I have discovered the absolute best medicine to recover from the trauma of the diagnosis and surgery, and then from chemo, and I highly recommend this medicine to all. The name of the medicine is “hide from the world and escape to somewhere beautiful with your family”. I have had the privilege of doing this twice now. Both occasions were short breaks that were booked long before I started on this roller coaster, and turned out to be timed beautifully for when I really needed them…..
Throughout the first few weeks of being diagnosed with breast cancer and then undergoing surgery, the only way I could describe myself was as “broken”. Looking back on those first few weeks of April I realise now how numb I was with shock. I was so sure that the lump I’d found, which could be seen on mammogram, then ultrasound, was just fibrous tissue left over from my breast-feeding days. The core biopsy under local anaesthetic of the “area of concern”, performed immediately after the mammogram and ultrasound, was traumatic and made me feel so violated that I wept inconsolably in the car afterwards, before going back to work to close up my office for the Easter break – I’d ducked out quietly for a one-hour mammogram appointment, and returned 5 hours later. My staff had probably wondered where the boss had disappeared to! My poor breast was sore, black and blue for days. However, even after all this, and despite my scientific knowledge in the cancer field, my optimistic view on life had left me totally unprepared for the biopsy results, “I’m sorry to tell you that the news is not good, you have breast cancer”.
It was school holidays and I went straight from hospital after the surgery to a cottage we had booked some time ago at the foot of the Victorian Alps, near Bright. In my pain-killer drug-induced haze I found myself with my husband and three boys in a lovely mud-brick cottage on a lavender farm, with beautiful autumnal views through the valley towards the majestic peak of Mt Buffalo….and it was perfect. The world stopped spinning and I could just be. Cafe hopping and short strolls by the Ovens River were all I could manage. My brain just couldn’t process what had happened over the past week or two. It wasn’t until a few days later that the haze lifted and my brain started to come to grips with the enormity of what was happening – my surgeon rang as we were half way up Mt Buffalo to say that although it was confirmed to be early stage cancer, the margins around the tumour were too close for his liking, and one lymph node was positive, so I’d need some further surgery. Knowing more what we were dealing with was such a relief – it is impossible to deal with situations and get on with things if the brain can’t process the situation. We spent a few more days at our idyllic hide-away in the valley and I was able to get on with healing and being ready for the next round of surgery.
Three months further down the track and I’ve now had two rounds of chemotherapy. I was meant to be on the TC4 regimen – 4 cycles of taxol and cyclophosphamide – but that ended up being a complete bust. The cyclophosphamide went in without any problems, but not so the taxol. Apparently it is not uncommon to have an adverse reaction to the taxol as it is being infused, despite being pumped full of dexamethasone beforehand. We got 7 mls in and wham! a strange taste filled my mouth and an intense heat rushed through my chest and up into my face. Suddenly it was like I’d been kicked in the kidneys, with an intense nerve and muscle pain all over, and my chest started to tighten. In a less-experienced unit I could have been in serious trouble, however my nurse was great and immediately stopped the infusion and injected antihistamine. The reaction quickly subsided and we all sighed in relief. I was then given phenergan and more dexamethasone and a short while to recover. When this reaction does occur, most people go on to a second challenge without any problems. So off we went with the second try. This time 4 mls went in, the taste and heat infusion were immediate give-aways that I was reacting again to the taxol. Whack! the kick across my lower back and I knew to call it for what it was. Once again, the quick actions of my nurse stopped the reaction, although this time the lower back pain radiating down into my legs lingered. On the rare occasions when someone reacts twice to taxol, it is usually because of the formulation the drug is made up in. Thus, after a night in hospital on fluids, we were all set to try Taxotere – a drug made from the yew tree, just like taxol, but in a different formulation. One ml infused, that familiar bad taste, heat rising and the kick in the kidneys. Saved by the quick actions of my nurse again. So no taxanes for me. No-one likes to be the “special one”, where the nurse says “Gee, I’ve never seen that before” (although actually this type of reaction is not completely unheard of in clinical circles) – obviously yew trees and I just don’t agree with each other. I got to go home and have a horrible week of being unwell, although it was impossible to know what were true chemotherapy side-effects and what were the effects of the adverse reaction and the multitude of drugs that were pumped into me to counteract it. I only ended up with a total of 12 mls of taxanes, and yet the nerve and muscle pain, and the numbness and tingling were profound….I can’t imagine the pain and neuropathy if I had been able to tolerate the whole dose. I have now been put on a CMF (cyclophosphamide, methotrexate, 5-fluorouracil) regimen, 6 cycles, 3 weeks apart.
It was school holidays again. With my first round of CMF now behind me, I was desperate to make sure I was well enough to fly to Queensland for the family holiday we had booked 6 months ago, using a free flight that I had, and all my frequent flyer points (and therefore no chance of refund or exchange). It was touch and go up until two days before we left, but suddenly I felt significantly better and we all flew up to Noosa. It was a very different holiday to what we were used to….not much running around, mostly cafe hopping, sitting on the beach, river and beach strolls and gentle boat rides. We stayed in a wonderful apartment, with a comfy sun-lounge on a wide shaded verandah, overlooking the river. Once again, the best part of the holiday was that I got to hide from the world with my family and just be. While Victoria was shivering, we were in short sleeves and warmth and sun for nearly the whole 8 days we were away. For a brief moment in time I actually nearly felt normal again…..although the waves of tiredness, the nausea and tummy upset and the fuzziness in the head kept reappearing just in case I completely forgot. I can also feel myself changing. There is a stillness and quietness in me now, like never before. I’m not sad or depressed or angry, I just want to be quiet and still. I don’t think it’s laziness, although it could be a result of having no energy, but it’s more like an inertia of the mind and body that is drawing my surroundings and the energy of nature into myself. I’m hoping one day in the not-too-distant future, this will reverse and I’ll be able to give back, but at the moment I just want to be. The importance of these short breaks away from ‘normal’ life can not be underestimated for their healing power. They are a moment to catch breath, relax the body and refresh the mind and spirit.
I have recently learnt via a friend about the Otis Foundation. What a fantastic organisation! In their own words “The Otis Foundation provides retreats for women and men living with breast cancer at no accommodation charge. We aim to provide immediate relief to people who need a short-term break away……….Otis retreats offer time out to relax, reconnect and regroup for those dealing with the challenges that come alongside serious illness.” I have not yet looked into using this service, but will definitely be keeping it in mind for life over the coming months. I have experienced first-hand the benefit of time away with my family, and I think the Otis Foundation should be commended for their vision and mission.