26th February Results of 'Investigations'

This morning I had the rest of the 'investigations' following the discovery of cancer in the lymph nodes - ultrasound scan of the abdomen and liver, and a chest x-ray to look at the lungs.
The sonographer could find nothing abnormal in the ultrasound scan and the radiographer couldn't see anything immediately worrying in the lungs.
I met with my breast care nurse to discuss surgery and prostheses after that, and she went to find out if they'd had the results of Monday's bone scan and blood tests. She came back with the message that they couldn't see anything obviously wrong in the bone scan either.

So that's all good, then.

I have been prescribed tamoxifen, 1 a day for the next 5 years. I'll pick up the prescription on Monday.

I really didn't like facing up to the fake breasts and talking about weird, special bras with features suitable for mastectomies. I didn't take any of the catalogues home. It's all a bit much.

22nd February Bone Scan

In-service training day for teachers today after the half term break. I went into school to clear away a few personal belongings and make some space for Esther to set herself up as the new class teacher.

Barbara accompanied me to the bone scan appointment at noon. Once again, the receptionists in Medical Physics were welcoming and friendly. Barbara recognised one of them. (She knows everyone, from Les and Les in The Lyndhurst to Roz with the purple hair at Asda!) This lady had been a parent of twins Barbara taught 20 years ago in Tilehurst.. so they had a natter. Then Barbara gave the physicist a run for her money, and interrogated her about how the radio-isotope was going to show up cancer in the bones.

Well, apparently, the radioactive thing is injected in the veins, sloshes all round the body and settles in the bones all over, after about 3 hours. The scan picks up 'hot spots' where the marker shows that there's increased bone density or extra growth. This may indicate cancer, but has to be carefully interpreted because it may mistake things like arthritis and bone scarring from previous fractures. Cancer can appear anywhere, in any bones, but it may often appear in the spine and ribs.

The physicist took a blood sample for another cancer hunting test, injected the marker, and sent us away till 3.30. So we went and played at being Ladies Who Lunch, in town on the riverside. Could get used to this bit..

The scan at 3.30 was a lie down affair; I had to keep still for 20 minutes while the bed slid slowly out from between the scanner sandwich things. The results will be interpreted by a radiographer - not the operative who took the scan (she was saying nothing!), and will be available in a week, for my consultant to share with me.

I got Barbara to take a photo of me on the scanner couch, and she and I had a quick look at the fuzzy grayscale pic of me on the screen. The operative wouldn't let us take a photo of the image, and we aren't trained radiophysicists - but - we both concurred that there was a fuzzy black triangular shape in the bikini area!! :) Note to self; have a little tidy up when you get home!

Will and Ben met us after school in the hospital, and got a free Radiation in Medicine lesson from the very kind resident medical physics geek while waiting for my scan to finish.

So - all in all not a very stressful procedure today , but it's little things like these hospital appointments that keep reminding me I must be ill, or they wouldn't be faffing around doing all these tests.

Asda on way home; fajitas for tea.

19th February End of Half Term Holiday progress report

For my birthday present, Bill bought tickets for the dinner/theatre at Sonning for Wednesday 17th. Judy and David and Natalie and John came with us. We did have a very lovely evening together. I wore that interview jacket (which didn't help!), with a beautiful pink corsage (which did!). We saw Simon Williams, Philip Pope, and Issy Van Randwyck in Simon William's own piece - It's Never Alright on The Night - a collection of funny showbusiness stories - sort of 'stand-up'.. anyway - very good. Bill and I really rate the Mill at Sonning for a good evening out.

Saw my GP today and got a sick note for my employer, and an exemption from prescription charges form. I have a bone scan on Monday, and liver ultrasound scan on Friday. The appointment I would have had with the breast care nurse yesterday about reconstruction surgery options (choices about boob jobs made from tummy tucks versus implants etc) has been commuted to an appointment next Friday with her about what kind of socks I can stuff my bra with!!

Then there's a physiotherapist appointment for the axillary cording on the following Monday. This tightening of the tissues in my underarm is quite painful when I try to stretch my arm, but apparently I must keep trying to. It looks like tight wires in my armpit, running to my elbow. Oww! And I don't think the lymph drainage system's working too well, because I feel like day 2 after the boys were born - when the milk came in.. aaagh.

After that I have the joy of meeting with the Fit For Surgery Hospitality Competition runners up on Friday 5th March - to assess my suitability to be further mutilated at the public's expense. Actually I know what this is all about.. it has little to do with how well you are able to cope with surgery, but more to do with (a) checking you aren't bringing MRSA or any other bug into hospital with you, and (b) providing human pin cushions for their student vampires to practise on. Hey ho. (how do you show a smiley on this blogthing?)

After that I will be twiddling my thumbs until the 19th, apart from appointments to discuss results of these scans and investigations. I'm not generally miserable, so now's a good time to say hello. I'll try not to bite your head off - unless you catch me on another dodgy results day... check blog to gauge mood if unsure!

16th February - Results of Sentinel Lymph Node Biopsy

Had a lovely birthday on Sunday. They sang Happy Birthday to me in church. Made me cry..
Friends visited, and we had a really good family dinner together - Bill cooked a lovely roast.
Mum and Dad had planned to visit me on Monday - even after Dad's nasty turn last Tuesday.. but then - Mum cancelled because my poor dear Dad had become violently sick on Sunday afternoon. Could be the Norovirus? Andy came over anyway. It was great to see him, and now he's gone off to his Mum's for the week.

This morning Jean took me to the appointment. The results of the sentinel lymph node biopsy are: they removed 5 lymph nodes; one was cancerous. This means:

• they will remove all the lymph nodes when they do the mastectomy.


• they will count how many are cancerous after having removed them


• if more than 3 are cancerous they will definitely want to do radiotherapy because without it there is a much higher chance of cancer recurring in the breast


• radiotherapy is done before reconstructive surgery


• I will have 2 operations - one mastectomy, and then, much later - reconstructive surgery to balance my shape, if wanted (! hah!)

Since I have cancer in the breast and lymph nodes, they are hunting it elsewhere too. Next week I get a bone scan, a liver scan, a chest x-ray and some blood tests, because if breast cancer metastasises (spreads), it usually goes to the bones, liver and lungs.

I asked about the likelihood of needing chemotherapy (which would come between mastectomy and radiotherapy typically), and I came away with the impression that this is likely, though in what form is not yet known.

They looked at my armpit scar and I pointed out the horrible tight 'cords' which have appeared which limit movement and cause pain. The nurse said something about physiotherapy. I looked up these tight 'cords' online at home - it's now called axillary web syndrome and is a common occurrence after axillary node biopsy. Sometimes it doesn't go away. It is a risk factor for lymphedema. I was told to keep exercising and stretching even though it hurts.

There isn't really a choice as I see it. I asked about other treatments, radiotherapy during surgery, lumpectomies, and was advised that there isn't really much choice in my situation, with my size tumours, and little areas of abnormal tissue in my size breasts. I could risk opting for a mastectomy with immediate reconstruction - hoping hard that the axillary node clearance brings up no more than 2 more cancerous nodes (which is the threshhold level for radiotherapy being given post-operatively). But that's gambling. It would be a painful shame to see good reconstructive work go to pot with the damage that radiotherapy would do to newly grafted tissue and implants.

I am therefore having a mastectomy without immediate reconstruction, and the axillary node clearance on the 19th March. That's the earliest my surgeon can do. I have to visit the Fit For Surgery folk again before then to be deemed fit. (hmm.. if I were fit, I wouldn't need surgery!!) Last time they saw me they made a real hash out of getting blood samples, their receptionists were grumpy and unhelpful, and they don't even try to keep waiting times down. So I didn't stay today to be assessed, ("take a number, about an hour's wait, love") but made an appointment for first thing on March 5th. Surely they won't be running late with their 1st patient of the day?

So, not to worry. Came home, Jean and I got stuck in with pancake making for children's brunch, rearranged my farm, shopped at Asda. I'm thinking Chilli Con Carne for tea..I see they're getting Colombian bananas in now. But we always buy the Fairtrade...

February 9th - musings on not being at work

So, I didn't want to be posting trivia daily... but the temptation is great! It has been a very long time now since my day surgery - sentinel lymph node biopsy on the 5th. It has already been a lot more than 4 days!! :) hmm. The breast care nurse says I have to wait until the 16th to find out the results of that procedure. The results are in on Wednesday 10th, but the consultant's next clinic session - where he feeds back to patients isn't until next Tuesday. These results will show if there is cancer in the under arm lymph nodes too. If yes - then more scans to see exactly what else, if anything, is affected. If not, then straightforward surgery followed in many cases by straightforward chemotherapy, I think.
The children have expressed delight at the idea of a stay-at-home mum for a while... they think I'll be getting up well before them, fussing over cooking them each a full English breakfast, and then lovingly making their packed lunches for them, dusting and polishing and ironing and darning until each one arrives home from school , then settling down with them one by one and showing a Grannie's delight and interest in their day, and helping with school projects and homework whilst stirring up delicious home made evening meals with the other hand. Sadly, it's true, there's a part of me that would like to be the sort of person who would find fulfilment in that, and I've been practising a bit so far, because it is a noble lifestyle, which I admire.

But then, there's the other side - as I see it.. full time mums command less intellectual respect from their offspring, and are statistically less likely to be able to be of use in helping with homework; they risk denying their children important creative independence skills - gained only from having to fend for themselves on a daily basis; they become doormats to their family and uninteresting company for their peers. Apparently, the very best model is the part time working mum. So as soon as they started coming in from school today I went to bed for a nap! I got up later and directed Ben to cook pork steaks, peas and chips (all from the comfort of my armchair), and have backed out of helping Little John with his homework. I helped yesterday. He can plead with William to give him a hand, or he can jolly well square up to the task by himself!

Anyway - this week off work isn't really a career decision. My sore wound is more achy and bruised than I expected - but still easily pacified with ordinary brufen etc. I have felt more tired than I realised. Monday and Tuesday I got up early and bouncy, did the perfect mum thing, kids off to school, made their sandwiches, waved hankie at door .. but then felt stupidly tired after a spot of housework - vacuuming, ironing etc.
What IS going on? I am not known for needing to vacuum, dust and polish. I haven't spent my weekends these last 7 years catching up with housework because my job has prevented me from my life's ambition to have an immaculate home.. Life has always been too short for that. The weekend was a non-stop hoot; giggles with friends, cups of tea, cake, flowers, facebook!
Lots of people have made time for me - visits, calls, messages.. I love company and being the centre of attention, and I enjoy being hospitable - so from that angle - it's a win win situation.

This evening, Mum phoned, briefly, about something else. I knew something was up because she was on her mobile. She didn't want to tell me - but I got it out of her (there's a kind of satisfaction, like hooking out a garlic snail from its shell with those little forks; fiddly but worth it) - Oh dear...
She had to take Dad into A&E today because he had such a massive pain in his right, swollen, immobile arm, a cramp or something - and he was at screaming point with pain. When she got him to hospital he had by then also got pain/immobility in his right leg and wasn't able to use it. So they've kept him in, and dosed him up with horse pills or something. Get well soon, Dad!
And that's really why I posted today. So you can know too, and pray with me, for Dad.

February 5th - Day surgery; Sentinel Lymph Node Biopsy

At 5.15 am Bill brought me a cup of tea, like he usually does before setting off for work at 5.30. It's great someone's being normal.
As soon as he left I got up, showered, cleaned the bathroom, washed the floor, changed the sheets (including the valance.. now that really is a measure of how abnormally I'm behaving!), dusted and hoovered the bedroom, did my hair and make up, packed a bag, left the children and got a lift from Jennifer to the hospital for 7.30. Couldn't sleep anyway.

Name, date of birth, first line of your address, name, date of birth, hello I'm a surgeon, first line of your address, are you allergic to anything?, name, hello I'm the anaesthetist, have you got any crowns? metal work? piercings? date of birth, address, doctor?, have you eaten anything? name, date of birth? On and on, this is what we're going to do, sign here, wear these surgery socks, hello I am another doctor, name?, date of birth?, have you had a drink since 6.30? No. Good.

I think they do it on purpose. For the first 40 minutes it's non-stop repetition, meeting the team and confirming my identity. This is so that when they then leave you to wait for your turn (11 o'clock) with nothing at all to do - not even a ward TV and a spot of Jeremy Kyle - you don't notice for the first half hour because you're just glad not to be asked your name again. The waiting really dragged on. It wasn't a very cheerful place. The other women nearby were also waiting for breast cancer surgery. Not a lot to laugh about.
Everyone else went and came back. And started to eat toast! Just as I was trying to catch some shut-eye my number came up.
Friendly people escorted me to theatre and they did that clever thing where you don't realise that they aren't just laughing and joking with you till you wake up and wonder at what point they knocked you out with no warning. Cunning, these Indians.
It hurt straight away and I was so cold. The painkillers worked very soon, so that was fine. And - get this - they gave me a bair hug blanket thing..a disposable sheet thing with 'duvet' type channels in it, which they attach to a warm hairdryer type of thing and it inflates to make a warm cosy blanket. Fab! Did they re-use them? No. Good. I've nicked it. Already tried it out at home. I love gadgets.

I went back to my bed on the ward and everyone else had got dressed and gone. I watched the boys coming out of school. Ben waved at me, and came in to see me, and, rather than taking the bus home, came home with me in Judy's car.

I feel really warm and fuzzy and irresponsible. I am glad the bedroom is all clean. Ann bought me flowers on instruction from Mum. They are lovely. With cabbages!

February 4th - Leaving Work

The two and a bit weeks to wait between getting my results and having the sentinel lymph node biopsy would have passed unbearably slowly had we not had the excitement at work that following week.



I went back to work on Monday, and that was the day we received the OFSTED phone call: they were coming in Wednesday and Thursday to inspect our school. Thank you God! What a brilliant distraction. I mean it. The days flew, and then, what with back-patting on Friday, we got through the first week in no time.



At the weekend Bill and I took Ann down to the Isle of Wight to see his parents and to finish a job on our boat - fitting the new exhaust manifold. Bill was very keen that I get on with it - crawling down into the engine bay on my front and wrangling upside down copper nuts into position on a freezing cold February day, because, as he pointed out, this would be my last weekend of being able to do practical, arm wrenching, chest squashing, boat maintenance work.


And who says chivalry is dead?



Monday and Tuesday at work. It was reasonably normal. I was planning Wednesday. How to tell the children I wouldn't be there for some time because I had breast cancer? I was planning how I'd encourage them to ask about their concerns and to tell them about how I'll be fine, and what treatments are available these days, and how,although we wouldn't know for definite how long I'd be off work, they would be well looked after, and I'd still expect them to work hard while I'm away.

In the end that's exactly what happened. Jackie and I gathered all the year 5s together, and I told them how it is. And I answered their concerns and it all went very well. I pitched it just right. They asked about everything from causes to death to baldness to contagiousness. I got a LOT of heartfelt and uninhibited hugs from the likely ones and the unlikely ones. I sent them all home with a letter to their parents, simply explaining what I'd said to the children.




Thursday. I have just been to the Medical Physics Department at RBH. They injected me with a radio isotope. Tomorrow I'm having day surgery to remove the sentinel lymph node - the isotope will help them track which one it is. Then there'll be more news. Then there'll be more plans to make. Then there'll be major surgery. Then there'll be more news. Then there'll be something else. And we don't know yet what.

I feel odd. Afraid and curious. And also a bit of a fraud. I don't feel ill.
Don't worry - you soon will...

January 21st - Telling Mum and Dad

Mum and Dad were not expecting me. I arrived carrying a bunch of flowers and the roasting dish I had borrowed from them at Christmas.
Mum, in the kitchen, seated at table going through her bank statement and checking off items in her cheque book. Enter Steph through back door.
Mum: Hello! Hi Neffie! What brings you here?
Steph; Hi Mum, I just thought I'd say hi, and I really needed to bring back this roasting dish.
Mum; Oh, okay. Just a minute, I'm in the middle of these bank statements. (busies self with adding up and totalling things on table).

Mum carries on. Steph wanders into lounge to find Dad in a chair, trying to do his speech therapy exercises - making a face and uttering a sound - eeeee, mmm etc.
Dad is suitably surprised to see me. Gives me a 'you ok?' expression. I never drive 70 miles to visit them unannounced, and never ever in term time. I tell him, it's all right I haven't been sacked or suspended, but I do have a day off and wanted to come and see them. I said I'd talk to them both together a bit later on. Dad is patient, and we 'chat' about other things.

Mum offers cups of tea and then explains that Dad has a chiropodist appointment in twenty minutes in the village. We all go. It's quite good.

The chiropodist has a spare slot and does my feet too. Wonderful; now I have soft feet - hard skin removed and nails properly serviced - all for £15!

Then we have to fuss about lunch. Then we have to eat lunch, Dad and me. Mum ate earlier when she left us at the chiropodist. She fusses in the kitchen. I tell Dad that I have come to speak to them both, and I have a little cry on his shoulder. Dad tries really hard to get Mum to come and sit down and listen to whatever my news might be. He stands around flapping and gesturing. He reminds me of Daddy Pingu.
Mum lashes out. Why should she have to stop the very important job of loading the dishwasher / wiping out the fridge / tidying the shelves / whatever just because Stephanie has turned up out of the blue and wants an audience!? She delays some more.

I just sit in the dining room and wait. Poor Dad tries again. Gets his head bitten off again. Eventually she comes and I get her to sit down.
I feel really mean doing this. She has more than enough angst every day ever since Dad's massive stroke in October. Who will she be able to talk this through with? Dad too - how can he mull it over? He can't speak. And she can't listen.

Deep breath.

Steph and parents sitting at dining table.
Steph: Right, well, I could be here because I have lost my job, but it's not that. Or I could have been suspended, falsely accused of child abuse. But it's not that. It could be, but it isn't, that we need money, -
Mum: Is Bill all right? Has he lost his job?
Steph : No. And the children are fine, and Bill and I are very happily married. In fact better than ever. So what does that leave? Well.. (another breath).. it's me... I've got breast cancer.
Mum: Oh Neffie!

January 20th - Consultant appointment; results of core biopsies and initial findings

Bill came with me to hear the consultant telling us the tests results. 2 lumps - 21 and 17mm, sufficiently far apart to require mastectomy. Breast reconstruction may be possible in the same operation as the mastectomy provided that radiotherapy is not indicated. A sentinel lymph node biopsy (actually - removal) will tell if the cancer has begun to spread and, if so, then immediate reconstruction will not be an option.
I was given a variety of information packs and leaflets. I had possession of my notes whilst waiting for the breast care nurse. I copied everything out into my notebook. At the moment - information is power! Otherwise I'm totally powerless, aren't I?

Got home. After 3.30 I went down to school to have a cry with my friends. I couldn't decide if I would be ok to come into work on Thursday and Friday - after all - I'm not ill, in pain, am I? Jackie told me I wasn't to come in, and made supply cover arrangements. I am so thankful to her, for being able to decide for me. I had run out of sense.
Now these 2 days will give me a chance to drive down to Kent to see my parents, tell them face to face.