had.
I want to acknowledge that science saved me; there is nothing about how brave or strong I have been. Cancer is caused by a complex mix of environmental exposures, inherited risk, and random chance. I was lucky, I had a lump in a place I could feel, a type of breast cancer that is receptive to ever advancing treatment, and lucky to live in a country with the NHS. My thoughts today are with those who haven’t been so lucky.
Ali