Thursday, 7 January 2010

Can’t buy me love ... or trust ...

To be trusted is a greater compliment than to be loved.
George MacDonald

So how’s it going?”

Totally crap”.

Yes, it is that time again. The third week. Bloods with my GP on the Tuesday, to check that all is OK to have the chemo on the Thursday. I had to wait, as always, ‘cos my doctor runs this “open surgery” thing where you turn up without an appointment and wait to be seen. I didn’t mind too much this week as I am still feeling quite upbeat and OK. I sat in my favourite seat in the corner and rummaged through the magazines. Ooh, Psychologies, I like that one. I got nice and comfy and started browsing through it. I read a couple of articles and became puzzled ... when was this published? I flicked back to the front page to check ... mmm .... August 2005. Now, I know we are pretty laid back in Funky Town ... but a four year old magazine?! I continued reading it and an article lit up as I turned the pages. The title was something along lines of “I was told I had cancer ... then heard even more shocking news.” Of course, I was glued ... oh God if they call me now I am going to have to put the magazine in my bag ... I know that is a bit naughty but it has been there for four years ... surely anyone who has wanted to read it has done so by now ... 

So, what could be worse than being told that you have cancer? Now, when I was diagnosed I did think back to a friend and colleague who I worked with many years ago. Her son was about to go on holiday to France with his grandparents, but a day or so before he complained of tummy ache ... which got worse and worse ... so she took him to the doctors. It turned out that at the age of about 7 or 8 he had a cancerous tumour. But thankfully he hadn't gone to France and it had been caught just in time. And I thought about this, and although I didn’t want to have cancer, obviously, at least I could console myself that it was me and not one of my children. Me, who was bigger, stronger ... someone who had had 41 years to live a life ... do the things that I wanted to do ... though whether I had actually done them all was another matter ...

Not good then? So what has been happening?” asked Dr C. So I told him about my side effects. The fact that I get two waves. The first with the “normal” side effects ... the achy joints and pains and the cardboard mouth ... and then the second wave with the swollen throat, loss of voice, the hive-y rash. “I know I like to feel special, but on this occasion I could really pass it up”, I said. “I’ll prescribe you some cream and anti-histamine. I think that might help”, he replied.

As he took my bloods I said: “I don’t want you to take this personally but I won’t miss my little visits to see you.” He chuckled softly and said “I don’t want you to take this personally, but I won’t miss seeing you either.” We laughed.

I stepped out of the surgery and did something that I have done previously ... back in the autumn ...I walked ... Forest Gump style. And ... I did as I did before ... I strolled through the town ... out to the railway station ... along the cycle path ... to Dartington ... and up to the Gardens. One of my favourite places. It was different this time, on the first occasion it had been warmer, the canoeists were on the river, the trees were dropping their amber and yellow leaves ... and when I arrived at my resting spot, the bench on the Sunny Border, I removed my coat and I sipped my bottle of water and enjoyed the sun warming my face. This time it was cold and icy ... though the sun was still shining ... a beautiful winter’s day.

As I walked I thought about the article that I read in the magazine whilst I waiting to see my GP. It was about a woman who had worked as a presenter for Channel 4.  Some years ago, whilst she was still in her 30s, she had found a lump in her breast. She had been told that “it probably isn’t suspicious” – well a few of us have heard that – but like me nobody was complacent and she was sent for further checks. She went on to be told that in fact it was “suspicious” and that it was indeed malignant. Initially she had a lumpectomy, breast conserving surgery where only the lump is removed, but was later told that the cancer was more prolific than they had previously believed and that it had spread to the other breast too. So she returned to the operating theatre where she had a double mastectomy – in other words she had both of her breasts removed. This was followed by chemotherapy and radiotherapy ... no walk in the park by any means.

Following her treatment she and her husband made the decision to move house to be closer to his parents, so if she should become ill again would be someone on hand to support her physically and mentally. Though this decision meant her giving up her job. She was also told that her cancer was hormone driven so she should not become pregnant again as this would massively increase the chance of the cancer returning.

However, one of the cruellest things about cancer is the fact that once you have it, it lives with you forever. It never totally goes away – it is always in the back your mind that it will return, or reappear somewhere else. People talk about those who have suffered from cancer being given the "all clear" ... but there is no such thing.  You can be tested ... mammograms, MRIs, ultrasounds ... and the results are only relevant for the day that you are assessed.  For that day only. There is no guarantee that tomorrow ... next week  ... next year ... that it won't reappear.  And that is what she talked about ... the fear ... as many do ... the worry that every ache or pain could be a sign of a new tumour ... that it is back. So, what was the twist? What could be worse than being told you have cancer?

Well ... some years on she had been for some routine check ups ... and then called back to the hospital to hear the results. She described how she walked into the room and came face to face with “lots of important people”. Consultants and managers. Her heart dropped ... it must be very bad news ... they must have found something terrible. But they hadn’t. She was in fact told she had did not have cancer... and that she never had. That the locum that she had seen had been investigated for misconduct and that she, and a number of other women, had been misdiagnosed.

She described her immediate reaction and the feelings that followed in the days after. She talked about the fact that she wanted to feel pleased, that she knew that thousands of women who have, or have had suffered, from breast cancer would be elated to receive such news. And of course she was pleased in some ways ... but felt bitter about having to go through the physical and mental gruel of treatment, and the aftermath. The removal of her breasts, giving up her job, the constant worry that it might return. She didn’t talk about compensation but I am sure that there would have been some. Maybe, running to 5, probably 6 figures. Enough to pay for some beautiful new cosmetic breasts ... but of course, money doesn’t buy everything. She went on to have the little girl that she had always wanted, but grieved that she couldn’t breastfeed her daughter as she had her sons.

As I stood and admired the tranquil view - the river with the delicate cold mist hovering over its surface – I wondered how I would feel if was to be told such news. If I was called to the hospital and told that there had been a mistake ... that I don’t and have never had cancer. There would be no doubt that I would be pretty cheesed off.  Robbed of several months ... or even years ... of a normal life ... having to endure the chemo and the painful side effects, surgery which could never be reversed. But to have this shadow ... the permanent shadow that I will have to endure for the rest of my life ... the threat of cancer returning to my body to be magically erased .... money can’t buy everything ....

As I got up to put my coat on Dr C said “I see from your notes that Dr O says he saw you before Christmas and is really pleased with the apparent impact the chemo has had on your tumour.” I nodded, “Yes, so much so he is talking about cancelling the final treatment". “That would be brilliant”, he said. “Yeah, it all sounds pretty positive, except they are still talking about a mastectomy, when I had my hopes on a lumpectomy.” He was surprised and shocked. “That is a blow. I thought the whole point of neo-adjuvant surgery was so you could have breast conserving surgery”. I went on to explain what Dr O had said to me. That the priority was to get rid of the lump ... that chemo, surgery and rads are all I have available to me. That in the long term there are no meds for me to fall back on.

At the end of the day I know that Dr O and Dr Jordan are going to recommend what is clinically best for me. They are not going to do surgery which is not necessary. More drastic surgery is additional time and expense with greater chance of complications and long-term care. Minimal surgery is better for them as well as me. If they can do a lumpectomy then they will ... if my longer term prospects are better if they do a mastectomy then they will recommend that ... and I will go with what they say ... I trust them.”

I pulled my coat off the back of the chair and put it on. As I turned back to say goodbye to Dr C I closed the conversation by explaining: “I just have to accept that I have to patiently sit and wait to hear what is the best way to go forward ... my life ... and my boobs ... are in their hands ....”

As I opened the door and left the consulting room I heard Dr C let out a loud hearty guffaw.  I know that he wants me back on the road to recovery too - which is why he made the comment about how he will be pleased not to see me - but I am pretty sure he is going to miss my little visits.


  1. Very thought provoking.... I imagine we all feel the same way, and as you can see I couldn't wait for you to put a link on the Mac site! OMG, I'm sounding like some crazy stalker now!!

    Marsha x

  2. Sending you lots of hugs. I love reading your blog Paula

  3. Gosh. That is a shocking story.


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