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.


Julia said...

Thank you for giving us the update. I've been there with doing too much reading on the internet, both for illnesses I've had an illnesses of relatives - it's the worst thing you can do, but it's so compelling. There's a deep yearning to know that we are not alone in our struggles, that someone has been there before us and come out the other side. And when everyone around you can only imagine what you're going through, you want to have a connection to someone who knows what it's like.

On a more practical note, I'm not sure what your requirements will be bra-wise post-surgery, but I'm guessing support, no wires, soft-cup, possibly even sports bra-type? If you're a D or above (or even wearing a C) I can't recommend Bravissimo highly enough. If there's one nearby, a fitting will be much less stressful than M&S, and they're geared up for all sorts of situations that need to be accommodated.

Failing which, I understand their phone operatives have been trained to fit over the phone. So they'd get you to check how your bra looks and feels, and then suggest which size you'll need, and they'll take into account the surgery.

Bravissimo bras aren't cheap, but they're cheaper than £46 each!

HappyMouffetard said...

Your Angel sounds wonderful. I know that some people can find it hard to relate normally to someone with cancer, but you will have your true friends. Make sure you use them, even if it's just getting them to make you a cup of tea when you're feeling tired, or doing some ironing for you!

Frances said...

Hello to you, Zoe.

You write so well! Everything that you have expressed or explained in this post will be so very helpful to others.

It's particularly wonderful that you have connected with your Angel.

Along those lines, I wanted to let you know that our company has a semi-annual special event coming up next month. We chose a philanthropy to which we will donate 10% of our "take" for the day. All of the NYC store managers gathered together a few months ago to hear representatives from several organizations make their applications to be the designated philanthropy.

The organization that we chose is called Share. It's made up of cancer (mainly breast cancer) survivors who are put in contact with folks, as your Angel was put in contact with you.

We are very motivated at our shop to have an exceptional day, and want to make a big contribution to this wonderful group that helps women to help women.

As always, hugs and kisses to you!

mountainear said...

Hi Zoë,

Thanks for the update - not so much a ramble, more a guided tour with points of interest along the way. Don't apologise.

I think, like you I would want to read around the subject and understand as much as I could. This is where an overactive imagination is not an advantage.

Glad you are getting good support from both your BCN and 'Angel'
- they will be worth their weight in gold.

Warm wishes, Felicity

Jean Bradbury said...

My dear Zoe, thank you for the update. I feel a little more like I am there with you, though wish that I could pop in for a real visit and a hug.

snailbeachshepherdess said...

Hi Zoe,
When this is all done and you are out the other side I can see you taking on one of those 'Angel' roles...

Withy Brook said...

Dear Zoë - thank you for walking us through what you have felt and done since your last post. You write in such a matter-of-fact and positive manner, that it must help others who are in the same situation.
As for the internet, it would surprise me if you didn't read everything you can find because it is so much part of how you work - but I can see that you would get more information than you need/are ready for.
God bless the Angel and the BCC. It must be such an enormous help. One of the problems for the people who don't know what to say and cross the road (as happens to the bereaved too) is that they have no experience to help them. I too can see you taking on the Angel position, when it is over and you are 10 years on.
You remain in my thoughts and prayers.

Magic Cochin said...

I feel glad that you have found an Angel to hold your hand through the treatment. I would also want to find lots of information, but there is also a point when it's best to just put all the info to one side and be aware of 'you' and how 'you' are feeling today.

A big hug from me

Faith said...

Very interesting post Zoe, and glad that you are taking such a positive attitude, but we knew you would. My aunt had BC as a young woman, had breast removed, and lived to 95 and this was ages ago - 50 years prob - and before all the amazing treatment, help and support there is nowadays. Thinking of you.

ChrisH said...

All the very best with the surgery and wishing you a swift recovery.

Pondside said...

Hi Zoe - so interesting to read about your approach - we are much alike in that way. I had to laugh at your bra experience and the monstrosities that you've bought - some things just have to make you laugh, don't they? I don't know if you do this in the UK, but over here rowing is very popular and nearly all the women that I know that have had breast cancer row on a team called Island Breast Strokers. You have their kind of spirit. So......keep yours (spirit!) up and know that we're all with you on this trip.

CAMILLA said...

Hello Zoe,

Hold onto that Angel, she will help through on your road to recovery.

Best of luck with the operation Zoe, take comfort in knowing that we are here for you.

Sending you all my love and hugs.

Love Camilla.xx

WesterWitch/Headmistress said...

Hi Zoë

Thinking of you and will be tomorrow.

As for the info - as you are finding out and as with any disease there are garage loads of it - some scary, some rubbish and some very helpful. You are one extraordinarily clued up person and you will know how to sift through it and take what is useful and discard what isn't. The BCN are often amazing as are the people they can put you in touch with. But your experience is still your experience and although others will be similar none will be yours and none will have your feelings attached.

Love and Hugs and loads of Purple Vibes to you . . . I don't pray in the conventional sense, but I will be thinking of you and everything being sent to you is positive and healing.

Fern said...

Lovely to hear you are staying positive and feeling in control of the situation.
I think you are wise to try not to get too far ahead with your research on the web, some of it can be out of date anyway.Best wishes

Angel said...

You sound like you are doing amazingly well Zoe.

Keep 'rambling' if it helps and be assured there are a lot of people who care about you and want to try and support you. Keep strong and mostly keep fighting.

best wishes

elizabethm said...

This sparks so many memories for me Zoe. I too read all sorts of stuff and was terrified to discover that the five year survival rate for my cancer at the stage it was assessed to be was 35%Turned out to be an extremely rare alternative which was not quite as dreadful a prognosis so it is wise to take things a step at a time.
I know just what you mean about talking to someone who has been there and so glad you found your angel to be someone you could easily connect to. I am sure she will be a huge help to you.

Grouse said...

It doesnt suprise me at all that you take such a thoroughly technical approach to this: it is how you approach every subject and I think its an excellent way to get your head round what is happening.

And many of us are totally inept when dealing with these things, but I hope that doesnt blind you from the sincerity of the thoughts.