Frequently asked questions

Some people have asked for more detail on procedures, prognosis and current condition, so I’ve done a sort of Q&A here. Skip this bit if you don’t like this sort of detail.

What did they actually do to you?
They removed all the breast tissue (mascectomy), took a muscle out of my back, threaded the muscle tissue round under the skin to fill in the breast, leaving the outer breast skin. Later they will construct a nipple if I want them to. The new tissue comes with its own blood supply and nerve endings. This was a complicated operation involving disconnecting and reconnecting blood vessels etc. Probably why it took six hours. They also sampled some lymph glands under my arm to see if the cancer has spread. They inject a green dye which shows which lymph glands connect to the tumour area so they know which ones to sample. This dye makes bodily fluids go green for a few days (hence the green wee!). There is a one per cent chance of the body rejecting the new breast within the first 24 hours after surgery, after that, the tissue will ‘take’.

Are you in much pain?
I’ve got a back wound and a front wound. The back wound stings a bit especially when leaning back on things. Occasionally I get twinges in the new breast but mostly it feels numb. I have a stinging sensation under my arm where they took lymph nodes. I am having odd sensations in my back where they took the muscle out, but these aren’t painful. These are just the other muscles and nerve endings wondering what the hell’s going on. Pain is a subjective experience and everyone is different. I would say the pain is about equal to when I broke my collar-bone and considerably less than when I had meningitis.

How’s the back orgasm?
Still getting this – and it can happen at random whenever I lean my back on something – which means you can’t really take me out in public at the moment as it makes me squeal! It’s a series of involuntary muscle spasms which is actually more pleasurable than painful, if a little alarming. Sometimes it feels like there is a hidden hand just below the surface of the skin tickling me. My lay-person’s explanation is that these nerves must hook up to pleasure receptors in the brain (similar mechanism to orgasm), rather than pain sensors. The nurse said this over-sensitivity is common but my reaction seems to be ‘extreme’

Isn’t that weird?
Yes, proper weird.

What happens next?
They go away and analyse the tumour and the lymph. The tumour is the black box which will tell them all they need to know about the cancer. I go back in three weeks to learn what the damage is and get a treatment plan.

So what’s the prognosis?
I went for the full mastectomy rather than lumpectomy to give myself the best chance of getting rid of the cancer with no recurrence. The MRI scan indicated the cancer had not spread beyond the tumour area and was not in the other breast. Mine is a hormone-fed cancer which I understand is less invasive than other types, but I will learn more when they’ve analysed the black box. There will be some follow-up treatment, but I don’t know what yet. I am hoping to avoid any nasty chemo type drugs.

What’s the recovery time?
Minimum six weeks recovery from the op itself. Can take up to three months. The fitter you are when you go for surgery the quicker the recovery. I was fit when I went in.

Will the reconstruction actually look like a normal breast?
I think so. My surgeon was the brilliant Miss Bello. She is both an oncologist and a plastic surgeon and is, I’m told’, a perfectionist. My friend Jane had the same op four performed by Miss Bellow four years ago and I had a look at hers. It looks and feels like a normal breast. Apart from a small scar you wouldn’t know it had even been operated on.

What about scarring?
I’ve got a horizontal scar across my back but it’s quite low so I will be able to wear reasonably low backed tops. There’s an oval-shaped scar on the breast which will fade with time.

How did you discover the cancer?
Found a lump one day. Wasn’t sure it was even a lump as I didn’t really know what I was looking for. The doc got me into the breast clinic within two weeks (thanks Gordon!). From diagnosis to operation was less than four weeks. The lump was 2.8 cm in diameter.

What are you able to do now?
I can walk around the house and garden and to the end of the road. I can bath and shower myself. (The dressings are shower-proof). I can make cups of tea and fix myself snacks. My right arm has limited mobility but I am doing exercises like arm raises and finger-walking up the wall to bring the movement back. I am still resting quite a lot but my energy levels and mood are good.

Have/will you make any lifestyle changes as a result of the cancer?
Yes, we've got a cleaner! I may look at diet etc but will examine the evidence first rather than listening to quack-science.

How do you cope?
I am coping well because I have excellent support. My husband, friends and colleagues are wonderful. It’s so important. Even if people aren’t physically anywhere near it gives a tremendous boost to know they are wishing you well. I really pity anyone who has to go through this alone. There have been some very bleak moments but they are few, and short-lived. I have faith, and believe I have been given a transcendental grace to deal with this. I have had people of many denominations praying for me – from RC to Sikh – which is supremely comforting.

Did JP get you a bell?
Yes, he got me a lovely bell off ebay, see pic.