My experience with breast cancer - part two

Posted on: 17 October 2011 by Carole Edrich

Carole Edrich on the challenges of facing breast cancer and fighting for your right to the best care and advice possible.

breast cancerI told myself taking a lover wouldn’t be a problem. After all, his sister had survived cancer so he wasn’t going to treat me like an invalid. However, in bed, when it counted the most, the knowledge that one breast was too large, too round, too central and far too high was not something I could ignore. It showed and I don’t think he knew how to handle it either. We only got together once, scant days before the operation scheduled to put it right. Or, so I thought.

What happened (more accurately, what didn’t happen) between me and the lover after that awful night made me seek reassurance that the plastic surgeon would try to right the deformity I hated so much. A combination of stresses: the fear that staying overnight in a ward among people with whom I had nothing in common might bring back my tsunami-related post-traumatic stress and the fear that, because of what my consultant had repeatedly alluded to, that he wouldn’t even try to even out my bust.

I called his secretary and explained how concerned I was. A few days later, when she had managed to talk to him we spoke again. She told me he thought it would be better if I cancelled the surgery and found someone else. I hadn’t presented him with anything new; he had known my misery with the situation right from the start. He gave no explanation and although I asked for a referral at the time, the fact that he had broken my confidence in so many ways meant that I was never able to trust his recommendation.

Rather than trawl the internet, I asked the opinion of my friends. Five names were given by different people and knowing that I was far too upset to make a sensible decision, I asked my brother to decide who was best. Eventually a referral from my GP resulted in an appointment nine months after the end of chemo.

What a breath of fresh air! Though with good news came bad in equal measures. Despite assurances from friends in the know, it’s wonderful to know for sure that there was light at the end of the tunnel and my fears over being stuck with a disfigured breast unfounded (I thought this might have been the reason why my last surgeon had explained nothing).

I was told that, while my current breast has ‘served a purpose’ the new plastic surgeon accepted that it unacceptable in the longer term. He told me that my breast could ‘definitely be improved’ and moreover described several other ways that both position and appearance could be made more acceptable, suggesting that a less drastic form of surgery be tried to start with and, if that didn’t happen, after two years we could discuss whether to go with other options.

That referral, however, didn’t mean that I was able to book an operation. I don’t know exactly why, as I had also been trying to change oncologist too and followed exactly what Macmillan told me to do, but the pain wasn’t over. Despite being assured that the transfer and operation wouldn’t take months (I was in tears at the idea that it would) it’s now 13 months later, a year since I finished chemotherapy and I’m still waiting. I really hope I don’t have to wait much longer, because words can’t describe how difficult it is to live with the way I am now.

Of course, I’m grateful that the NHS has saved my life. But surely, that’s no reason to settle for less than I need. I feel as if the NHS machine is trying to cow me into accepting less than I deserve. It is irrelevant whether this has been done by accident or design, whether it’s the weight of bureaucracy, poorly designed processes, politics or a result of the wrong sort of corner cutting. Of course, I’m feeling horribly vulnerable. Of course, sometimes, when my blood sugar’s low, I get depressed and, of course, I’m still not dating. Any woman in my position would be the same!

It’s hard enough to sleep or have a normal social life, as I slowly recover from the chemo-induced chemical menopause. It’s hard enough to draw from an already depleted body the energy and inclination to get up and go to the gym - ignoring my body’s pleas to spend the rest of the day in bed. I didn’t sign up for cancer, and I feel mislead about how long it would take to recover. I accept that it’s part of the deal, however, this disfigurement, this way I look that makes me want to hide away and keeps me single should have been fixed long ago.

Benefit from my experience:

In retrospect, it seems that, given the choice, current NHS hospital practice is to accept a referral as a request for a one-off consultation rather than a change in hospitals. If this isn’t what you want, talk to your GP to make sure that he words the referral letter carefully and keep on their case.

Theoretically, the NHS gives everyone a choice as to where one wishes to be treated. Expect bureaucratic barriers and don’t rely on the spoken word. Back up your spoken requests with writing and make sure it’s to the correct consultant and hospital.

If you must have an  urgent operation go ahead, don’t delay it. However, don’t let anyone crowd you into the decision as to which consultant or surgeon to go with. If you’re as upset as I was, get a friend or other trusted advisor to help. I’ve been assured many times that the NHS gives me the right to choose my surgeon and my hospital for cancer treatment. The same will be true for you.

If you’re not comfortable with what a consultant says, get a second opinion. In the UK that’s your right too. If you have a life-threatening condition like cancer, it’s up to the medical people helping you to make sure you get that opinion within an acceptable time. Make sure they know that you know it. Put it in writing if you’re not sure they’ve listened.

Ask questions. What you don’t know is always going to worry you. You’ll have enough real stuff to contend with without dealing with that. If you don’t feel able to ask the questions yourself, do it in writing, get a friend, or trusted advisor to ask them for you.

Find someone to talk to. It doesn’t matter who or where you go, so long as you can trust the person or people you choose; friends, telephone helplines, facebook, special chatrooms, hospices can all provide support.  

Be realistic. It takes time to recover from the trauma of a major operation, from chemotherapy and from radiotherapy. Don’t lose sight of your goals, but accept that life is going to be frustrating for longer than you expect.

Don’t accept second best. What’s the point in surviving cancer and living through months of hellish chemotherapy if you’re going to let people dictate a lesser quality of life than you’d be willing to accept?

Lots of other people have had cancer. One in three in the UK has cancer at some point of their life. So there’s absolutely no reason to feel alone.

The last word

I don’t believe that all NHS surgeons are this insensitive or that all NHS surgeons mismanage their patients’ expectations to the same extent that this one did. I’ve often wondered if some people assume that the intelligence, articulacy and self possession with which I normally behave means that I am less sensitive or more resilient than others. It might even be that they respond as if this is true without conscious thought. It’s possible that the surgeon who treated me is more sensitive to the majority of women he deals with. then again, it’s possible that most of the people he sees have been so cowed by the idea of cancer that they’ll accept anything out of gratitude for his part in saving their lives. I believe passionately that this shouldn’t happen, but that’s a story for another day.

October is breast cancer awareness month for more information about the condition visit Breast Cancer Care.

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