Thursday, 28 August 2008

Dx Day +16

'Pandora' ~ John William Waterhouse

Time flies when you are having a ball; I wish. I have found time running mercilessly slow, and despite keeping myself busy with any number of jobs, I am finding that the surgery seems to be taking an awful long time to come around. I have been reading a lot too, despite my Breast Care Nurse (BCN) telling me to get off the Internet and put the books away. Having seen some of the claims made by some people, I can understand why she says that at this early stage of the treatment process, they can offer false hope to people in a vulnerable situation, and effectively try to capitalise on our ignorance and our desire for a cure, some are just frightening, and I don't think it helps at all to add to the stress of an already stressful time. I think in many cases she may be right about not reading too much beyond the stage you are at in your diagnosis and treatment, it is so easy to scare yourself witless in the process. It is easy to speculate and imagine that is you some months down the line, and before you know it, you are ordering your coffin and choosing hymns! Don't go there. Deal with today, and tomorrow, and the things you know to be true right now. I have tried to confine my information searches to what I know about my circumstance, although the temptation to read beyond is always there, a hope that you may catch a glimpse of the future or discover the panacea.

One of the reasons I read is I find the more I know and the better I understand what is happening to me, and what will be happening to me, I am then able to feel as if I am involved in the process of treatment, and rather than feeling overwhelmed, I understand the necessity for some things, and how and why they are done. It helps me to cope and feel more in control of what is happening to me. For example, I know I will have Radiotherapy sooner or later, and I have read about that in Terry Priestman's book 'Coping with Radiotherapy', which I found very useful. It helped disperse some of the arcane images I had about all things nuclear, although I have to admit to a tinge of disappointment when I discovered I won't have glow in the dark breasts! Another book that I have read and bought simply because the title appealed to me; ' 'I've Got Cancer, But it Hasn't Got Me'. These few words encapsulated perfectly the way I wish to deal with it too. The book was a warm , witty and informative account of the author, Kate Dooher's, own journey with BC whilst coping with the demands we all face; work, family, children and so on.

Other things that had mildly alarmed me included knowing that my breast would turn turquoise for several months, and that I would have tattoos. 'Miami Ink' sprang to mind, and I had some fun imagining several ink dots being being added to the freckles I already have and that I might be able to while away quieter moments playing dot-to-dot with me as the puzzle! Sadly, there are no artistic credentials attached to these marks, and they are there to ensure they line the machines up as accurately as possible, when undergoing radiotherapy treatment.

Another thing that really did have me worrying was the fact that I know I am going to have a 'wire' inserted to guide the surgeon when they do the Wide Local Excision to remove my lump. I understood half the process, having had Stereotactic Core Biopsy the second time around to confirm my diagnosis. This was a remarkable bit of technology, straight out of Star Wars. They take two images if your breast, and feed them into a computer (the images, not your breasts, although whilst they did this to me, I was firmly clamped in the mammogram machine). The computer software then creates a 3D image of the space your breast occupies, and shows the structures within it, so that the tumour itself can be accurately located and samples taken. I had imagined this wire would be along the lines of 'X marks the spot', that was a little naive, but having discussed this with my BCN, I am happier about what's involved.

Yesterday morning I spent an uneventful 4 hours wondering from one department to another at the Hospital on the pretext of Pre-Op checks. The British Army might consider it useful as an orienteering course, I walked miles and got lost once! They seemed very through in their tests, and I was asked to provide urine and blood, and was also sent for an ECG and chest Xrays. I found this reassuring in a bizarre way. At least they would know how to put me back together.

Before I went for all the Pre-Op checks, I had arranged to see my BCN, as I had emailed her last week with a vast list of questions about various aspects of the treatment. I have found this side of it all so refreshing; the ability to be able to phone, or email someone who is throughly clued up about my case and the disease, who is there for me as a fountain of information when I am unsure. It's all highly civilised at the hospital I am at, and we went of to a quiet room complete with sofas and fresh flowers, armed with coffee in proper china mugs, and my gargantuan list. She talked me through each of the questions I had asked, and we discussed some non-medical stuff too which I had found difficult. It's amazing how people react to you when they learn you have cancer. In some instances it may as well have been the plague. But you soon learn who your true friends are, and after the first couple of shocks about peoples reactions, you mentally switch off to that kind of negativity. I decided I wasn't going to allow the hurt I felt at their reactions turn into negativity or depression. I have decided I have enough to deal with without having to deal with other peoples emotional cowardice or ineptitude.

I also contacted the Breast Cancer Care Charity, who are the is the UK's leading provider of information, practical assistance and emotional support for anyone affected by Breast Cancer (BC). I talked to a lady who was skilled in the art of discussing all the questions and issues I wanted to raise, without feeling I was adding to the burden of those around me. She was amazing, and suggested a number of practical solutions to things that had been bothering me, including sending me information to read about specific aspects of the disease, and also suggested that I might benefit from a 'Peer' to support me on the phone from time to time. Some one who had been through BC themselves, and was now a trained counsellor. Someone who was able to empathise and be realistic. This Angel phoned me last night, and we talked for quite a while. She is 10 years past her diagnosis, and had a very similar set of circumstances to my own. Knowing she was there, and life carried on as normal 10 years on, and that her kids got through Uni, and her husband was still by her side, gave me huge hope, and helped me put aside some of my less rational fears. She's going to call me again next week after the surgery, and we can talk again then; waiting for the full diagnosis is difficult, and I wont know the full story until a week later, but shes been there too, so understood my worries, and is willing support me along my journey. How amazing is that? My own personal Angel!

I think the most difficult thing I have had to do in the past two weeks however is find a Bra that is suitable to wear after the surgery, I actually ended up reassuring two quite upset fitters in one of the flagship Marks and Sparks yesterday afternoon as they desperately tried to help me find something that would fit! I had ordered some from the Internet, but they are a bit lacking in the cup department, and I had visions of waking up with my boobs poking out my back! Last night I discovered some monstrosities on and have ordered a couple that may fit at the outrageous price of £46 each! Let's hope they turn up in time. I have to say it's the practical issues like these, that drive me close to tears; sheer frustration at not being able to do something that should be so simple.

Anyway, huge ramble; sorry about that, but I thought I had better let people know what I was up to and how I was fairing.