Friday 30 April 2010

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.

Thursday 29 April 2010

Home


JP stuck a note on the windscreen yesterday which said: "Picking up my wife from Gillies ward. Hooray!" then gave me a homecoming full of flowers and treats.

How wonderful to be home, to a garden full of colour, my gorgeous husband, and earl grey tea.

Wednesday 28 April 2010

Release

"I see my light come shining, from the west down to the east, any day now, any way now, I shall be released." Bob Dylan.
Doc's done his rounds, says I can go! Waiting for my release papers.
Have been a bit blogaholic today. Feel euphoric, and this time nothing to do with morphine as have not touched the stuff for days. This is pure endorphin.
Thank you, Nottingham City Hospital, for my excellent care.

It's an ill wind ..

I've got something called fasciculation in my back which is a series of involuntary muscle contractions caused by reaction to post-op muscle stress. Not dangerous but it feels like having an intense orgasm in your back. How lucky am I??!!!

City accommodation review

Room: en suite. Sunny outlook. Overlooks oncology roof-terrace. Well proportioned. I've stayed in worse hotels. No air-con.
Cuisine: basic but edible. Meals served a little early.
Staff: superb. Can't do enough for you. Room service includes counselling and opiates on demand.
Entertainment: cricket, archery, and theatre on site. No wi-fi. Don't bother with the TV package. It's a rip-off. There's a wide screen telly in the lounge for use by guests.
CWS (check out date: Wednesday 28 April.)

Tuesday 27 April 2010

Get me out of here!

They won't let me out because the bloody drains are still draining, and nothing I can do can speed them up. This morning I was climbing the walls so much I almost asked my boss to send me work. Visiting hours brought some lovely people to divert me. But now it's 2am and I CAN'T SLEEP

Monday 26 April 2010

Appeal - exercise bike

Anyone got an exercise bike I could borrow for a few weeks while I'm convalescing? Likely to be going home today or tomorrow and might find it useful. We can collect. NB does not apply to followers in Houston or Hong Kong!Thank you.

Btw some people are apparently still not able to post comments. If you use the anonymous option you should be able to do so. Cx

Sunday 25 April 2010

City Theatre Review

"I'm Andy and I've come to take you to the theatre" says a man in a green top.  My husband comes too, as far as he is allowed, then Andy whisks me away.  He wheels me into a room full of beautiful people who introduce themselves one by one and tell me what they do.  I feel like I'm at the Medics Ball.

They also ask me about myself. How old am I, do I have my own teeth, and have I got any piercings?

Then one of the men says "I'm going to give you this.  It's like three sherries."

I go dizzy and sleep through the rest of the show.  I am in theatre for six hours.

In the days that follow, people keep saying: "I was at your operation."

It seems the whole world was there.  Must have been quite a party.

Saturday 24 April 2010

Things hospital staff say

"Have you got your sexy stockings on and your knickers off?" (Man who wheeled me into theatre)
"Oooh look - green wee!" (Nurse)
"We need to get you exercising!" (Physio on day one, when I was attached to fluid drip, morphine pump, catheter, oxygen masc and four drains)

Friday 23 April 2010

news from the City

At last can blog from hospital. The operation was a 'success' even though I now feel like I've been run over by a bus. More morphine please!

Tuesday 20 April 2010

Loo review

Certain people have been extolling the virtues of Leicester so JP took me there yesterday after the pre-op to get my mind off things. We tried to go to the Space Centre but it's shut on Mondays so instead we went to the museum next door which is all about sewage. There's a display of toilets through the ages. I was rather taken with this one.

The strangest toilet I ever saw was in France in the 80s. It was one of those contintental loos with foot pads but it doubled up as a shower. Equally strange is the one in my cousin's garden which doubles up as a composter. I guess I am about to enter a world of bed-pans and catheterisation - nice. Taking blackberry with me so can blog on morphine...

Reasons to be fearful

Hello new followers and thanks for all your positive thoughts, prayers and messages of support.

Just been to see the surgeon who scared the hell out of me by listing all the things that could possibly go wrong. But as JP says, if a pilot told you everything that could go wrong before take-off everyone would get off the plane.

People have asked what I am scared of. Ultimately it boils down to two things (both very unlikely):
  1. Fear of waking up in the middle of the operation
  2. Fear of not waking up at the end.
So it's fear of fear and fear of death.

The scary thing about death is you go there alone, and although many people have gone before you they're not in a position to tell you what it's like.

That said, I feel propelled by a surge of good will which makes a power of difference in over-riding fear.

Monday 19 April 2010

Things consultants say

"You've limited your options by not putting down enough fat deposits"

"The problem is, where you've put it [the tumour]."

"If you were a 42 double-D, it wouldn't make much difference"

Said to a friend on discovering she had cancer for a 4th time..
"Well, we're all heading in the same direction.."

Sunday 18 April 2010

"God help you in the hands of the medical profession"

A quote from Rob's Dad, who used to be a doctor. Rob says, people who see it from the inside realise medics are not 'infallible priests of science'.

Personally, I trust both (God and the medical profession) to get me through this, just as 20 years ago, they cured me of meningitis.

This week I become the property of the NHS. It goes like this:
Monday: Pre-op - to make sure I'm fit.
Tuesday: Consent to surgery (if you don't consent it's assault and battery). The surgeon may want to draw on me, apparently. She is, after all, an artist.
Wednesday: The operation. I'm looking forward to the morphine.

Saved by the bell

My husband is going to buy me a bell for when I come out of hospital, so I can summon him when I need things. I wonder what sort of bell he will get. I fancy a big old-fashioned school bell like this one, or a gong. .                                                                                              

Friday 16 April 2010

The weather

My moods have everything to do with the weather and almost nothing to do with cancer.
Yesterday an impenetrable volcanic gloom hung over everything - like some weird nuclear winter.
Today the sun has broken through and I'm feeling chippa.
Perhaps we'll get out on the boat this weekend. Boating is the best therapy. There's no rage on the river, just good-will.

Thursday 15 April 2010

comments and other tecky stuff

Some people have said they've tried to post comments and can't. I've changed the settings so it should now be easier.

People have also said I must be insomniac as I'm posting things at all times of day and night. I'm not, but have noticed it was set to Pacific time zone so have changed it to London. 

Wednesday 14 April 2010

Inside a Russian cosmonaut

Rob took me to the Star City exhibition at Nottingham Contemporary. He said it would be 'diverting' for me. It was.

There's a giant space-suited model of Valentina Tereshkova, the first woman in space. You can wander around inside it.

The blurb says:"Visitors can enter her body through her legs, as if this Tereshkova goddess is the source of all life."

Tuesday 13 April 2010

Two youths at the bus stop

Youth one: "He don't do drugs, he don't drink, he don't smoke. He got cancer. He don't tell no-one. Once you've got cancer you've had it."

Youth two: "But people pull through."

Youth one: 'They pull through yeah but cancer it keeps bouncing back. Once you've got cancer you're finished man!'

I turn round to them:
"I've got cancer and I'm gonna pull through," then hail my bus.

I NEVER talk to youths at bus-stops. What's got into me?

Sunday 11 April 2010

Top of the ops

I've been talking to people about their operations.

When Mike B went in to have his brain aneurism out they opened him up but nicked an artery and couldn't operate, so he had to go through the whole thing again. He was unlucky.

Trish said her friend woke up in the middle of hers.

John L said he'd have a general anaesthetic every six months if he could: "It's the best sleep you ever get."

I'm booked in for an uber-operation on 21 April in which they remove the breast and reconstruct it using the latissimus dorsi muscle. (Only rock-climbers need this muscle apparently so that's ok). I'm shit-scared. Never had an operation. Most people have, it seems - even the cat! The surgeon is reputedly 'an artist' and the hospital is one of the best.

Friday 9 April 2010

Cider with Nick and Vince



They don't give you sick notes any more they give you well-notes. Appropriate as I still feel well despite the non-benign presence within me.

After a couple of shitty days yesterday was a good to be alive day - with glorious spring sunshine throughout. After nightfall we lay on the trampoline and watched the stars come out. Amazing how many constellations you can see even in the city.

This week's good news is they've scrapped the cider-tax. Lib dems are claiming the credit for this to help the Somerset producers - West Country people being about the only ones who vote for them.

Thursday 8 April 2010

Smart move

Woke up this morning to find the SMART car had slid down the drive again to rest against the wall.

IT'S TRYING TO GET IN THE HOUSE!

Bumped into Brian from two doors down. Told him my news, and he reeled off a list of his ladyfriends who have had breasts removed - most of them, it seems!

And now Martina Navratilova has come out of the closet too. What with her and Kylie I am in illustrious company.

Monday 5 April 2010

Everything gives you cancer

My acupuncturist thinks plastic bottles can give you cancer. The chemicals leach out into the water apparently. She also thinks it may be something to do with milk - growth hormone given to cows feed the cancer cells. Seems logical.

She subscribes to a magazine called What Doctors Don't Tell You - which seems to major on a giant conspiracy around conventional medicine.

I think while it's worth looking at such views you have to be careful not to sink into a slough of paranoia and negativity.

Anything could give you cancer but as for treating it, I reckon at the moment, conventional Western medicine backed up with a bit of complimentary is probably my best bet.

Friday 2 April 2010

medical mutiny

Emma told me about someone she knew who wrote a book called medical mutiny. He was diagnosed with a nasty form of brain tumour called something myeloma and after reviewing the options on offer from the medical world decided to decline conventional treatment.

They usually use a severe regime of chemo and other nasties to treat this condition and even then people are only expected to live about four years. This guy treated himself with vitamins, acupuncture etc and lived for eight.

Makes you think!

Thursday 1 April 2010

options for the op

I've got to decide which operation to have. Each time I see someone new, they add to the menu of possibilities. Basically they all boil down to this - I've got to have the nasty stuff cut out and the hole filled in with something.
If I was fat, they could use stomach tissue to infill- and I'd effectively get free liposuction on the NHS into the bargain. But I'm not. So the best option is to use a muscle from my back, which apparently I don't need. The advice is, do lots of swimming and gym work before going under the knife, to build up this, and other muscles.
The irony is, I feel about as healthy right now as I ever have. It's hard to believe there is anything wrong with me.