In my last blog I touched on the benefit of massage and how it had helped to calm and support me during the first 10 weeks leading up to surgery.
Forever, I have been an advocate of complementary health care, for some, it is hard to believe or to prove it’s benefits or efficacy.
For me, it is not just about it’s very physical benefits, but also about allowing one to enter a space of self care and shared responsibility. Sadly, I am yet to find a GP who is happy about the amount I want to engage in my own health, it has never felt shared.
Who knew there were so many options? As soon as it was decided that a mastectomy was needed I was sent to the plastic surgery team to see what my options were. It had been suggested to me that if I could have one using my stomach tissue, this would be preferable to using my back muscles, as being a hairdresser my arms are in the air constantly.
I was approved for a DIEP mastectomy, they will use my stomach tissue/fat to recreate my breast. I have never been slim and finally that abdominal fat that I would prefer was not there, was going to come to some good use. They tested my muscle strength and I had a scan, to map the entire stomach tissue precisely. They would also be removing a blood vessel and vein from the stomach to keep the newly transplanted skin alive.
Here are the some-what gruesome details of the 10 hour surgery: The breast cancer team removed the breast and some lymph nodes for further testing. To remove the breast tissue they cut around and discarded the nipple, all of the breast tissue was taken out through this new hole, which is now the only scar I have on my new breast. (I was extremely angry at the thought of losing my nipple leading up to surgery and am surprised to report, I am now entirely happy with my nipple less new breast) While the cancer team were getting nice clear margins, the plastic surgery team were working on the stomach. They cut from hip to hip, one line low, just beneath the pubic hair line and another up over the belly button to remove the entire area. They then sewed me back up, resulting in being hunched over while waiting for the skin to stretch. It took nearly 12 weeks for me to be fully upright.
Waking out of surgery was pure joy, my delightful surgeon Oliver suggesting I looked like I was at a party. I do not remember why, but I do remember being euphoric. Some women I have spoken to reported being relieved the cancer was gone, I did not get that feeling of relief until days later when I found out my lymph nodes were all clear. Post theatre, I was taken to ICU for 12 hours as they needed to monitor the transplanted skin every 15 minutes to make sure the blood vessels were pumping. This 12 hours were again a total joy. I have always loved my sleep and being suspended in what felt like a blow up duvet in a dimly lit room with a morphine drip and nothing to do but drift in and out of consciousness was OK by me.
Shock, horror, hell, dumped in a bright ward with alert chatty nurses was a rude awakening. The next 5 days were less nice, being aware of the drips and drains and my new painful immobile body was possibly the hardest time. For those who know me, food is my saviour. I was in food hell and couldn’t wait to get home.
Day 5 – I went home and my healing began. Amanda Berlyn my massage therapist had stressed to me how important it was to connect with my new breast and body. I had sat quietly in hospital trying to do this but the public space made it difficult. Once home, I was really able to see what was going on. I made an effort every day to bend and stretch, doing the physio the doctors had given me. I was very quickly confident enough to remove the tape and gently massage my breast, arm and abdomen. In fact even while I could not stand for more than a few minutes at a time, I was giving myself a bed massage, reaching as far as I could, which was pretty much everywhere but my back.
My body was painful so being able to do self-massage was perfect as I knew exactly how hard was comfortable. I invested in an array of beautiful oils and twice daily gave myself an all over massage, focusing on the areas I knew needed it but enjoying reaching for my toes also. My logic was “all gentle movement is good movement.”
I noticed pretty much immediately that my pain levels were less post a massage. To this day, 7 months later, I give myself a massage every day, if I don’t manage to for any reason, my pain increases. Many women talk about a constant pain post reconstruction, I am hoping to crack this daily pain, and even if I don’t, I know it lessens my pain. One day at a time.
One week after surgery I saw Amanda for the first time, she guided me through some gentle movement exercises and gave me a massage. I have no feeling in an area of my stomach and none in about half of my breast. It was upsetting to know you are being touched but not to feel it, I insisted on watching as I needed to know what she was doing and it also helped my learning. My specialists have told me that I may never regain feeling in these areas but I am hopeful that there may be improvement, I do now have some feeling across the whole of my stomach but none yet in the breast.
The reality that I already knew my practitioners made my experience so much easier. People who know you and who you trust at times of stress are invaluable. Because of my daily massages I often felt that I did not need to receive a massage. 2 months in, still slightly hunched, I really wanted my back treated, so being unable to lie on my stomach, I opted for Hydrotherm massage, laying on warm water filled pillows, the practitioner has the ability to push away the pillows beneath you and is able to work your back while you are laying on it. The whole thing is a dreamy, floaty sublime experience that I will continue to have forever. Sophie was my saviour here.
Since my surgery I have had monthly acupuncture sessions with Marian Fixler, cranial osteopathy with Zenna and have just started having weekly myofascial release with a new practitioner to Shine, Linda. Some of these treatments have been challenging at the time but all have resulted in a reduction of pain. The myofascial release treatment turned what had been a concave and very painful area on my breast into a convex and pain free area after one treatment. I can see that the shape wants to concave again and so I am going to continue to treat the area and see if we can create long-term improvements. It is not just working on the visible scars, but also what the scar tissue is doing beneath the surface and how it connects with the Fascia throughout the whole area.
My surgeon was a genius and I am happy and grateful for his skill and for the NHS. Everybody deserves great care at a time like this. He has put me back together in the best way possible but he cannot rebuild my lymphatic system and he cannot control what my scars and fascia do postoperatively. Those areas are mine to heal and manage. I feel immensely grateful to be one of the owners of Shine and to be surrounded by so many talented and caring health professionals. My advice to anybody with a scar any size is to start connecting and massaging it/you as soon as you can and where possible use the help of a trusted professional.
Next month I am being a model for a scar tissue work-shop, I will keep this blog updated with information as and when I learn more.