In 1996, I found I had to face a rather different challenge, when I was diagnosed as one of the 1 in 12 women in Britain who will develop breast cancer at some time in their life. I found that there were a lot of similarities between crossing an ocean and coping with diagnosis, treatment and recovery.
I was advised to keep a journal by Colin Ryder-Richardson, from the charity New Approaches to Cancer, and encouraged by Graham to get it started. Here it is.
The skin on my chest is quite transparent and often I can see the tracery of blue veins when I look in the mirror. This day, two veins across the upper part of my right breast appeared to delineate a small swelling, that at first glance I took to be a bruise. I tried to recall whether, in the course of moving things around in the garden shed, anything had fallen against me. It didn't hurt and the area itself didn't actually look bruised. It felt firm and flattish, I recall thinking of it as a little shelf. It wasn't what I imagined a lump would be like. I had more or less expected that a lump would be more like, well, like there was a pistachio nut under the skin, but softer. This lump didn't have a very well defined edge and wasn't softly rounded.
My initial feeling wasn't panic, more concern, coupled with a sort of intrigue. I knew that lumps were fairly common in a women my age and that there were several reasons why you might have one and that it was quite likely to be benign. I realised that I knew nothing about breast cancer and had no idea whether this could potentially be it or not.
My first reaction was to try to get more information, so I turned to my bookshelf, where the only likely sources of help were a 'Dictionary of Symptoms' and Miriam Stoppard's book 'Menopause'.
I now knew that whatever it was I musn't ignore it. Graham would never forgive me if I let this develop without taking action and I used the thought of him as my 'sensible conscience'. However, I also now knew that this could be part of being run down and related to the phase of my menstrual cycle, so I resolved to wait until after my period, which was due in about a week, before going to see the doctor.
Over the next couple of weeks, I examined myself every morning before taking a shower and found that while there seemed to be some subtle changes, the lump showed no signs of diminishing. I noticed a sort of tingling sensation in the area. I now knew that this lump was in the area where cancerous breast lumps are most commonly found. I read in the on-line encyclopaedia about cancer. I wondered how it was possible for breast cancer to be a killer - surely no-one dies from a lump in the breast? I read about metastases and realised that I had no idea how I would recognise any spread of that kind. Because people don't talk about cancer, the big C, there doesn't seem to be much in the way of common knowledge about it. The books that I had read generally tried to re-assure you that 'your lump probably isn't cancerous' and seemed to try and steer you away from taking on board any notion that 'It could be ME'. Funnily enough, around this time, I got 4 numbers up on the lottery!
So my period came and went and the lump remained. I had a second bad cold and spent a lot of time sending emails to Graham, but I didn't want to tell him about the lump yet - not being here, he would worry and wouldn't be able to do anything about it. He was sending me masses of love every day anyway but I did miss having a hug. Having been away from the office for a few days while I was in Canada, I had lots to do and lots of meetings, so I had to wait until the following week before I could fit in an appointment with my general practitioner.
He would write to the consultant and I should get an appointment within two weeks.
After rather a wait, I followed the nurse to Mr M's office. He asked some questions about my medical history and asked if I would mind having a mammogram first, then he would examine me afterwards. I was astonished at how uncomfortable the mammogram procedure is and wondered what it was doing to the lump, to have it squeezed so! The radiologist took two xrays of each breast, from different aspects.
I then went back and Mr M examined my breasts and looked at them when I was sitting, leaning forward, lying down etc. He told me I had a lump in my other breast as well, but not anything to worry about - he wanted to make sure we were talking about the same lump, so he asked me to point to it. He then took a needle biopsy, which felt like he was digging around to pick up something useful . Later he was to tell me that it felt 'gritty', but after I had got dressed and sat at his desk, he told me that he thought I had menopausal mastitis (or something like that) but that the diagnosis would be confirmed (or otherwise) by the result of the biopsy, which should be available the following Thursday.
I have to say, I was not entirely convinced that what I had was a benign condition, it felt wrong. Also, within the previous week or so, my breast had developed a crease near the armpit, which suggested to me that the lump, while being perhaps less well defined, was actually getting larger. I left the hosptial with a very sore area from the needle biopsy and feeling rather sorry for myself. Now I had to wait a week for the results.
At this time, Graham must have been away again. Over the next few days I found it hard to keep my mind on track at work and I didn't have a clear way forward. I didn't somehow want to give credence to the idea that the lump might be cancerous but of course I knew that that was why we had done the test and that there was a chance that it might be, no matter how reassuring the doctor and consultant were. So it was an anxious time.
When Thursday finally came, I was busy at work, as usual and Edna gave me a message to call Mr M's secretary. When she said that he wanted to see me tomorrow, my heart sank. I knew this meant trouble and that the news wasn't likely to be good. It was especially disturbing because I had left with a clear impression that I was going to get the results by phone, so it seemed that this outcome wasn't expected. The next 24 hours were terribly terribly anxious and a rotten way to start a birthday!
I guess I still didn't really want to face the reality of what I might be told, so I am glad that Graham asked if he could come with me to see Mr M. The details of that meeting would have to be told by Graham, I only remember being told that I had an invasive malignant tumour......
Nothing I had thought or considered remotely prepared me for the shock of this news. I did in fact later remember most of the details of what Mr M said, as I think he was careful to be clear and concise, but I was deeply shocked and couldn't think of anything to say or questions to ask. I might die! If I do nothing, I will die from breast cancer. Those thoughts were enough to keep most other things at bay...
Mr M examined me again and then when I was back at his desk he showed me a drawing of my breast and indicated the tumour and a segment around it and some small circles under the armpit. He explained that a wide local excision to remove the lump, plus an area of healthy tissue 1cm around it plus radiation treatment was equivalent to having a mastectomy. His recommendation was to remove the lump and some of the axillary nodes and then to follow this up with radiation and tamoxifen, a hormone therapy which carried with it a risk of endometrial (lining of the womb) cancer but that the benefits related to its' affect on preventing spread and recurrence of the cancer, outweighed the risks. There were some additional side benefits in that tamoxifen seemed to protect against heart disease and osteoporosis. It would be taken for 2 - 5 years, every day, although if you happened to miss taking one it wouldn't be critical. There were some other side effects which he told me about too, hot flushes, irregular periods, maybe some of the others - having read a good deal subsequently I am now well informed as to the potential effects of tamoxifen. The radiation treatment would be every day (5 days a week) over about 5 weeks. I could choose from two regional hospitals for the treatment.
Graham asked some question - prognosis, life expectancy; I don't think he got a specific answer. Mr M said that the Breast Care nurse would be in touch with me and that she was a good resource to provide help, support and information. He was really sorry that he had overlooked the fact that it was my birthday. He and the nurse suggested I go to the pub! When we left Graham & I had a big hug and I had a few tears. I felt really scared. We went home and opened a bottle of champagne - well, it was my birthday after all, and it seemed a better idea than sitting there worrying - and then took their advice and went down to the pub for dinner.
Graham came for lunch. He is making progress on the redecorating of our new bedroom. My friend Gillie came and was very bright and made me laugh. She noticed I was looking tired and left me for a rest. I had about 20 minutes then the nurse came and suggested I got out of bed for a bit. Then another friend came and brought me more magazines and talked about the Colour Therapy (Aura Soma) she had seen at the Festival of Mind Body & Spirit. By the end of the evening I had had visitors almost continuously for about 4 hours or so, so it's hardly surprising that I felt very tired and rather drained!
When the night nurse came in to get me ready for bed and made me a hot drink she said how tired I looked and I started to feel a bit weepy. I snuggled up with Sweep (the glove puppet, a staunch friend and supporter, who has travelled the world with me) and some tissues and had a few tears before I felt more relaxed and gratefully ready to sleep. Woke in the night and found that my underarm started to hurt for the first time. I had a couple of painkillers, anther little sniffle and then back to sleep until about 6 am.
The questions start to rise to the surface - not so much 'why me?' more 'why?'; Why DO so many women develop breast cancer? Is it a disease of the breast or of the whole body, which manifests itself initially in the breast? How should I approach the next steps? I feel less inclined to try and 'get back to normal as soon as possible' than I do to 'use this as an opportunity, a catalyst to change the content and balance of my life, my diet, my environment'. I have a strong sense that I should use this time to channel my energies towards not only my own healing, but to the wider community of sufferers and those who are at risk of suffering in the future.
I am receiving 'treatment' which does not necessarily equate to 'cure'. We don't understand what the origins of breast cancer are and we have no means of preventing it and no effective measures to offer young women for early detection (as in cervical cancer) of a treatable pre-cancerous stage. People like me should be lending weight and support to the move to get women better informed, better treated and better listened to but also to add pressure to the lobby for more funding and research into prevention and early detection.
New treatments are being investigated and these should be encouraged. It is starkly noticeable however that the medical profession is still a long way from holistic treatment and the 'CUT IT OUT' approach seems to preclude a real consideration of the underlying situation. No questions have been asked about my lifestyle, where I have lived, what possible risks I may have been exposed to in my work or home environment or through leisure activities. I need courage to follow the path of enlightenment and openess. Easy to want to turn your back on it all, get over it and pretend it hasn't happened; go back to normal - increase the risk of recurrence? Miss the opportunity to do some of the things that I have envisaged?
The risk is real enough; despite the positive thinking and the prayers and good wishes, the potential of cancer to take my life early is now a part of my awareness. No-one knows whether in this particular lottery 'It could be me' or not. I have a responsibility to myself and to those I love to not ignore this. I don't think my life can, or should be, the same again. Fear of change and the unknown are part of the scenery of learning to live with and beyond breast cancer. I need to arm myself with the tools to help me deal with this. This is where I feel that complementary healing has a significant role to play. Already, the Arnica, the Rescue Remedy, the healing music (and Sweep!) have helped me to face the fear and unknown of surgery and to recover from the abuses of the operative procedures. I'm sure I have really only tapped the tip of the iceberg. People who are spiritually healthy probably also get breast cancer, but people who are spiritually poor are less well equipped to deal with this challenge. Quality of life comes into focus as the potential duration of it shortens.....but the recognition of this is not a cause for sadness, rather for joy. "Be not sad, Be as the Sun at Midday".
My arm was bothering me quite a lot last night. First it felt cold then just couldn't seem to get comfy. At least my range of movement is now good, the worst bit is where the dressing sticks to my underarm when I stretch upwards. I think that once the scar has healed that I should start doing yoga, where I would get the benefit of the relaxation as well as the stretching and suppleness of my whole body.
Mr M appears to have done an excellent job of conservation - whilst slightly smaller, the shape of my right breast appears remarkably little altered.
I need to try and pace myself so that I don't flag unexpectedly and can do a few things for myself. One of the things I have read that makes sense, is that it is the lack of control that makes you feel powerless in the face of cancer. As such, it seems important to me to take control over what goes in to my body; good food, little alcohol, no 'unknowns' etc. Whilst we don't know what the cause or causes or breast cancer are, my suspicion is that there is an underlying tendency for transformation, which may be exacerbated by environmental factors. Once a cell has taken the first step towards mutation there is then the potential for a chain of complex, interwoven threads to conspire to create the conditions in which the cancerous cells will proliferate:- hormonal imbalances, both internal and external; suppression of effective immune system responses through depletion of essential vitamins and minerals (effect of alcohol, drugs, poor diet, stress, spiritual poverty). Only this kind of relationship between factors is likely to satisfactorily answer the question of "Why Me?", in that the predisposition must be largely common to all women and the environmental factors are common to many (this takes account of the regional and geographic differences in incidence of breast cancer noted in say, Japanese women in Japan, compared to Japanese women in USA), but the specific sequences and relationships of events will not be encountered by all.
The big questions :-
If not, and in any case, can we identify and exclude those factors which are (possibly/probably) interfering with our natural hormone balance (this question of course goes way beyond breast cancer, into male fertility, animal health, earth ecology and so on)
If we can understand the factors that can influence the behaviour of pre-cancerous cells in becoming malignant, is it possible to reverse this process?
Yesterday morning I did a lot of pampering - had a shower and washed my hair, changed my dressings, then had a face pack and eye mask and did 10-15 min relaxation, listening to 'Deep Enchantment' with whale song. Spent most of the morning and afternoon pottering in the bedroom, going through my jewellery, polishing the dressing table, generally giving some care and attention to small things.
I have been reading about Feng Shui and am sure that this will also help me to get my life into a better balance. At the very least, it increases one's awareness of surroundings, atmosphere, light and shade, energy and peacefulness. Graham has finished the painting in the other bedroom, so we shall move in and sleep there tonight. This will put the head of our bed in the East (rather than the West) so it will be quite different. We also have the glorious view over the garden and to the countryside to the back of the house, so I think this will help me to mentally extend my horizons.
My old friend Alistair rang when I was resting after lunch. I had been thinking about him in the morning because I wanted to ask him about homeopathic remedies. He suggested I take Arnica 200 (I have been taking Arnica 6, as that was all I had) and Hypericum 200, followed by 30), which he will send me. I had been looking for the small pink book on common homeopathic remedies, but couldn't find it, nor the rest of the remedies. These I found after his call, which enabled me to start by taking some Hypericum straight away - this is for the damage caused to my nerve endings in my arm. I feel quite cross about that and wonder how necessary it is really. It may be the most lasting physical reminder of this operation, together with the ongoing implication of having fewer lymph nodes.
I know that Alistair questions the need for surgery, chemotherapy, radiotherapy; as I would have before I was affected by cancer myself. I am still unsure about radiation treatment but as yet, do not have any real information about any alternatives. I recognise that the manifestation of this disease at this time IS closely linked to my overall balance of life and well-being and I see in it a message, a warning, that I can get back on the right path for me now.
I think we have to be particularly careful with cancer that you don't end up blaming yourself for having it, as it could seem to equate to a death wish, whilst at the same time, seeing the aspects of your life that may give rise to depletion of positive energies and the strength of the immune system such that the tendency for cells to become malignant cannot be successfully countered. This doesn't negate the need to research into the underlying causes externally and I come to the conclusion that there is a balance to be struck between being a victim & being culpable - at least the latter gives you back some control over the situation, in that there are factors within your own life that can be changed, sometimes quite easily; whereas the external environment takes on the tone of a political battle that requires concerted group effort and actitvity to influence.
I can't go to sleep in the dark anymore, I have to have a light on somewhere. It's not that I am afraid of the dark, it's that I find my thoughts turn 'black' in the darkness and I start to worry and fret. I think it more beneficial for me to think about my condition without the added stress.
I'm thinking more and more about trying to go for a natural alternative to tamoxifen - a doctor in Cambridge has done some tests using diet which is rich in substances that help the body to create plant oestrogens. These work in the same way as tamoxifen by hooking in to the oestrogen receptors. It would seem to mean a diet that is high in soy based foods, high in fibre, especially whole grains, high in red/yellow and dark green cabbage-family vegetables and low in fat (particularly animal fat).
I am concerned about the idea of taking a basically toxic drug every day for two years, five years or possibly indefinitely ad it seems logical that there should be a natural alternative to that. The surgery and radiation are acceptable I think, given that a high-tech modern lifestyle has probably significantly contributed to the development of the disease and that I am currently in a position where I don't have the internal strength and balance to do battle with the cancer cells, it is feasible to use the technology to give me a leg-up. The surgery, at least to my breast, has been relatively non-intrusive - I am less happy about the effect that removal of some of the lymph nodes has had and wonder whether this course of action can really be justified - if the nodes are clear, it doesn't necessarily mean that there hasn't been any spread through the blood stream and if they aren't clear - well they may irradiate my armpit anyway.
There doesn't really seem to be any choice as far as conventional medicine is concerned and it is difficult to track down good information about other possibilities, so I have more or less accepted that the lowest risk is to stick with the conventional approach, at least as far as following the surgery with radiation (we don't want to get tumours along the scar line now, do we?). I reckon I have about a week to come up with a convincing story about an alternative to Tamoxifen. Maybe a second opinion would be a good idea.
Go to have my clips removed. Funny thing was I had thought my appointment was in the afternoon, but at about 9 o'clock I was looking through my notebook and found that it was 10:30! The clips came out very easily with hardly any discomfort. The nurse put steri-strips over the scar to give some extra support and a dressing over that, which she said to keep dry for a couple of days. She told me the scar was healing well, there is a little bleeding where some of the clips were removed. .
I took the Arnica 200 which Alistair sent me, last night and this morning. Tonight I will take the Hypericum 200.The numbness in my arm hasn't really changed. Since having the clips out my arm has stiffened up a bit, as the nurse said to avoid straining the newly healed tissues and not to do vigorous shoulder movements etc.
In general, I am feeling more discomfort now than I have before, even though I am still taking the Dicolfenac Sodium tablets - I guess that is partly the healing process, nerves coming back to life etc. and partly that there is a bit of swelling, which I'm not sure whether it's the normal fullness associated with my period or a post-operative accumulation of fluid.
I need to start taking some regular exercise. I've started moving my diet towards soy-based foods, fish, fibre, cruciferous and red/yellow veg and lots of fruit, but will allow myself whatever treats I feel like. The woman I spoke to at Bristol Cancer Centre said that their recommended diet is as vegan as possible, with supplements. I was surprised that they had nothing to say about alternatives to tamoxifen, but then perhaps that's not so surprising after all, since this was on the phone and they have no idea who I am. I gather that they have toned down their ideas somewhat and wouldn't contradict conventional medical treatment, only complement that treatment.
Appointment with Mr M. He tells me I have multi-focal invasive lobular carcinoma,. Whilst removing the lump, he saw another area that was suspicious, and removed that too. He draws a diagram to show me what multi-focal means. What it means, is that I need to have a mastectomy.....
Oh ****. What a ******* bummer. This is not what I wanted to hear. I don't want to have my breast removed - but what are the options? Live with it and hope for the best? Oh I'm sure I'll end up being brave and serene and probably becoming a committed activist for the cause of prevention but right now I FEEL REALLY PISSED OFF! I'm disappointed that they haven't apparently done more tests, like oestrogen receptors etc and I'm concerned that Mr M doesn't think it's worth doing other tests to see if the cancer has spread "beacuse they don't usually show anything".
Valerie, who is Alistair’s Reiki master, spoke to me on the phone and said a lot of interesting things yesterday. I'm sure that this will lead me in some new directions and it is interesting that Alistair is the starting point for my exploration into options. In a way it is part of bringing the circle, cycle, spiral, round again, connecting to that part of me which has spiritual strength and depth and all the arcane knowledge that has remained largely untapped over recent years. Now I need help, I need time for me, I need to focus on giving myself what I need. It's one thing to get wrecked and fill myself with drugs and alcohol - that is a temporary sort of oblivion and allows some relaxation but it doesn't get to the heart of it, it doesn't start to mend and heal. Perhaps I have to do this not just for me but for woman, like I have done the career bit. I need to find ways in which what I have learned over the last 12 years will feed back into the next part of the cycle, not just by bringing me the benefit of private health insurance.
I need to pull a support group around me. That group should include an oncologist. I feel that Mr M is reading from a script. I need to be treated as an individual - I am not a 'case', an object to be studied and have techniques applied to. He is only telling me a small part of the story - perhaps because that's all he can see?
I finished reading Beata Bishop's book last night - a wonderful story of her victory. Not having been told (in as many words) that I am incurable and have only 6 months to live, I am not sure that I can muster the strength of commitment to follow the Gerson therapy for a year or more, but it does make a lot of sense, in as much as the removal of toxins in the body and the provision of all the elements needed to enable the body to regenerate itself, create real health - it seems perfectly logical to me. The liver extract is the weird thing, especially now with the BSE crisis going on.
I have started to change my diet already. I have swapped cow's milk for soya milk and cut right back on other dairy products (cream, yoghourt, cheese) and eggs. Everything is organic if possible. I eat something fresh from the garden every day