138. I seem to be on a roll...

This should be compulsory reading for anyone recovering from cancer treatment or living with someone in that position: http://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

Don’t panic. You’re not expected to read it but there may be someone in that position who’d like to read it, hence the link. Plus I show off that I know how to do a hyperlink. The gist for me is that everyone’s expectation is that, now treatment is more or less over, you just get back to normal. However, in addition to all the reminders like the frustrating side effects that linger and really want to put down roots, all the medication, exercises and check-ups which keep you in CancerLand, there is an additional factor which you can’t escape from - the possibility of it coming back. So the article is very reassuring about how to look ahead regardless. It needs several reads from me and maybe the occasional revisit as the next paragraph shows.

I had the strangest dream last night which didn’t feel at all out of the ordinary. I dreamt I watched my mother open a letter printed on beige/grey A4 (St James’s Hospital paper), her face drop and then she passed it to David, my older brother, who had a similar reaction.

Each time I passed, their voices would drop. Eventually I confronted them because I knew the letter was for me, or about me, as I was probably about 15 judging by their appearances. I was furious with them for keeping the truth from me and used all the usual arguments like ‘It’s my body’ and ‘You’ve no right’ but they assured me I didn’t want to know. Of course, I sneaked the letter from Mum’s pocket and they were right - I didn’t want to know. I woke up to C’s words in her email: ‘What’s read cannot be unread.’

This blog isn’t the place for analysing ancient family dynamics but it was good to be in a dream where I was the focus of the attention, albeit unwelcome/unfortunate, where I felt I mattered because I always felt invisible at home. It wasn’t so good to know that my dreams are reflecting that belief that cancer is going to come back. Where is my ignorance and numbness that stopped me thinking about this stuff? Where are my protective strategies? Where is my confidence that it’s only a disease? Suddenly it’s become a bit of a monster, occasionally with a paw on my shoulder. Let’s keep it that way - manageable.

I’ve almost finished the FutureLearn OU course on Start Writing Fiction. Ok, I’ve done it three times now, in fact it may be four, but I really needed it to get me back into creative writing. Last weekend’s Flash Weekender course was a real stimulus so I’m all guns firing, raring to go, champing at the bit - just showing I can write really badly. However, I am working hard at not using the exclamation mark so liberally (it is quite painful - I feel an ache in my palm as I hover over the keyboard - but, as with the bc, I shall conquer it).

Take off the beanie and this is so me and how I write.

137. Torture

I am mortified to report that the radiographer today said she wished she’d had a video of the faces I’d pulled during the mammogram. I have never had such a painful mammogram!! Martha was a lovely brute. She grabbed my boob and slapped it on the plate. The equipment is more advanced than at Wharfedale so the top plate was like a transparent Perspex instead of the usual metal - to lull us victims into a false sense of security. See-through? Can’t hurt. Huh!
“Just stand straight please.
Move a fraction towards me.
Now please move your hips out a bit
Stick your bum out.
Now lean in.” At this point she began twisting and squeezing my boob for the best image.
“Keep that shoulder back.
Can you get that shoulder back further?
Bum sticking out please.
Now chin up. Up further. Take it right back (yanking head like an assassin going in for the kill)
Hold on....”

Plates firmly clamping my poor breast to the shape of a pizza, off she trots to press the button. Thank god there was a release button at her desk.

Anticipation is a terrible thing sometimes and that didn’t help but I am NOT a contortionist. I know she wanted to get as much of the breast and axillary areas in as possible and I really appreciate that but my posture has declined a bit and, though Dennis jokingly has occasionally said ‘stand up straight,’ I am aware that my default posture is nowadays a bit protective of my chest. It could be because my shoulder muscle (apparently the rhomboid) is still sore from radiotherapy but mainly it’s just comfort. So I can’t get my shoulder back like I could.

I am getting old. However, I was sitting next to a real elderly lady (I guess 80 as she said she was 40 in 1979). She was there because her breast implant had sunk. I know it’s ageist but it never occurred to me that an 80yo would even have an implant, let alone want it replacing, but it seems in 1979, if you had breast cancer, they removed the full breast. Hmm. Mum only had small partial mastectomies around that time but that was the new centre in Guildford. Anyway, after no other treatment and a 5 year wait, she insisted on a reconstruction. Good for her. She actually said ‘I was still single. Who was going to look at me like that!’ I didn’t ask if she found anyone. 40 years on, her implant has ‘popped.’ And she wants another one. Sorry, I’m taking the easy route - just get rid of the bloody thing. After today, I wish I’d got rid of both! However, I shouldn’t joke about it - tempting Providence.

So now what? Days of jumping when the phone rings, heart lurching when the postman comes, a letter in “two to three weeks” according to Martha, two to six weeks according to the leaflet she pressed into my hand. I will start relaxing properly once I get the all clear. Then I shall remember I had the all clear 18 months ago and I wasn’t all clear... Lose/lose. Such a great mentality. I shouldn’t joke: I came very close to an anxiety attack yesterday - I think too much has stressed me this week but it’s a good indication that I’m returning to normal. Unfortunately, it’s an aspect of normal I’d have liked to leave in cancer land. I’ll opt for this:

Post Script: 2am anastrozole-induced insomnia (plus anastrozole-induced jaw ache) and I suddenly remember the word I was searching for this afternoon was “bottom.” That is not down to anastrozole as far as I know but perhaps residual chemo-brain and a touch of age. Poor Martha didn’t call my arse (in Dennis vernacular) my bum; she called it my bottom. It would have been quicker to simply edit but 1. It proves the long-lasting effects of chemo and 2. I can’t bloody sleep so doing this is better than just lying there. Ok, turn off The History of Rock n Roll, plug in some binaural beats and read Thirteen Bullets till I doze off....

136. In the dumps

Tomorrow is my 1st anniversary mammogram. Only half the discomfort is the bright side. But there are many downsides:

1. I no longer have my protective/defensive shield of Land of Denial. I can’t reach the damned thing. So I’m not turning up numbed to the experience with that just-get-on-with-it mentality.

2. I hate mammograms. They are heartless torture and torment.

3. I can’t leave and think little about it till I get the expected letter saying I’m ok for the next three years, or in this case 12 months. I’ve never had the heart-sinking moment of reading a callback letter so I’m ill-prepared for a protracted and anxious wait.

4. A quick response could be a call-back. Yes, it could just be a quick response but I’m conscious of the realities now. It’s going to be as bad receiving that unopened letter as it is having a one-boob mammogram.

5. Call-back is very common in these circumstances - they don’t let the slightest speck of dust remain uninvestigated. I know this. It doesn’t make it any easier if I do get called back. Every time the phone rings, every time a letter comes through the door, I’ll be feeling slightly nauseous.

6. Logic tells me nothing could withstand the onslaught of chemotherapy that treated my whole body, not just the area of cancer. The chances of a cancer developing in my other breast are small anyway. Logic is currently a tiny voice in a (slight) mess of anxiety.

7. My ‘heavily node-positive’ armpit puts me at much greater risk of a recurrence. I can’t even say it’s too early for that. What will be, will be. Thus speaks my common sense. WHAT IF...? screams my emotions.

Conclusion. There’s nothing to do but grit my teeth and hope for a swift letter that says all clear. Easily said, less easily done. I confess, I am a bit scared and it’s harder than a year ago when I had a lot to be scared of.

135. The good wife

Oh soddit! It’s 1.30 in the morning. My husband has removed himself to another room where he seems to be vomiting constantly. Bear in mind my phobia and you can imagine how supportive I’m being. We’re apologising to each other - him for upsetting me, me for being unhelpful! With his refusal to go to the doctors and compulsion to see everything in terms of cancer, things don’t augur well in the Brown household over the next few days. Plus it’s the weekend. How do you see a GP?? By the time I convince him, all emergency appointments right over in Guiseley will be gone. Plus, could I allow him in the car AND drive safely?

Today I started Day 1 of my Flash Weekender course. https://www.retreatwest.co.uk/flash-weekender

Two great stories to inspire us, illustrating the points they wanted to make and two prompts: a 500 word story based on a fight or quarrel we’ve experienced and a 400 word story based on memories. Ok, I can honestly say I have never been in a fight and have only witnessed pupils fighting in my whole life. No one fought when I was at school and I never went around with people who fought, not even at university, tho I believe Dennis got into a lot of fights in his Hall of Residence. Fortunately he’d grown out of it by the time I got to know him. As for rows, I’ve never rowed (except online). I might get snide or bicker but I walk away from unhealthy argument. Can’t handle it. Dennis and I never row - how can I row with someone who knows he’s right and just smiles? Maybe a row will break out tomorrow when he refuses medical aid (I didn’t mention the pain under his ribs). Eventually I recalled a brief but spectacular row my brother had with my dad, embroidered it a lot and had a story called Sunday Dinner. I posted it just to get rid of the damned thing after reducing it from 750 to 500 words. Editing is a painful process.

Story 2 is A Shop to Remember. Memories for me are usually painful and I tend to see it from a negative perspective, No way was I going anywhere near my own memories. So I created almost a fairy tale (in the Grimm Brothers’ style) about a shop where you could, for a price, dump bad memories - with a caveat emptor: everything in the memory was permanently obliterated. People didn’t listen and left with no idea who they were - but they were happy. Hmm. Not a price I’d pay, I think, though I’m being tested to the limits right now. If only he’d fall asleep!!!

Thursday (is it only a day ago??) I popped in to see Liz and get advice on my burgeoning chemocurls. I could see she was itching to snip off the long bits, the original survivors. I’ve felt they’ve deserved appreciation but I could see her point and I was beginning to look at bit Hobbity (in my opinion) so I let her snip and asked her to cut into the curls to relieve the thickness a bit. Result: a huge smile, a huge hug and a very happy bunny with a hairstyle that looks deliberate:

Do you think I might sleep if I shove my head under a pillow?

134. Carry on camping

I’m beginning to understand this cancer thing. I call my blog “It’s only a disease” and I still believe that but I’ve spent a lot of time mentally pontificating on why we’re all so terrified of it, why we immediately associate it with a poor prognosis and a painful death but we don’t react in the same way to other diseases that can kill us in an instant.

It was a shock last weekend to confront my original diagnosis and no amount of reassurance, from myself and others, removed my visceral reaction. My struggling-to-survive intellect said one thing, my emotions another. I emailed C, my breast-care nurse, to confess my stupidity in Googling at 2am, I rang the Breast Cancer Now helpline on Monday to talk to a nurse, I talked to Kiera Sunday, I talked to Judy Wednesday; so here I am a week later later with a slightly less visceral reaction. However, it’s achieved more by avoidance than by rationalisation and acceptance. I know if I’m to move on, I need that latter.

I got through the last year in Land of Denial. It was a smart strategy that got me achieving a load of firsts and it served me well. But as the months progressed, I became aware that it was time to emerge and time to face what others face right at the start. Personally I think they make their lives more difficult and more fearful just when they need all their resources to cope with treatment but that sounds a bit smug considering you couldn’t have got more fearful than me - I was just afraid of different things.

Kiera repeated almost exactly what Den had said: when you start studying statistics, you are presented with data and you use it to prove both sides of a theory, showing that statistics can be used and abused as Mark Twain maintained. It kind of helped. The Breast Cancer Now Helpline nurse tried to reassure me but I could tell she was reluctant to tell me to ignore the initial diagnosis so I can’t say I felt much better. Then I got C’s reply to my email, reiterating her ‘lecture’ on statistics at our meeting on Friday. Interesting that it reassured me on Friday but not later, even though nothing had changed except the addition of one word to my understanding: poor.

C wrote “You’re wellness might be as long as it was ever going to be without cancer. Somehow you have to find a way of not letting what might happen tomorrow spoil your today. How do you do that? When well, enjoy well - put yourself in the most comfortable camp Jan. Which camp have you put yourself in just now? Yes, it’s coming back or no, it’s not. Or could you manage ‘well, it’s not there now so let’s enjoy camping.’ Of course, it might not be as simple for you now, you might jump between camps. Time is a great healer. Fear can be used in many different ways and many of them positive. No magic answer for how you feel...”

I love the idea of camping, of having one foot in each camp, of moving between the camps as my emotions require. So I guess that everything has helped me. There is a chance that the cancer may come back. There is a chance the cancer will never come back. The chance of the first is greater for me because of my original diagnosis but that still doesn’t mean it will come back. In the meantime, till I get my head round it or let time work its magic, I’ve booked an aromatherapy massage at the Haven for Tuesday, following my usual reflexology and reiki on Monday, so I’ll be completely chilled out. Later in the month, I have an acupuncture session booked (think it’s the same week as my mammogram, which I am not looking forward to, half the trouble or not) and am expecting great things from that.

Meantime, rather than bore you with the continuing saga of the building site, here’s something to make you smile. Yes, Dennis and I did rifle through debris to find the best, though quite why a 71yo and 68yo want conkers mystifies me. Maybe the best bit was being asked if it was true people used to put string through them. So here’s a bit of ancient history:

133. Space

In the good old days of teaching PSHE, or SPC as we’d been calling it for decades (Social, Personal and Careers, the new head being so ahead of the times), I used to teach pupils about personal space and how important it is to respect people’s personal space. We’d do the exercise where you stand face to face about 3 yards apart and then I’d chat away to the girl who volunteered and keep taking a step forward until she leant or stepped back away from me in horror. Invariably the result fitted the ‘keeping someone at arm’s length’ theory. Apart from this being entertaining for all but the poor volunteer, it served an important purpose for me - I’d taught 13 to 18 year olds and, in 1992, Leeds scrapped middle school and we had an influx of 11 year olds who’d come straight from primary schools where they received hugs from the teacher and would run up to the teacher in the playground and take their hand. Imagine how it was for me, a person with the personal armour of an armadillo, having to deal with these little creatures who would bring their work up to my desk and press themselves against my chair or my arm for reassurance. Hang their needs, I wanted to swot them away like annoying gnats.

Hence the lessons on personal space. I think the only person I allowed into my space was Dennis (wow, I allowed him?? Rephrase that). The only person who was part of my personal space was Dennis. I never hugged my friends. When they did a goodbye hug, I stepped away and left them all to it. I’m not sure when it changed - probably when I moved to work for Education Leeds’ Health team and became more confident, more sure of who I was and what my role was. People hugged, I hugged back. I learnt about social hugging and emotional hugging and learnt to feel at ease with it. Of course, it left me in a dilemma - I had colleagues I hugged, yet friends I didn’t hug. It took a long, slow process to move me into the hugging my friends mode of thinking and I still have friends I wouldn’t dream of hugging. Maybe they too belong to the Arm’s Length Brigade.

This is taking a LONG time to get to the point. I went to the hospital yesterday for 2 appointments, 12pm with C, the breast care nurse, and 1pm with D, the rehabilitation physio. So simple but, as usual, not to be. We got home at 4! Anyway, in the long wait sitting in the wrong breast clinic, I spied T, my adjuvant oncology nurse, at the reception desk checking her next appointments, so I sprung up and hovered till she was free. Then I thanked her for getting me through what had felt impossible at the start, all the support and encouragement she’d given me and the validation when I felt so awful. Yes, we ended with a big and meaningful hug which I initiated (!!) but, at the beginning, as soon as she recognised me, she exclaimed “Look at you!” and immediately started stroking my hair, ruffling it and exclaiming over how lovely it was, how she’d let herself go grey if she could be sure it would be my colour. I returned to my seat, Dennis grinning and me feeling like I’d had a bit of closure but feeling completely natural, no invasion of space at all. I guess I’ve been through a lot with T so it all felt right.

Maybe a slight exaggeration but close :) 

Then I had physio (OUCH). D got me stretching beyond the pain; she even massaged my noob - but I was so glad she didn’t discharge me - she’s not written me off. (Actually, it looks like she needs clients to keep her in work - I’ve never seen anyone waiting to see her!). After all this, we began the long mystery tour to find C, who was certainly in a breast clinic, only not that one. St James’s is a maze. We should have asked for directions but no, I knew roughly how to get there so we ended up in lifts, dirty stairways and dashing through the pouring rain to eventually settle for a cardio clinic (my heart was beating so fast I might well have become a patient) where the receptionist kindly told us exactly where to head. There’s actually a short bridge across on the floor above, which we used on my midnight tour of the hospital in February but I forgot. C was ready and waiting. We had quite a long session with me asking a load of questions that I’ve long put off. As we parted, she repeated how proud she was of my achievement (yes, probably said to all patients but it still means a lot) and then said “Is it ok for a hug?” So again I was wrapped in the warm embrace of another of my life-savers, this time the one who’d convinced me that I could manage chemo, maybe take a risk and definitely do it at St James’s.

Later, Lisa came round, all fired up about the building that’s going on and the probable cock-up by the planning department that may mean Miller Homes have to revise their layout. She wants me to go  with her to her meeting with the Chief Planning Officer next week (or soon) for moral support. Once I would have done a lot of anxious mental calculations before agreeing but nowadays I’m finding it easier to take ‘risks.’ As she left, another giant hug. That’s a lot of physical contact for someone like me and it felt a little overwhelming afterwards, in a positive but slightly puzzling way.

I then ruined the day. I left C feeling reassured, having got the answers to all my questions. It didn’t seem to matter that most answers were of necessity vague - statistics prove very little in the end. You could have a 98% chance of dying but be in the 2% who keep going. You might have a 98% survival rate but find yourself in the unlucky 2%. It made complete sense to me, in my let’s-brush-the-fear-aside way of thinking. Then, in the early hours of the morning, when my judgment was poor, I again broke my rule and I googled. As we’d looked through my diagnosis after surgery, I’d asked what NPI stood for. Nottingham Prognostic Index she said - and moved on. I didn’t ask what my score meant. It nagged at me so I googled. I wanted to cry so I googled some more and it was infinitely better but my mind keeps harking back to the first thing I read. My score = poor prognosis over 5 years. It’s not surprising I switched off from cancer and just got on with chemo. How can you deal with an emotional assault as well as a physical assault? Well, people do but I softened the edges a bit by blocking out the emotional bit. As someone said, never mind the hurricane; focus on riding it out and rebuilding afterwards. Spot on. In case you’re now anxious about me, further reading on the Royal College of Surgeons site and another equally reliable source (I’m not that daft) explained that the score relates to the position after surgery and you then have to factor in the impact of each treatment, of which I have four. So my odds become good.

Why do I hold onto the scary bit? Today I feel much like I must have felt when told I’d need to have chemotherapy. I can’t recall how I felt. It involved some numbness and a lot of fear about my phobias. Just how stupid can you get, ignoring sound advice you yourself give to others to ignore Dr Google? I’ll ring the Breast Cancer Care nurses on Monday I think. Just for reassurance. Hopefully the slightly sick feeling and the urge to cry will have passed by then.

132. Oh dammit

Ok, moan time. Yes, I know I do it a lot but “it’s my party and I’ll cry if I want to.” That’s my age given away in an instant. 68 if you don’t know. Where was I? Moaning.

Moan 1. My eyelashes. This is utterly cruel. A false Spring with a flush of thick, lush lashes, top and bottom, more than I’ve ever had. They fell out as the natural growth process returned but I still had good enough eyelashes. They have fallen out, leaving me with the odd spiky lash, like as chemo progressed but with yet another growth spurt of thick stubby lashes. When will they settle. Yes, it does matter a lot. My eyes are really the only thing that’s left of my original good-enough looks!!

Moan 2. Article today in the i about some revolutionary new treatment to reduce deaths from sepsis (a vit C drip). I read on about how sepsis develops and what it leads to and thought ‘I had sepsis.’ At the time, no one mentioned it and I didn’t even feel ill apart from the lack of sleep and any bowel action. I felt cross and cranky but never anxious or fearful. But the cancer crisis is over now and I don’t, metaphorically speaking, have to have my hands over my ears yelling la la la la la to the world because I just didn’t want to know. Now I know and suddenly it hits me, the danger I was in. And I feel a frisson of fear. I can deal with that.



Moan 3. I’m driving up Holt Lane, one of those narrow windy lanes where you have to pull in to let cars pass or lose your wing mirror. I slam my foot on the brake (yes, correct pedal this time) when a car hurtles towards me out of the blue and avoid a scrape.

Bit of exaggeration

Only I have a tiny flashback to my car accident and I’m left driving ultra carefully, like a learner, conscious that every passing car can be a threat to me, every parked car is a potential hazard and generally I don’t feel safe. Add to that the fact that I nearly bit my tongue and my mind starts off on what ifs and I’m getting wound up over the possibility of biting off my tongue. Come on!! Pull yourself together. But this is how I am when I’m driving now, always conscious of rectifying the faults, always thinking about which pedal my foot is on, never just driving, relaxed and confident I do it ok. Solution? Practice. And more practice. But meantime, more fear.

Conclusion: I pushed so much away while I inhabited Land of Denial and now I have to face these things because obviously they are all queued up, awaiting my attention. This is not going to be easy.

Moan 4: This was yesterday. Heavy rain + an artificial mountain dumped beside our house = a recipe for disaster. It wasn’t as bad as it could have been - the house wasn’t affected - but we had a little brook running from the field and down one side of our badly-neglected garden. It tried to go straight through our garage so whatever is stored in loads of cardboard boxes is now one soggy mess but I’m not even going to look!

  Well, it was asking too much for me to be able to introduce a video to my blog and, sadly, you will not hear my shoes squelching across the lawn or hear My Voice (or even the voice of the window-cleaner, who I swear, had ankles as wide as my thigh) but you will see the sodden mess of a flowerbed. Exciting eh? Anyway, the site manager has visited, exclaimed in horror, dug a channel on site to prevent it happening again and is going to raise the matter with good old Miller Homes who, no doubt, will blithely ignore the matter.