131. Oh, a life on the ocean WAVE...

So here we are, exactly one year on from the cancer diagnosis. We didn’t celebrate (do we ever?) but of course it has me thinking. 12 whole months given over to breast cancer and its barbaric treatments. I certainly didn’t predict it would take so long and, of course, I naively assumed finished meant over and done with. No chance of that. I already have my appointment for a mammogram in 4 weeks’ time, 12 months after my mastectomy. I can’t imagine any rogue cells could have survived the onslaught of chemotherapy and radiotherapy but who knows. I guess I will approach these annual checks with a degree of pessimism, even fear, as I wait for the results. However, how can anyone have faith in the accuracy of a mammogram when my 2018 routine check was deemed to be clear? At that stage, I must have had two tumours and a few lymph nodes infected.

So, onto the title. Chemo-curl has struck with a vengeance. I remember my mum used to have these vicious hair thingies that created waves. David and I used to play with them and trap our fingers inside. They looked like a dark version of Jaws, only we didn’t yet know that! The end product was this kind of thing:

Now I’ve been struck. Hair that lies to the left now grows to the right. Hair that falls down now grows upwards. I have waves across the back of my head and curls round my ears. I have a Tintin on the top of my head: a wave that then curls upwards. I have to keep running my hands through my hair to keep a casual mussed look instead of a total prat look lol.




Here’s the proof:

I know it’s vanity but I feel like a kid again, too aware of what’s not right about my appearance. Only aware, I don’t care. I’m more amused than anything and fortunately it feels gorgeous, just like stroking Kiera’s Maisie! A cockerpoo - horrid name for such a cute dog.

130. I am officially old

Well, I knew this because I get letters from the Older People’s Service CMHT giving my psych appointments for my medication and I know primarily their work is with patients with dementia. Please spare me that fate - I have 10 years of endocrine therapy (anastrozole) and that’s bad enough.

So how am I officially old? I just applied for a Blue Badge. I learnt at the end of my cancer treatment that I was entitled to a Blue Badge - a bit late but apparently it is still possible to apply. It wouldn’t have helped earlier anyway because it’s specific to a vehicle, I think - though why did I have to submit a photo for my badge?? There were firm guidelines about how much shoulder had to be on show (I may fail on that one because I cropped mine to remove a wonky chest - probably my extended arm for a selfie!) and it had to have a neutral background and no shadow on the face. It didn’t say about glasses but I thought I’d better leave them off.

Blue Badge mugshot

Anyway, I applied on the grounds of agoraphobia. This has been a long time coming. Australia allocated BBs to people with agoraphobia decades ago and it made me angry that the UK discriminated against people with mental health issues. Being afraid to walk further than 5 minutes from the car is disabling but it wasn’t considered a disability. Hopefully that will change now. This is no guarantee that I’ll get a badge of course but it’s worth a try.

Tomorrow I have the dentist. They have a tiny car park so Dennis has to come with me and help me park this new car. It’s really hit and miss as to how well I’m parking right now and spaces there are tiny. Maybe ‘hit and miss’ is not the best term to use in the circumstances but... Anyway, I am seeing a Dr Nixon who has specialist knowledge of the effects of cancer treatments on teeth and mouth. Maybe he can explain why my upper lip stretches and I look like one of the Bash Street Kids!

Guess which one

Meantime, I have formed The Nefertiti Club, a closed Facebook group for people who, like me, get mighty pissed off occasionally and have nowhere they can rail and rant against the disease and, worse still, the treatment. There is only 1 member (rofl) but I am trying to recruit Wonky from the breastcancercare forum as we are very much on the same wavelength and we each have our eye on a few people who post on the forums and you sense may be ready for something like this. Unfortunately Wonks is less FB-savvy than I am so we’re still struggling to get her into the group! Small steps. There’s no rush.

129. Where did the year go?

I’m somewhere in the middle of my breast cancer anniversaries and remembered them all wrong. Yesterday was the anniversary of “I don’t think there’s anything to worry about” so I’m not quite up to the Cancer anniversary (next Friday). Nevertheless I have to wonder where this year has gone??

This time last year I was just trying not to touch my very sore boob (after the two biopsies on the left areola), never thinking that within a few weeks, the whole thing would be gone and I’d be introduced to a rollercoaster that left me battered and bruised, flummoxed and fearful (oh I like the alliteration here). I had no real worries, had stopped worrying I might have breast cancer and basically just wondered what came next?

Now I find myself reading near-hysterical posts from women who have just been diagnosed, or just learnt they have to have chemo and I’m ladling out sympathy and pouring out advice like an old hand. Yet I’m still not recovered. Just how long does all of this take?

1. I still need my prosthesis (out of my hands)

2. The radiotherapy pain is still stopping me from doing my exercises. Pregabalin has great side effects but hasn’t touched the pain. Hopefully Dr N will up the dose next week - but then I won;t be able to drive again.

3. The radiotherapy is healing so I have an unreachable itch in a boob that has gone. There’s no point trying to describe how ugh that is - but if it’s healing, that must mean the pain will soon ease. Please?

4. I still don’t ‘know’ my diagnosis. I can identify what most of the codes mean but not the ratings eg. ER6 and ER8. I use that example because it changed between letters. E is Oestrogen and R may be receptors but 6 and 8 - all I know is the score is out of 8 and one hopes for 0. I had PR0 (progesterone wasn't a factor). Looks like oestrogen was a big factor then.

5. Yesterday in therapy I read aloud each of the letters, put rings round what I don’t understand and then worked out what questions I now need to ask- questions I might have asked along the way but Land of Denial beckoned. Now I no longer need that buffer, I’m ready to face the truth lol.

6. I’m plagued by CIPN (cancer-induced peripheral neuropathy). It’s not severe, thanks in part to the medical herbalist’s concoction I massage in nightly, but it’s inconvenient. On bad days, I can’t feel the tips of my toes. No problem till I needed to balance in tai chi. No toes? Forget it!

7. I hate the other side effects that I’m beginning to believe stem from the initial EC treatments, since that’s when I first noted down numbness in parts of my body. I stopped EC in FEBRUARY. Surely it should have gone by now? But my upper lip swells and stretches and does peculiar things, my mouth goes back to being someone else’s and I talk like I’m drunk!

8. My saliva problem still isn’t sorted, again started with EC treatment. As for my gums, they are so shrivelled I’m surprised I still have teeth. Seeing the dentist Tuesday to discuss the zometa infusion and whether it’s safe to continue (I’m hoping he’ll throw in for free some help for my poor mouth). At 70 quid for the consultation, I think he should!

I could go on but even I’m bored!! Sorry about this - and I haven’t touched the psychological side. I’ll save that joy for another day ;)

128. Still in the Nefertiti Club

There are two members now, and possibly a third, recruited from the breastcancercare forum. This may grow into something...

Sadly, I’m still stuck with the one ‘tit’ and the knitted knocker (though I am advised to request a 36B or C next time! Seems like I underestimate my chest but decades of AA cups and a fitter who says “32, closer to 30” don’t do much for my breast ego). See 2018 post 3 if this all seems gibberish to you!

Today’s visit to the prosthesis clinic was like a scene from a Victoria Wood sketch. She’d have had a field day. Last time, it was just F and me sorting through a range of chicken fillets and concluding that I needed something in between what they had in stock. Today, there was an additional prosthesis support worker T - and only one of the requested boobs, unfortunately not the one I wanted. T fussed around, offering all the alternatives and talking over poor F - it was a real case of power politics with only one player. T decided what was right for me (I didn’t agree) and was ordering F to note down her decisions, while F was writing down my preferences. I had to suppress the giggles. Meanwhile I have a stock of useless photos of me and my bra filled with various prostheses, but no one thought to make a note of which was which.

No, I’m not posting them here.

I shall be receiving my prosthesis direct from the supplier via the postman. At my age, you don't have to wait for puberty and the right hormones - the postie does the job. Given F’s confusion and T’s determination to be right, I suspect I’ll have to trek back to the clinic again to ensure I have a balanced chest, with no risk of my bra slipping into unfortunate positions. It can’t come a minute too soon. I’m fine with just a vest and one boob (the Nefertiti look) but the knitted knocker can’t be relied on - in tai chi, even my ‘specialist bra’ was misbehaving. I’ve just been struck by a brainwave - find vests I can fit my kk into, ones with reinforced chests, like the sports ones. Then I can loll about and present myself in public without worrying I’m disconcerting anyone - and I can save the vast, specialist bras for when I need to go out.

Meantime, I just manage as best I can, with the focus on comfort.

127. Trichological issues

Hair is growing fast and furious, in quantities never experienced before. It’s like, having been denied four months of unimpeded growth, it’s making up for lost time, drawing on reserves of energy stored up during the no-growth period. My face has a veritable halo of soft fine hair that I’m desperate to be rid of but there’s too much for electrolysis (which I couldn’t do anyway because of the neuropathic pain), too fair for laser treatment and my skin is too sensitive for depilatory cream. That leaves one of those facial razor thingies but I’m blowed if I’d know where to start - let alone where I’d finish!!

Maureen warned me about Chemo Curl. I didn’t remember anything remarkable from her experience so I wasn’t convinced it would happen, especially as I didn’t lose all my hair. I’m now convinced. It started in the garden last week when my legs were in the sun. I noticed some new-grown leg hair that was literally corkscrewed. It wasn't a one-off. I’d say at least a quarter were in that condition or, worse, were ingrowing! I’m playing a waiting game now, I find it both fascinating and hilarious. What will it do next??

Then I noticed a ridge when I stroked the back of my head (as I’m wont to do right now, so delightfully soft it is).

Not a great photo - it IS all hair, not baldness and it’s actually white - see evidence from Dennis below

Within a couple of days, it was a few ridges and M confirmed on Monday I had a case of the Chemo Curl. It’s spreading across the back of my head and I wait with bated breath - will it attack the sides, the top? Will I end up with a frizz like Annie (of the musical)? Will I have a quiff like Tintin and have to brush my hair like those poor new mums desperate to create the semblance of some hair on their infant’s head? At least I won’t need a ribbon as there is more than enough hair there already. I’d look like some poor lapdog.

At least it’s pure white at the back

It hasn’t decided what colour it intends to be at the front. I have dark patches and in some lights it looks a creamy blonde colour - no sign of my lovely silver white - yet at the back, it’s exactly what I’d expect. Well, there’s been lots of little surprises along the way so what’s another one!

Talking of little surprises, pubic hair, notorious for its curl, is of course as straight as a die. What’s more, some of it is blunt as though it’s been attacked by scissors! But its presence is so welcome I’m not going to criticise it or get picky! I’m peeing straight again. I wish I knew how to write wayhaay but I’ll have to stick to yippee for now (so not me).

PS. Anne’s friend was told she’d never have to wash her hair again after chemo - and she hasn’t, in 5 years. I’m still trying to work that one out....

126. Apologies to Shakespeare

Spoiler alert: this may make for very dull reading so skip if you want a chuckle or two. I’m having my new boob next Monday so that may be more entertaining.

To know or not to know, that is my question.

As you will know, I survived what for me might have been beyond bearing by retreating to the Land of Denial. This is what I remember (very rough quotes):

Consultation 2: Mr B, breast surgeon: ‘I’m sorry to say both biopsies have come back with evidence of cancer so we do need to reconsider our approach.  I have to say I’m more than surprised. I’m shocked and you must be too.’ Since I’d already said ‘Fuck’ after the word cancer, I just asked ‘What now?’ That involved a raft of uncomfortable, sometimes mildly painful tests and another appointment the following week. I remember Marilyn raising her eyebrows when I came out of the room and me shaking my head mournfully. Then they found us a private room till I could be fitted in the test schedule. I remember Marilyn giving me a warm hug and I may have had a tiny cry but mainly all I could think about was I’d have to have surgery and general anaesthetics can make you sick. Sigh.

How can something so pretty be so lethal?

 Consultation 3:  ‘All the tests have come back positive for cancer, including the three biopsies of the sentinel node. This is worrying. It does mean we have to forget about all the earlier options. You need a full mastectomy with what we call axillary clearance. At a later stage we can consider a reconstruction but that’s best left till after any follow-up treatment you may need.’ By ‘three biopsies,’ I’d said ‘Fuck’ again so I just said ‘I’m not bothered about reconstruction. Just do what you have to do.’ This time I’d taken Marilyn in with me. Why not Dennis? I hadn’t considered involving him at this point when it was all up in the air. Very inconsiderate of me but it still didn't seem to be a big thing. I remember Marilyn taking notes but the only questions I asked were about the potential for the operation to cause nausea or vomiting. I remember saying I’d be really grateful if he could arrange it so I could go home the same day and he said he’d do the operation around 8am. Turned out to be more like 11am but I still came home :)

               

Consultation 4: This time I had Dennis with me. ‘I’m afraid none of the results were good. We found two large tumours, the one under your nipple that you know about and another leading to the side...no margins...19 of the 21 lymph nodes were infected so you will need to have a CT scan to see if it’s spread from there and I’m afraid you will need to have chemotherapy and radiotherapy...” There was more. I was numb and said nothing. I don't remember if Dennis said anything but we did discuss the option of remaining in the private system or transferring to the NHS. After a vague indication of possible costs, D and I agreed we’d prefer to stay in the private system but at a hospital nearer to us and he said he’d arrange it. Then Mr B brightly said he’d see me in 12 months for my follow-up appointment. I remember wanting to laugh but I don't remember if it was genuine or cynical laughter.

All gone. Just scars and cording left to see - and the aesthetics don’t bother me one bit.

So, three consultations, some factual details, none of which went in but which were included in copies of correspondence to my GP, which I still have and, at best, have only skim-read, and many opportunities to ask questions I should have asked.
1. What type of cancer is it? What stage is it?
2. What does ‘no margins’ mean in terms of the success of the surgery/long term success?
3. What is the likelihood of the cancer having spread elsewhere?
All I could think was chemotherapy=vomiting. I was sore, in fact in pain, suffering from acute discomfort from the allergic reaction to the dressing and emotionally numb from terror at my equation

chemotherapy+Jan+phobia=nausea+vomiting+I can’t do it.

I just asked about consulting the oncologist at Roundhay!

Consultation 4: Dennis and me with Dr K, who wanted to know all about me before even talking business. This is the private system for you - they have the time - but I suspect he’d been alerted to my ‘quirk.’. Then came the facts of my cancer that went in one ear and out the other (apart from ‘it even broke out in your skin’ and I didn’t ask why the ‘even?’) and a look at the computer screen at the statistical difference each treatment would make to my long-term chances of survival. All those questions I should have asked. But I truly didn’t think I could handle anything else. Dennis viewed the statistics with a trained statistician’s eye and was scared shitless. As he’d said he would prefer not to see the stats and I overrode him, it’s not surprising he didn’t ask any questions as he didn’t want to scare me or himself. I remember his making a few flat comments, one of them a challenge to Dr K’s optimistic interpretation. I was completely focused on chemotherapy meaning unavoidable sickness and how on earth I could manage that. So Dr K followed my lead and focused on how chemotherapy had moved on and they could do all sorts now to make it as comfortable an experience as is possible in these circumstances. Then the question about what I had against St James’s and the suggestion that he arrange for me to visit both the private and the NHS treatment rooms and then make a decision (lots of warnings about how costs could soar from the basic £40k to the one insurance claim he’d signed that was over half a million).

I could go on and identify other opportunities where I should have asked questions but I was ‘happier’ in the Land of Denial. I do remember saying to T, the adjuvant oncology nurse responsible for me that it was a good job it did break out in my skin or I’d still be happy as Larry, ignorant of the disease spreading its nasty tentacles elsewhere.  T was always positive, telling me I was officially cancer-free very early on, referring to me as NED - but I didn’t see her towards the end of treatment. I saw Dr D who was more focused on moving me onto the next stages of treatment that she was in charge of - the radiotherapy and the hormone therapy. It was only when I joined the Breastcancercare forum online that I realised how well-informed most people were, how they knew what HER+ meant, what ‘margins’ were and stuff like that, that I began to think maybe I should know a bit more and now I have this urge to find out what I didn’t know before. Maybe it’s because I feel safe now - my tests are cancer-clear, I haven’t been sick or even felt sick (except with anticipatory fear) - and it’s time to understand the long-term prognosis. But do I want to know percentages? I fear it’s a bit too late now. The curiosity, maybe the need to know, is there and I’m not going to be able to push it down so it’s time to compose a list of questions and decide who best to ask. Scary? Come on, nothing can be scarier than what I’ve survived. Or can it?

125. Piano playing

In my head, I’m a virtuoso piano player (virtuosa?). I hear and feel every note in many of the pieces I listen to frequently. The fact that I had only two terms of weekly piano lessons in the first form, down in a tiny room off the smelly changing rooms, and was advised by the teacher to stop as we were getting nowhere is irrelevant when I’m listening to Chopin or Beethoven, even Simon & Garfunkel. My relief was palpable at the time and the insult barely registered. The fact was, my mum wanted me to have the lessons, we had a piano (she could just sit down and pick out a tune without ever being taught!), I didn’t practise till the evening before each lesson and then I had my foot firmly on the soft pedal in the desperate hope that it would silence the bloody thing so no one could hear me making such a fool of myself. We’d already paid David to give up his violin lessons (again, the first form - I contributed all my pocket money for the week, I was that desperate) so why think I might be more musical. Yet I was surprisingly good at Music, which we had as a weekly lesson, could do all the transposition etc and I loved being in the choir - I just couldn’t play an instrument. And this is one huge regret in my life. There’s a pianist bursting out but with no wish to lay a finger on a real instrument!

I was just pontificating about this while lying in the sun, wrapped in my woollies and reading in between cloud watching, listening to my iPod to drown out the builders who might as well move into the garden, they are now so close.

These are my views now, in both directions. I feel some glee that pretty soon they will be informed that they have covered our manhole cover with that mound of soil and will need to shift it all again till they find the bloody thing. We have yet another drain-man coming Monday and he will need access. Heigh-ho.

I’ve been reading a piece written by Angela in our Facebook writing group. I hadn’t realise we were going through the whole cancer thing almost simultaneously so here I was reading a piece about the impact of treatment, rather different from my approach but bringing up the same issues like vanishing pubes and eyebrows. Her emphasis was more about how her husband perceived her and her sense of femininity I guess - I say her, I mean her main character of course. I wasn't sure I could respond neutrally but it was in the Feedback Forum so she was inviting critical comment. It did send me straight back into a place I want to leave behind, just reading things that I could so easily have written myself, though of course it was fiction. Can you fictionalise something so intensely personal? I’ve tried with a couple of short pieces, like the one on the Didcot website, but I can see me far too clearly.

Some people have suggested I should do something with this blog but I don’t want this blog to be anything but cathartic for me and ‘interesting’ reading for whoever is reading it. It’s too soon. I haven’t even asked my oncology questions yet! I must be the only breast cancer patient who doesn’t know what she actually had!

124. An extra few pounds...

Yesterday I went to be fitted for my prosthesis. I felt like I’d been let loose on the fresh fish and chicken counters at Sainsbury’s! I had no idea how much a boob can weigh - no wonder a couple of my friends get back ache - and how fortunate I’ve been to be less-than-averagely endowed for most of my life. Give me fried eggs any day.

Anyway, my noob apparently should weigh about 1.5 lb (I know you shouldn’t mix decimal with imperial but I can’t do a half on this keyboard!). So that cheered me up - my weight really is closer now to 7st 10, allowing for the noob.

I had to weigh them in my palm and consider the level of comfort, as well as be wary of the aesthetics. What the nurse (with frozen hands) thought was a good fit actually stuck out front at least a centimetre further than the other side! Then there were boobs that were far too perky, giving a one-up one-down effect which was not attractive. My problem is that I’ve always had a sideways not a forward kind of boobiness so I need something that doesn’t jut forward.

I came away empty-handed, or empty-cupped but for my knitted knocker, and have to go back to the next clinic, by which time F (that doesn’t stand for frozen hands) will have more for me to weigh up and, I hope, one I can wear with confidence and pride. I’ll spare you the images!

Last week, I popped over to Horsforth (you have no idea how good that feels just to write it - free to pop wherever I like now). There’s a specialist shop there for mastectomy bras with a good range. They are a bit sturdier than anything I have ever worn and rather high at the front - bang goes the casual flash of cleavage I only earned once I hit menopause - but they are very carefully designed and definitely fit for purpose. I was mortified to be told I was “32, well, closer to 30 but we only stock sizes from 32.” I did tell the assistant who measured me that the tape measure had been very tight but she insisted. I ended up with 34C which restored my self-respect and I bought a white lacy one with pre-formed cups and a ‘natural’ ordinary one which she said I could return after the hospital fitting but which is actually more comfortable so I’ll keep it. I’m back to my Asda bra for now - it’s way lighter and more comfy, even if it’s a lurid orange and tends to slip round in the absence of some anchorage!

Now I discover they are a lot cheaper online - no wonder the shop is closing down next month. That’ll be a huge loss to the bc community but apparently most people buy online now. Not surprising.

So, that’s that bit nearly sorted. One thing to cross off quite a long list but one further step forward.