10. October – breast cancer awareness month

October is breast cancer awareness month.  I had become very aware of breast cancer and although I had told friends and family I decided to announce to my virtual friends on Facebook that I had managed to get this wretched disease.  This is what I posted:

“This month is national breast cancer awareness month. Unfortunately, I have been diagnosed with this disease so life has been a bit of a tail spin since 29th August. However, family, friends, colleagues, my school and the NHS have been fabulous at helping Nick and I through a turbulent time and what is likely to be tough few months after surgery. All and any offers of help and support gratefully received. LADIES – I have been very fortunate in an unfortunate way in that the sort of breast cancer I have (invasive lobular carcinoma) was picked up early by a routine mammogram as there are no lumps or bumps – if you have an appointment, MAKE SURE YOU GO! Look out for my book – it won’t be called “Dear Cancer, Love Victoria” a la Victoria Derbyshire but…”F**k Off Cancer, I don’t have time for this sh*t, so s*d right off, how very dare you, get lost…. Mrs O” This will be my one and only post about this – just wait for my book at Waterstones!”

The response was overwhelming and supportive.  Facebook and social media do come in for a hard time but I found it easier to tell people in this way.  That idea of kindness as a recurring theme comes back as people were sympathetic and thoughtful.

At the beginning of October I received a copy of the letter Mr X had sent my GP.  It was a very well written letter and it brought the issue into sharp relief.  I’d been fooling myself as I thought that if I turned up at the various meetings in my suit, name badge, school bag and looked professional then really the cancer didn’t belong to me.  The letter with the diagnosis and plan laid everything out in black and white.  It came as a shock which sounds naïve.  Although I’d been listening in the appointment I don’t think I really heard or understood.  The communication recognised that I’d requested a bilateral mastectomy, despite the disease only being on the left side, the potential problems with mastectomy and sentinel node biopsy, the dreaded radiotherapy word and how that could make a hostile environment for reconstruction, risks with implant based techniques and how surgery would be arranged after meeting again.

This letter was a real wake up call, the positivity I’d felt after meeting Mr X had dissipated.  The only silver lining was that I thought I had a degree of control about what sort of surgery would happen… geographers don’t carry out surgery as a general rule.  Dear Nick didn’t understand why I was sobbing uncontrollably in the kitchen as I read and reread the letter.  He thought I was “over it” and said so as I seemed so together…… “over it.. I sobbed, it’s hardly started”.

Tip: don’t be hard on yourself, cancer diagnosis is a roller coaster – seek someone to talk to e.g. in Plymouth we have the Mustard Tree.… someone who you can tell everything to without worrying about them worrying about what you are saying.

9. Meeting the surgeon

“An appointment has been arranged for you to see Mr X, consultant plastic surgeon, please allow additional time to get to Derriford Hospital as roadworks can cause delays”.

Back on the conveyor belt, next stop Primrose Breast Care clinic.  I had been into school, taught a couple of lessons, walked home and then given myself an hour to drive the three miles to the hospital and find a parking space.  Soon enough we were scouring the Birchfield car park for a space, once we’d negotiated the 45 degree slope to get the yellow parking token. Who designed this? Did it win an award for worst designed car park in Plymouth?  Who thought it was a great idea to have to drive up a 45 degree slope, apply the hand break and faff about to get the token.

Onwards past the smokers under the don’t smoke sign, many wearing pyjamas and dressing gowns, past Marks and Spencer’s food hall, though the concourse of the hospital, up the stairs to the clinic, where once again we signed in and sat down on one of the lime or orange chairs.  There is an eclectic mix of reading materials available, women’s magazines such as Grazia and Hello and a huge number of journals about steam engines – presumably to help put all the husbands and partners at ease.

We were called in by the Breast care nurse who we met on 29th August, into the same office as previously where a very young looking consultant met us.  Mr X explained I was a good potential candidate for an immediate reconstruction following mastectomy.  He asked to examine me and Nick and I trotted next door where I was given a purple cape to wear once my top and bra came off. As the Strictly season had started I announced I was ready for the Paso d’oble so Nick and I were laughing at least not least as he acted out like a bull whilst I swished the cape.   Only my breasts were examined, not my mental health.

Once again, I had to lie down, top off, my breasts were prodded, ummm no lumps and no bumps (were they really sure I had cancer?).  Mr X then measured the distance from sternum to each nipple – my goodness my breasts were amazingly symmetrical, 24cms from sternum to nipple on both sides, base width 16cms on both sides, height 13cms on both sides –  not bad I for an old bird. He then asked if he could take photos… fortunately not for his Facebook page as I asked but for the before and after.  Once I was dressed he then explained a variety of options and gave us a lot of information to think about which was all seemed very positive – I really did have cancer though as the MRI had confirmed it (as if the punch biopsy and ultrasound hadn’t).

I’d read, highlighted and put post it notes in the reconstruction booklet I’d previously been given and although I was listening I’d already decided that a reconstruction using acellular dermal matrix would be the best option for me.  This is where material from cows or pigs is used as a sling to support the implant and the pectoral muscle is placed over the top to make a secure pocket. We agreed to meet in a couple of weeks after I’d had time to think about it, I informed him and the breast care nurse that I’d be unavailable during half term as I was going to Prague for my “mental wellbeing” – for goodness sake! We were going to Prague as it had been booked before all this breast cancer nonsense and we wanted to go, stay in a nice hotel, eat some interesting food, drink beer* stooge about and have some fun with our friends from Italy who were coming to meet us. I didn’t appreciate that there is a timeline – it is the NHS timeline and if the patient goes over a certain number of weeks there are consequences.  I volunteered to write to someone in authority if it helped and attend the multidisciplinary team meeting the next day to argue my case but I wasn’t required.

*No alcohol and no dairy as the cancer is oestrogen positive so I cut both out of my diet.

Tip:  Take notes or get your friend, partner, husband to take notes to ensure things are not lost in translation and to help you hear as well as listen.

8. New experiences – the MRI

Life became defined by letters from the hospital and appointments.

The next stop on the NHS conveyor belt was the MRI scan on a Friday afternoon which meant setting cover for my year 11 class who were months away from their new GCSE exams.

I felt I could measure my progress by the progress of the road works on the way up to the Derriford Hospital, both were going slowly.  The MRI clinic was a challenge to find (despite having a geography degree) yet we were on time and I felt upbeat as I pressed the intercom and announced I was here ready for the scan. The radiographer was great, friendly, kind and matter of fact and I announced that I was Fiona and I had lobular invasive breast cancer, the more frequently I said it the easier it was to say.

Nick had to wait outside as I got changed into a blue gown with a seam across the breasts so it opened up at the front.  First stop was a chair which looked as if I was going to donate blood, not so as it was to fit a cannula into my arm so that dye could be injected into blood stream and highlight areas with abnormal cells.  Despite the fact that I’d read everything I’d been given I thought the injection went into the breasts not blood stream and this caused both the radiographers and I to laugh when I asked them what they were doing and told them the cancer wasn’t in my arm!

If you think of the episode in the Television Room in  Charlie and the Chocolate factory then it will give you an idea of the room with the MRI scanner in except….there appears to be a large tumble drier with a massage bed in front of it.  I was invited up onto the bed, and no I didn’t need help to get on, but I did understand the significance of having a front opening gown as there was a space for your face and two spaces for your boobs to hang through as you lay out on your tummy.  I found this very funny.

The radiographers arrange your arms above your head with blocks of foam and then arrange your boobs so they are in the right place.   After they have attached the ear phones to you, put the grey tube into your hand and explained to press on it if you need to talk to them and attached the canula to a spiral tube, they retreat into an office you cannot see as you are facing down and the massage bed moves up and back into the tumble drier.  The radiographers spoke to me and told me what was coming next – 2 scans without the dye, 4 minutes, 3 minutes “you are doing well”.  It was slightly claustrophobic because when I took a deep breath I felt my back was against the top of the tumble drier.

I had taken my favourite CD, Graceland by Paul Simon and thought I’d be able to sing along.  Unfortunately, I could not hear it over the “cludunk, cludunk” of the machine. It was warm and strangely relaxing, I just counted the “cludunks” and it appeared to me that these went in a circular motion around me.  I didn’t drift off to sleep and it wasn’t a terrible experience.  I was glad when the dye went into my arm and the longer scans were complete as the noise was more intrusive.  The process took about 40 minutes and as the massage bed emerged, the spiral tube was disconnected, I pushed myself up and took myself back to the changing room.  I did ask if I could see the scan but that wasn’t possible – reading Maps and reading scans are not the same. MRI done…. Despite being relaxed I felt shattered, Nick drove us home and I went to sleep.

Tip:  Expect to feel tired, it is the emotional stress of it all – being in a new environment, not in control.  Be friendly, smile at the staff as you don’t know what they too are going through.

7. Stepping onto the NHS conveyor belt

Time seemed to be measured by the intervals between NHS letters.

The next letter arrived and we returned to the Primrose Clinic and checked in, it was a school day and I wore my armour i.e. school “uniform” suit, name badge, lanyards, school bag… I was determined to be seen as more than a cancerous breast.  Soon enough Nick and I were called in and met a female surgeon and a different breast care nurse.

The dynamic of the office is interesting as the surgeon sat opposite me, with the breast care nurse to one side and Nick next to me. I think this is so the surgeon can talk to you directly whilst the breast care nurse makes notes and listens to your responses. I was all set to ask all my questions and the patient surgeon suggested it would be better if I listened whilst she explained what sort of cancer had presented.

This allowed me to tick off all my questions and breathe a sigh of relief.  The cancer was oestrogen positive which was one of the “better” types of breast cancer as it was the least aggressive.  ER+ and HR- became part of my new vocabulary.  I was asked if I was interested in a reconstruction as the mastectomy was the option to get rid of Grade 2 Invasive Lobular Cancer. This is a particularly sneaky form of cancer which develops in the milk lobes and is tricky to see on a mammogram and often doesn’t present with a lump.  The surgeon examined me.. no lumps, no evidence of breast cancer.  This cancer now had a name and a grade, this made it easier to investigate online. Thank goodness for early screening, thank goodness for the radiographers doing a great job, thank goodness…  I felt very fortunate in an unfortunate situation.

The breast care nurse explained more and gave me reading material including a practical guide to understanding breast cancer written by Mcmillan cancer support and a guide to breast reconstruction written by Breast Cancer Care.  I was warned that “the internet is not your friend” but I felt knowledge was/is power and the more I knew the more I could prepare myself for any eventuality.  My frustration was that no one could give me a time line.   A hint of impatience again.

In teaching we measure time by hours with a class, by half terms, by assessment cycles – being treated for cancer doesn’t take account of this nor does it care if you teach all exam classes which I do.  I didn’t feel I had time for this disease and more importantly neither did my GCSE and A Level students. I have a great job on the leadership team, worked as part of the teaching and learning team, had introduced coaching as a way of improving outcomes for students with fourteen trained coaches. Breast cancer was not on my “to do” list for the 2017-18 academic year. Unfortunately, it became a priority.

We visited my parents on the way back which was hard.  My dear dad said something completely innocuous which I flew at and then started to cry, my lovely mum then said she wished it were her and not me.  Even when you are in your 50s your parents want to make things better.

Tip: Do bring a list of questions, listen carefully, take a friend/husband/partner.  Share your news with your friends, they want to know, and they want to know what to do to help. Keep working, keep things as normal as possible.  It is okay to cry, even if everyone thinks you are a “strong woman” and a “fighter” you are only human. Apologise if you have been unreasonable and taken things the wrong way.

6. Knowledge is power

The next ten days passed in a blur of school meetings, professional development, examination analysis, back to school business, new students, new timetable and I was so grateful.  If I was busy and it was business as usual as that meant breast cancer wasn’t at the forefront of my mind.  I’d spoken to our HR director who was kindness personified and raised an eyebrow when I said I didn’t want this to impact on my classes and job.  When not at school or doing marking or planning my homework was to devour everything I could about breast cancer.  I steered clear of blogs and forums and instead went for academic research papers.  I felt knowledge was power and the more knowledge I had the more control I had.  I put together a folder with a Breast Cancer note book and wrote a list of questions to prepare for the next appointment which came around within two weeks.

Sleep became very evasive during this period, I would work hard, go to an exercise class and try to exhaust myself but the moment it came to trying to sleep it was impossible.  Sleep tea, embargo on using electronic devices after 9pm, warm bath… nothing seemed to work.  Once the lights went off my mind went into overdrive.. what sort of cancer, what sort of treatment, what if, what if, what if? It is the not knowing which keeps you awake with a big pinch of fear.  I was also incredibly angry… I’d done my best to look after my body, how could it have let me down.

About this time Victoria Derbyshire’s book was published and kept popping up on my Facebook feed… “Dear Cancer, love Victoria”.  This made me even more angry but why?  I’d never met the poor woman, I just knew she was a journalist and had cancer, why did she call it “Dear Cancer” it was an unwelcome visitor in my house.  I named my notebook “F*ck off cancer, I don’t have time for this crap”.

Tip:  Be selective about which websites you use.  You are allowed to feel angry even if it is directed in a completely unprovoked way.

5. Who,how and what to tell.

Once home I had to think about who to tell, how and what to tell as I had breast cancer but no idea about what kind or what was going to happen next.  All I knew is that I was on the NHS conveyor belt and the next stop would be the histology report in about ten days.

Telling people is an interesting one to ponder.  I had mentioned to some girlfriends that I had been recalled and like me, they thought it was nothing to worry about.  I decided that I would tell my parents in person, phone or skype the kids as they weren’t in Plymouth and send texts to friends.  A particular girlfriend had had cancer several years before and phoned immediately so we could have a good cry together.

My stance was that the more people who knew about this the more could help both  Nick and me, I didn’t know what sort of help we’d need but any would be welcome.  I emailed my head teacher, and she phoned me back within minutes, it was the last day of our school summer holidays and she was spending quality time with her children, yet she was so supportive and kind. You find out quickly who is rooting for you!  Kindness becomes a recurring theme.

Tip:  There is no right or wrong way to tell or not tell people – you have to do what is right for you. Tell your workplace as soon as you can as you will need time for appointments.

4. The impatient patient is born….

The shock of the “C” word hits and suddenly a rational, fairly sensible person becomes a gibbering heap.  On hearing those words “cancer” and “mastectomy” my mind went into overdrive.  “No, no, no, some sort of mistake surely” .. at that point I told the room I would need to swear and did (F*ckitty F*ck became a favourite) and tears appeared and ran down my face.  This was not the outcome I had thought I would have.  Silly things popped into my head.. surely I was too tall for breast cancer – I’m 5ft 9ins,  no one in my family had it, I had breastfed three babies so it must be a mistake, how would I tell our grown up children and my parents.  At this point one of the lovely breast care nurses came in, I sat up got dressed and started firing questions at her:  could it be one out (mastectomy) one in (implant), what next, when, what sort of time line… didn’t they know that I was back at school the next day and this was all really, really, REALLY inconvenient – I had meetings to go to, new classes to teach, my team of coaches to manage and lead, new A Level and GCSE modules to plan.  Breast Cancer doesn’t care about any of that and within the space of an hour the Impatient Patient had been born.  A cup of coffee, lots of tissues and a handout later and Nick and I walked back to the car.  The sun was still shining, Derriford was still busy, the buses were running, people were going about their business but I felt physically sick and scared.

Tip: If you are called back to have a follow up mammogram make sure you wear a top which is easy to get on and off.  Don’t be embarrassed as the medical professionals have seen everything before.  Don’t take their matter of fact attitude as unkindness – this is their role, they are the experts and they go above and beyond to help.  It is okay to cry, they have lots of tissues.