65. Trying to take control (and failing)

On the day of the appointment to discuss the DIEP with the lovely reconstruction breast care nurse we had had an Ofsted monitoring visit, so immediately after the appointment it was back to school.   My school was graded as “RI” requires improvement last March and since then the Principal and entire team have been working hard to improve outcomes for our students.  We’ve had a variety of visitors, many look at the data and think we should be in a different category, but when they come to see the students in classes, the teams working together they see more than the data – they see the community working to get year 11 over the line, to ensure that there is rigour, challenge, pace and enjoyment in lessons and to see that progress is being made.  The monitoring report is now available on line and it doesn’t paint the full picture, not least as the HMI is limited to using a certain number of statements and judgements.  One thing was clear the HMI would return in the Autumn term.

With this in mind I decided to write to Mr X to plead for the surgery to be sooner rather than later.  If my rebuild could be in the late Spring then I’d have the Summer term to recover, have a phased return in July and then the summer holidays to be in tip top condition for a September start.  I outlined this and my other reasons

  • Ofsted will return in the Autumn and I want to be in school and part of the team.
  • My classes are just about ready for the last preparations for their exams.
  • Physically the cannonball implant is hideously uncomfortable, feels as it it is made of concrete, is painful by the end of the day and I’d like it to go.
  • Psychologically I’d been preparing for the rebuild from September and had the dates of 20th/27th March in mind.

I knew it would be a long shot, and am aware that the NHS has limited resources, increasing demand and this surgery is elective yet…and yet….. and yet…..

So the letter was sent a month ago and there has been no response.  Maybe consultants don’t write direct to patients, maybe it goes through the GP or maybe there is no chance and no one actually wants to tell me.  So I decided to pluck up the courage and speak to Mr X’s secretary.  I phoned from school, spoke to a young man and was told I am now 14th on the list and “it could be July, could be August, could be September or…closer to Christmas”. I am beyond disappointed.  My plan once again is not the same as the NHS’s plan.  My glass is not half full, it is completely empty and cracked. My bag has been packed for a month.  I’ve asked to go on the short notice list… highly unlikely that this will happen given the nature of the rebuild.  Life is back in limbo… it is so difficult to plan anything – just in case.  Every day on my return from school I look to the post and the ansaphone – nothing yet.

Tip:  It is difficult to accept the fact that you have no control.  Feel free to feel disappointed. 

64. How to manage (great) expectations

In an earlier blog,  “51 en route to reconstruction” I explained how I’d met Mr X in September and been told that my blood vessels in my tummy where good for being plumbed into my underarm and chest.  That was back in September 2018 and the dates mooted for reconstruction were the 20th or 27th March 2019.  I’d been offered a possible date before Christmas but I’d declined as I didn’t want another winter at home recovering from surgery and I wanted my students to be as well prepared as possible for their public exams.

I had an appointment to meet with the Breast Reconstruction Nurse and to prepare for this I looked at a variety of forums, spoke with a friend who’d had this reconstruction and typed up an A4 list of questions.  As far as I’m concerned knowledge is power and the more you know the more you can be prepared and then manage expectations whilst looking for milestones of recovery.  My first question was is it the 20th or 27th March …. due to unforeseen circumstances the potential date has been moved to June or July.  The other questions were all about the surgery and recovery but paled into insignificance compared to the date.  I do now know that I will require big Bridget Jones pants, my zip front M&S Sports bras will have to be worn for 6 weeks, a bear hugger (actually a bair hugger) will be used to keep me warm, I will enjoy a carbohydrate drink to enhance recovery, probiotics and Vitamin C and Zinc are good to take… my list was extensive.  The lovely BCN (Breast Care Nurse) was patient and explained that the surgery took about 8 hours and it was 5-7 days in hospital and I would feel as if I’d been hit by a truck.  Nick had come with me and just as well as at one point I cried and needed his hankie… this really, really wasn’t on as I’d come to the meeting in my school uniform with lanyards on.  My BCN was a little taken aback, as was I, as I hadn’t cried for sometime and never in front of her or Mr X. The surgery is daunting and the recovery has to be taken slowly.  I would never be the old me… I’d have a new set of scars.

I think part of the tears making their appearance was the fact that I had a timeline which I’d been working towards… that is if surgery was at the end of March or sometime in April my exam classes would be on the home run, I’d minimise disruption to my colleagues, my other responsibilities would be picked up and held until I could return in July and then… I’d have the entire summer holidays to get really fit and make a flying start in September.   Also the wretched Cannonball would be making a hard Brexit from my chest instead of which it would be hanging on – not even a no deal exit…. just no exit at my convenience.  Best laid plans and all that…..

Tip:  To have an understanding of how hospitals operate and the pressures they face watch the programme “Hospital” on BBC 2 – the tag line is “the story of the NHS in unprecedented times”. 

63. A trial and a wake.

One morning I received a phone call which invited me to a trial.  Initially, I thought this would be a trial of some new wonder drug which would keep the cancer at bay and would reduce the side effects of Exemestane.  As I’ve written before Exemestane, like Letrozole is an aromatase inhibitor which reduces the levels of estrogen and has side effects which include hot flushes, feeling fatiqued and having joints of a 99 year old first thing in the morning.  However, I had that wrong – it was not a drugs trial but a workshop trial.

The workshop was held locally and was hosted by a lady from Macmillan cancer support and a lady from Southampton University.  The oncology breast care nurse and specialist support nurse were also present and a research doctor who was there to oversee the entire process.  There were eight guinea pigs who were going to trial the workshop.  All of us had had breast cancer, some double mastectomies, some lumpectomies, some single, some had had radiotherapy and some chemotherapy.  Some had been diagnosed some years before and for others it was a much more recent experience.  We had all passed through the Primrose clinic and there was a sense of camaraderie in taking part.

We introduced ourselves, our history and something we liked to do and then it was on with the presentations.  These were adapted from a previous workshop for men moving on from prostate cancer – it was a way of getting on with life once you’d been set free from clinics.  There was discussion about a new portal to gain information e.g. blood, scan, x-ray results, advice about diet, exercise and managing symptoms  – it was all fairly upbeat, informative and useful.

The final session however was far more salutary as the focus was on being vigilant and what to look out for.  Including the importance of examining your breast(s) even if you’ve had a mastectomy as cancer can return in the margins, should you turn a shade of yellow hurry and get your liver checked out, should you be breathless without a cold get your lungs checked out, if your long bones ache (even when resting) get these checked and if one’s eyes start going googley with a headache that lasts for three weeks then get it checked out as you may have mets in the brain.  The research doctor who’d been monitoring the workshop asked for our feedback – we all agreed the premise was great but the execution needed a bit of work.

Secondary breast cancer is real, it affects many women.

One such woman Jacqui B  lived a full and exciting life for several years after a secondary breast cancer diagnosis.  Jacqui had been skiing and hurt her leg – on investigation the cancer had manifested itself in her bones.  Jacqui took every opportunity from oncology, lived life to the full and was a great support to others including me.  A few months before Christmas she cycled in India to raise money for Women v Breast Cancer and wore mad outfits which she made.

In early January I heard that Jacqui had died and was very distressed – this was a woman who was full of life and was vital in the real sense of the word.  She was always positive and always glass half full.

After the moving on from cancer workshop I went to Jacqui’s wake in a lovely restaurant overlooking the sea – Jolly Jack’s.  The place was full of men and women talking about Jacqui and organising ways to keep her memory alive – one way is to take part in a Jurassic Coast Mighty Hike.  To contribute to this Mighty Hike click on this link and find out more.

It was a sad and uplifting end to my day… made more extraordinary by the fact that that as I left it had started to snow.

 

62. The first of five

The Autumn term is the longest and, in my opinion the toughest.  This academic year 2018-19 the second half of the Autumn term was eight weeks long.  It is is always busy on the run up to Christmas and this term was no different.  However, there was a couple of new activities for me.  The first was that I had met with the Chair of the Primrose Foundation and had a good chat which ended up with an invitation to read at the Carol Concert in aid of the charity.  I was given the reading and took it to school to one of our Drama teachers to be coached into making sure it was a good reading.  The service took place at the Cathedral Church of St Mary and St Boniface, it was a very chilly evening and my mum and daughter came with me – three generations, five boobs and one cannonball.  The service was lovely and the Stanborough Chorus were amazing.  The evening raised £600 for the Primrose Foundation.

Primrose carol service

The first of five… the first of an annual mammogram was booked in a couple of days later.  Nick and I made our way to the Primrose Clinic on floor 7 of Derriford.  I had developed “scanxiety” which was a silly feeling as I felt anxious about having a mammogram.  Before the scan I had to be examined and met a new lady breast surgeon. New to me and new to Derriford.  Ms Z met us in the examination room and asked “do you know why you are here?” to which I responded yes… “but do you?”.  She knew, I knew so it was off with the Paso cape and on with the examination.  Both the cannonball and normal breast appeared fine so I was discharged from this clinic and sent off to the  mammogram room.  Here a young woman told me that we’d start with the left breast.. I had a good chuckle with this and told her I didn’t think they’d want to do that as I reckoned the silicon implant might pop.  We agreed that the right one would be screened as so it was arm up, breath in, stand clear, arm round, breath in, stand clear.  The Radiographer told me that the results would be sent home in a couple of weeks and that was that.  Nothing to worry about, no need for scanxiety, clothes on and off out of the clinic, down a flight of stairs, through the concourse and head home.

A letter arrived four days letter – all clear, no evidence of disease – come back in a year!  First one done, four to go.

61. Getting ready for the rebuild

I am going to be rebuilt in the Spring of 2019 – provisional dates are 20th or 27th of March.  The rebuild will involve taking skin and fat from my lower abdomen, removing the cannonball and inserting tummy into boob area.  I have requested the Elle McPherson look (it is not one they are familiar with).

To get ready for the rebuild I had to have a CT/Angiogram scan where dye is injected into your blood vessels and they are assessed to see if they are suitable for plumbing in.  A couple of weeks after the scan I received a letter inviting me to attend a consultation with Mr X.  As usual I did my research and found an article about CT/Angiograms for DIEP flap reconstruction so had a list of questions.

SCAN

I had noticed that the arteries looked remarkably like river drainage patterns

River drainage patterns

I hoped mine were dentritic and not deranged.  I took my article and diagrams to the consultation, asked which mine were like and Mr X drew a diagram for me.  All I needed to know was that I had 2 promising looking blood vessels near my tummy button.  We discussed dates and whilst he favoured before Christmas I explained that if we could wait until Easter then my exam classes would be on the downhill slope for public exams.

Almost immediately I was invited for a pre op assessment, I phoned the breast care nurses to see if this was a mistake but not so as plastics like to book in early.  So another trip to Derriford.  As a frequent flyer I thought an hour would be enough to drive up from school and park, but no as when I arrived the roads were gridlocked and the impossible car park was full.  After driving for 30 minutes or so I eventually found a space in the pay and display car park on what looks like a bomb site.  I had to empty my bag to find some change, quickly got a ticket and ran to Erme Ward…. past the Fag Ash Lil’s in their PJs, through the concourse, down the stairs to floor 4 and check in – breathing hard.  I was on time…. just!

I was asked to fill in a long questionnaire which I did, handed it in and was called through by a jolly Health Care Assistant who took my blood pressure… it was slightly raised as I’d run from the car park to the ward, took my pulse and then I was asked to step on the scales.  BMI:  24.1 yipee!  The HCA told me about a previous patient who had a BMI of 55 and how the operating tables had to be extended to accommodate them.  Next it was to have bloods taken, then a very kind nurse went through my medical history and presented me with a bag which contained Hibicrub and Bactriban and instructions to wash with it 3 days before the surgery.  Final stop was to have an ECG – to check my heart trace, electrodes were attached to my chest, ankles, wrists and one over the cannonball.  Much to my surprise I wasn’t heartless… I would be able to share this news with my students when I got back to school, as I fairly sure they think I don’t own a heart!

My parking time had run out and I had to sprint back to the car – then drive to school – I was running late and phoned in, I think my blood pressure was up again by the time I got in.

The next task:  get blood pressure down, get students to make progress, get super fit and strong for the surgery…book into barre, spin and Pilates.

 

 

60. A year to the day…..

By the date today, 17th November it is an entire year since I had a left, skin sparing mastectomy – today is Saturday and last year the actual day of the surgery was a Friday.  Yesterday morning I woke at 4.45am and found myself crying.  This was no good as it was a school day and the invincible Mrs O doesn’t do weepy stuff anymore.  Apparently, I still do.  I’m pleased to say that by the time I went in the shower I had cried it out.  I put a post on Facebook as follows:

“Mixed emotions this morning as this time last year I was having a bit of toast and a cup of lemon tea before heading up to Derriford for nuclear meds and surgery. Relief to be here today and sadness it all had to happen. Onwards and upwards. Lots to be grateful for.”

I have got lots to be grateful for.  Last week Maddy from the Primrose Unit and Michelle one of the D2B dancers and I were interviewed by Michael Chequer at BBC Radio Devon.  We could not have been made to feel more welcome, it was so relaxed and we all laughed as we talked about cancer, diagnosis, what comes next and the £12,947.33 raised by the ball.  I’m not sure how long this link will last but here is the recording… we are on from 1hr 8mins.

BBC Radio Devon

There are plenty of other things to be grateful for too.  I’m very grateful to the radiographer who ultrasounded (can that be a verb?) my neck and found that the lump which had been felt at a previous oncology visit was not a tumour, was not a chunk of brass or indeed a bolt but nothing more malign than a large, chunky and prominent lymph node – phew!  I’m very grateful to Mr Y’s registrar, Dr T, who I went to see first thing on Monday 5th November in Oncology who discussed the results and talked through the side effects of Exemestane.  I have decided to put up with the volcanic hot flushes and pyroclastic temperatures rather than take any additional medication, particularly if it makes me erupt and feel dizzy…. there aren’t many opportunities to lie down in the teaching profession.    I’m very grateful that Dr T had a sense of humour when I told him about all the proper poorly looking people waiting for him in reception and that I felt a bit of a fraud in my school armour and lanyards.  I’m also grateful for my colleagues who allow me to decompress from each hospital visit before coming back into school.  I’m grateful to Nick for coming with me on these appointments and not rolling his eyes too much when I say something daft to the medical professionals like I did to Dr T….  “did you know that Venlafaxine is an anti-depressant as well as something to control hot flushes, so do you all think I am a looper….” apparently he did know that and the dose I’d been given was so small it wouldn’t affect any mental health issues I have.  I could tell he could tell because he was wearing both a lanyard and a stethoscope – no white coat though but I’m sure he was a real doctor.

I’m not at all grateful for the sodding, impossible car park which at 8am was a challenge!

Below:  Michelle, Maddy, Me at the BBC Studios in Plymouth and in the background our host Michael Chequer who was not chubby at all.

Radio Devon

59. Acupuncture

Having failed miserably with the new drugs to control hot flushes I booked myself an acupuncture appointment.  I’d been in correspondence with the practioner and duly turned up at an address in Hartley in Plymouth… it looked like a family home, which is was.

The young woman acupunctuarist (Sp?) beckoned me in, invited me to sit down and took my history.  This involved finding several different pulses in both wrists and looking at my tongue whilst asking me heaps of questions.  Did I rush about a lot… yes I did… did I suffer from heat… oh yes… did I have headaches.,. yes when tense….  and I told her about the breast cancer, the implant and the drugs which was the reason I was here.  So once diagnosed with a YIN pulse I had to lie flat and she placed 4 needles in each foot and ankle.  It was a very strange sensation – the needles were very fine so it didn’t hurt as they went through the skin but there was a surreal nerve reaction to each one, it was almost as it a pulse of electricity was released.  Further needles were placed in my right hand and wrist (she wouldn’t touch the left side as that was the mastectomy site and side) and then I had to lie quietly for 30 minutes.  The good news from this is that the treatment didn’t make me vomit.  The bad it cost £60 and it takes a series of treatments to be effective.  I felt fairly zoned out but I think that was due to the rushing about in the day and an enforced rest period at about 4.30pm.  Have the volcanic hot flushes stopped… no not yet.  Am I convinced… not entirely, I’m rather sceptical but I will give it another go.