Writer, mother and grandmother DIANE TREMBATH lives in Exmoor. After being given the all-clear three years ago, she has recently been diagnosed with breast cancer for the second time.
She has agreed to write a diary about her experiences for Live Better With - sharing her observations and insights, both practical and emotional. Here's part 6...
I would hazard a guess that most people who have gone through major surgery, as part of their cancer treatment or for any other reason, tend to lose any sense of time, particularly in the first few days after surgery. This was certainly my experience. Not that being temporarily adrift was unpleasant; quite the reverse, I felt much better than I had expected – almost euphoric. This sense of euphoria is due primarily, to the effects of anaesthesia drugs and can take some time to wear off. But wear off it does. Nevertheless, it helped me through that first week of recovery. I felt quite positive and upbeat, if tired, and I can honestly say that although I had some discomfort, I wasn’t in pain. That was a surprise; I had assumed that there would be pain by the bucket load.
So, the day after surgery and feeling suitably buoyed up, I started my thrice-daily Breast Cancer Care exercise regime and, by the end of the week had also managed to a short walk with the dogs, although I left the ball chucking to my friend, J. No point in being reckless. I was delighted to discover that I could knit with relative ease, and could still enjoy reading; by the end of week one, I’d finished two books.
I remembered from my previous experience of breast cancer surgery that it helped to wear something like silk or bamboo next to the skin and fished out the large but lightweight silk scarf I had used before and combined that with a slightly stretchy soft silk crop top. I also started to wear my ‘softie’, the temporary prosthesis that my breast care nurse had given me. This gave me some protective padding across the wound, as well as restoring the appearance of being double rather than single breasted.
Adapt and go
But then there was the drain. Post-surgery euphoria helped me to deal with the inconvenience of being attached via a length of surgical tubing to a large bottle, 24 hours a day for a week, but coping with a drain was more challenging than anything else at this stage. The tubing, which was held in place by a surgical stitch just below the outside edge of the wound, was quite long and kept catching on my knee and each time this happened, I’d feel a sharp pull and was terrified that I’d dislodged something. Then I had a light bulb moment: like many dog owners, I use a special whistle for training and for different commands and my whistle hangs from a lanyard. So, I popped the lanyard round my neck, and attached the surgical tubing… problem solved and no more heart-stopping moments!
Walking round with a gradually filling half litre bottle of blood and serum wasn’t the best of experiences, despite the lanyard hack - and the fact that the bottle was tucked into a soft cotton bag shoulder bag. This, like my arm pillow, had been donated to the hospital for breast cancer patient use. Unfortunately the bag’s synthetic webbing strap irritated my skin – another protective job for the silk shawl to tackle! I wasn’t getting on too well with the softie’s synthetic filling either; it seemed to be making the site of the wound feel hot and uncomfortable, so I pulled out the filling and replaced it with a small, clean cotton scarf, rolled into something approximating the shape of my missing breast. One becomes quite adept at adapting.
A week after surgery, I was back at the hospital feeling a mixture of trepidation and an impending sense of relief as I wasn’t looking forward to have the drain and the tubing removed but assumed I would feel better without it. The less said about the procedure the better, perhaps, as everyone’s experience is different. My breast cancer nurse could not have been gentler and she had told me beforehand that removal sometimes proves painful and explained why this might happen. It was definitely a short straw day and, when I saw how much tubing had been inside me and how clogged it was, I wasn’t surprised that I had let out a yell, gritted my teeth, and struggled to stay on track with my yoga breathing.
In search of comfort
I would like to say better out than in but, sadly, this was not the case. Once I was home again the wound pain kicked in. I was permanently exhausted – knitting and reading went out of the window - and the mastectomy wound began to feel hot; the surrounding skin was looking fiery and any residue of euphoria disappeared. The recommended painkillers didn’t even take the edge off the pain, although ibuprofen, rather than paracetamol, did help me to relax a little at night, enabling me to sleep for two or three hours at a time. Using my arm pillow and resting my affected arm and side on a normal pillow at night offered extra support and comfort. A lavender scented candle, using lavender spray on my pillow, and Pukka Night Time Tea helped too.
Homeopathy is also playing a vital role in supporting me in many aspects of this second cancer journey. Although I‘m a qualified homeopath, I have avoided self prescribing – this is not first aid! I am relying instead on my highly experienced homeopath, whose professional knowledge and skills enable her to be entirely objective when it comes to prescribing.
Three days later I was at the hospital again, to see my surgeon, Mr M, and to get my results. L, the nursing assistant who helped me into a hospital gown was a welcome and familiar face. She had been brilliant during my original, very painful, biopsy in 2010 and was genuinely sorry to see me back again. She mentioned that Mr M was not only an excellent surgeon but a kind and gentle doctor too. ‘He listens,’ she said; I’d heard much the same from the anaesthetists and from all the breast cancer nurses. Given that I hadn’t got off to the best start with Mr M before surgery, I was hoping that they were right. They were...
Mr M arrived, smiling reassuringly; the surgery had gone very well, and the even better news was that the cancer had not spread to my lymph nodes. And I swear I saw a hint of a wink when he said: ‘I only went to level one, you’ll be pleased to know,’ a reference to the awkward discussion we’d had before surgery about lymph node removal.
The less welcome news was that I had an infection in the wound - but that could be treated. The team checked my previous notes, to ensure that I was given an anti-biotic that would not cause the sort of side effects I had experienced when I had had an infection following my first breast cancer surgery.
A week on and infection has been zapped. The past few days have not been easy and the pain, soreness, swelling, discomfort and patchy sleep have slowed me down. But I keep reminding myself that, given time, all this will pass. I’ve now moved on to the second level of exercises, and enjoyed two manageable half-day outings and a visit from my understandably anxious daughter, who lives on the other side of the country. J and I have watched some excellent programmes and films on BBCiPlayer and Netflix, and I’m gradually getting back to work and some routine daily activities and walking.
Eating for recovery and health – and the next stage
I could not, however, have achieved nearly half as much as this without the superb care I have received both at the hospital and from my wonderful friend, J, who, as well as ferrying me to and from hospital, picked up all the domestic reins, including expert canine care. She is the most excellent cook too and has produced a delicious, varied, colourful and nutritious daily menu – think Mediterranean diet for vegans. It helps that we are of the same culinary persuasion!
Of course, the journey to recovery is only just beginning: there’s a DEXA scan next week, as letrozole, which has an adverse effect on bone density, is part of the treatment plan. It also comes with a raft of side effects, so deciding whether or not to take it in the first place, or to continue or to stop taking it at some point, requires careful, well informed consideration, on the part of a patient. It’s that quality of life versus quantity of life conundrum, which we can only approach from an individual perspective and which is dependent on so many other factors, such as age and personal circumstances.
For the next three years, there will also be three-monthly lymphoedema checks, as I will always have an increased risk of developing the condition at some point, and there will be annual breast screening appointments for the next five years.
But all this is dependent upon the excellent standard of breast cancer detection, treatment and care at my NHS hospital continuing; many of us in the region it serves owe our lives to it. We can only hope that this will be the case in the years ahead.
To be continued
Diane with her beloved canine companion Pumpkin
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