One year on but who's counting?

At this time, exactly a year ago, I was supine on a hospital trolley having a surreal conversation with an anaesthetist about his hermaphrodite dog. (I still don't know whether he tells all his patients that one . . . but it made me laugh.)

So, yes, a year ago, the Massive Inconvenience (or a very small Grade 2 oestrogen-receptor positive tumour) was about to be removed from my left breast. (I thought a bit of context would help if you've just started reading this blog or have arrived here by cyber-chance.)

To say I've learned a great deal in the past twelve months would be something of an understatement. The most positive aspect is that I know myself a good deal better than when I embarked on this journey - and that has been a gift. 

Another thing I have learned is that the two most common bedfellows of cancer - or, more precisely, a cancer diagnosis - are anger and fear. It was something I recognised at an intuitive level very early on and, having recognised them for what they were, decided to do my very best to kick them out of bed - permanently. I knew, beyond any shadow of doubt, that anger and fear had no place on my journey to recovery, despite the fact that many aspects of cancer treatment seem guaranteed to stoke up the fires of uncertainty. One has only to visit some of the breast cancer online forums to see how true this is; while some members are empathetic and supportive of each, others are almost screaming with rage at anyone who dares to question any element of the various standard treatments. But we are all individual and the downside of the 'one size fits all' approach is that . . . it doesn't.

Keeping myself focused on recovery and keeping anger and fear at arm's length enabled me to make informed decisions about my own treatment. Looking back over the year, I feel even more strongly that those decisions were right then and they continue to be so.

Theroretically, I should have been trotting along for my first annual follow-up visit about now but, by last week, I had heard nothing from the centre at hospital where I was treated. So I telephoned and asked to speak to one of the breast care nurses. They were all busy. And according to the young male administrator I spoke to, the centre is weeks behind with appointments 'because of building works'; nevertheless, he offered to make an appointment for me with my surgeon there and then. However, when I told him the name of my surgeon, I was told that he is away for personal reasons (date of return unknown); meanwhile, the surgeon who is covering for him is booked up for weeks ahead and is then on study leave, followed by annual leave . . .

The young male administrator eventually offered me an appointment in November, adding that he thinks that's OK because 'after all, it's just a follow-up, isn't it?'

Well, that's one way of looking at it and, in one way, he's right because I have no reason to feel fearful. But that might not be the case for everyone, especially for patients who have been treated for a more advanced or more aggressive form of breast cancer. I said that I thought some of them might be getting anxious if they hadn't heard and anxiety is not conducive to recovery.  Wouldn't it be a good idea, I suggested, to let patients know that there is currently a delay in follow-up appointments?

'Oh we've got hundreds of patients,' he replied, 'we couldn't possibly ring them all.'

'What about a standard letter, just explaining the situation, and urging anyone who is concerned to ring the centre?'

'Oh, right, mmm, I see what you mean.'

I'm not absolutely sure that he did and I doubt that patients will receive any sort of holding communication any time soon. And who knows how long I might have waited for that appointment, had I not picked up the phone?

Which brings me to the other things I've learned; first, that we are all much greater than the sum of our symptoms and, second, that we have to take ownership of our disease and its treatment. We need to ask questions and, above all, we deserve honest answers. We may all be wearing identical hospital gowns but that's where the similarity ends.

But enough of the philosophising; let us have some music to mark the day. Time, I think, for a small celebration.

Comments

[Eunice from PEI, Canada]

I guess I am what is called a lurker. I enjoy your blog but often don't comment. I really enjoy your post today as, like you, I had a lumpectomy done almost 2 yrs ago, More recently, I had a cancer recurrence in the lymph node near my right collarbone and am undergoing chemotherapy. Having said this, your attitude towards cancer is very much like mine.... a positive one is so essential to deal with anger and fear. You are so right in being proactive about your health. I will think of you as I continue to read your blog.
Take care from a reader in Canada :)

[60 Going On 16]

Hello Eunice: I cherish all my readers equally, whether they comment or not (I'm a lurker on a good many blogs myself . . ) But I am always pleased to hear from someone who is walking the same or a similar pathway, not least because we have shared experiences and that, in itself, can take away the sense of aloneness that the cancer journey can sometimes engender. I was so sorry to hear that those pesky cancer cells had had another go at you but, if it helps, the surgeon and the breast care nurse who were with me when I received my diagnosis and who witnessed my response told me that they were in no doubt as to the enormous
contribution that a positive attitude can make to recovery. So I will think of you as you go forward with this stage of your treatment and I am sure that other readers will think of you too. Please keep in touch (on blog or off) and let me know how things go for you.

[Pamela (Lady Luz)]

A very helpful post, D, which gets to the heart of what stands in the way of all life-threatening illnesses. That kind of clear-sightedness about anger and fear stands a person in good stead when dealing with other life's problems, I think.

I'm not surprised about the lack of communication about back-log problems at the hospital. Writing a letter doesn't seem to occur to many people any more in this digital age.

[wendy robertson]

You touch a deep chord in so many people who cheer you on and cheer others through you. Liike Eunice I read anf digest but do not commnent too much because most often I think you say it all. wxx

[Amy]

Facing uncertainty is very frustrating... Your positive attitude will definitely make the treatment go smoothly. Thank you for sharing what you've learned.
"I can see all clearly now" is a great song!

[Lisa Stowe]

I hope you sense the big hug I'm sending your way. One year 'free' is a big milestone. It bothers me that the person you spoke with appeared to take a 'follow-up' so lightly. I just passed my two-year milestone, and the oncologist told me I could relax 'a little'. Of course he also wrote me a prescription to do something for myself in celebration. I hope you did, in spite of the stress of having to wait for the follow-up.