68. A break?

I don’t know what I think right now. T, my adjuvant oncology nurse, has cancelled my next chemo session on the grounds that she feels I’m running on depleted resources. My ulcer hasn’t healed so it’s still hard to eat anything but the blandest stuff like porridge and it’s all tasteless. My weight is continuing to fall, very slowly but I can’t afford to lose any weight, and the mouth problem (mucositis it seems) is still deteriorating. The numbness comes and goes - my face was numb this morning but fine by noon. It seems the team has been anticipating problems, going by how the EC therapy affected me and the neutropoenic sepsis, so she wants me to see Dr U, the consultant, next Friday to review my treatment. She said she’d never heard me so tired and drained, even when we first met and I was riddled with anxieties.

You’d think I’d be happy with a break, even just a week. I don’t know how much recuperation I can achieve in a week but a break might be nice. But it feels like a failure. I got details today of my final chemo appointments, plus an appointment with Radiology, to have a CT scan in preparation for the radiotherapy. I have an appointment to be fitted with a proper prosthesis too. The end is in sight. Now it all has to go back to the drawing board and that elusive ‘I’m done’ day has become even more elusive. I was all set to revive my gym membership, perhaps just pop in for some gentle recumbent cycling, but if I end up having the remaining chemo sessions on alternate weeks, it will be July before I’m ready.

I have to say my morale is the lowest I can recall. I spent the afternoon reading in the sun and that felt good - then I had a cup of tea and it set my mouth off again. Even walking from the sun lounger to the house felt beyond me. Took me two attempts just to stand up balanced!!

Still, I reckon it will be sorted sooner than B*****. That’s even more depressing than my health and wellbeing.

67. This is what being bloody-minded does

Five weeks ago, Dr U told me I’d lose my hair in a week. Look at this lil halo of fluff. Bless. It’s still hanging on in there - either sheer wilful determination to prove him wrong or good genes. I reckon I will finish my chemo and THEN lose the lot. My surviving spider-leg eyebrows are giving in slowly, I can locate 5 lower eyelashes across both eyes (though I can’t hit them with the mascara brush, I keep missing) and my upper lashes are, shall we say, ‘sparse.’ 

However, explain this to me. If Paclitaxel causes ‘immediate’ hair loss, why have I spotted some new hairs growing on my chin? New hair growth is not meant to happen. So I defy the rule - why my chin of all places? That’s Nature at its most unkind. They say the new hair that grows is curly and sometimes a different colour. I just hope I don’t end up with a curly red beard.

And I still haven’t worked out where to look for a selfie!!

66. Steroid boo...

What a huge disappointment this week has been. It didn’t augur well when, after taking my blood test, Anne and I were told there was no space for me so we’d have to wait in the cheerless waiting room. Having only just managed to drag myself along the seemingly endless corridor, my heart sank but, with Anne laden like a packhorse, bags and coats for two, we got down to Costa and stayed over an hour. What a thriving trade they have.

Treatment didn’t start till almost 5! Then poor Anne had to go as one of the girls had been rushed to A&E and there was no way I was letting her sit holding my hand when she needed to be elsewhere. So I spent the next half hour trying to find someone who’d be available to pick me up sometime before 7. Steve to the rescue - I managed to catch him still at work so he hung around till I texted I would be ready for pick up in 20 minutes. What a treasure!

But almost FIVE hours for a 90-minute treatment!!

Yesterday I was all fired up for the steroid boost. Fair enough, I could walk without getting breathless and I could drive but where was the taste, the energy, the desire and need to DO something? None of the usual boost. We’d arranged to meet some friends for lunch but the only thing I could taste was the hot chocolate I ordered. I had a portion of tantrum stew awaiting me at home so I opted for just fries. Imagine chewing newspaper, that’s as close as I can get to the flavour. Ketchup - vinegar. Mayonnaise - nothing. And the tantrum stew wasn’t flavoursome either. Plus every bite was an assault on this bloody ulcer under my tongue, positioned perfectly to hit a tooth with any movement of my mouth. OW!

Today I have additional tingly-numb fingers and toes and my lips feel like they’ve been botoxed (I imagine) so the numb effect is getting worse. My mouth is very dry, which is preferable to yesterday’s excessive foam which could have filled a spittoon if they still made them (sorry). Nothing tastes except marshmallows (and what do they taste of anyway? Something vaguely sweet). I feel cheated. Please let it be a blip. Only 4 more treatments, hopefully on a Tuesday so I can go to Wharfedale Monday, get my bloods done and save them a few hours at St James’s. Better than all that hanging around and hopefully the 90 minute treatment won’t take up more than two hours.

Ok, moan over. I’m going to start my first FutureLearn course since September - Forensic something (good start Jan). It looks interesting and if it can penetrate the fug, great! AND I’ve secured a lift from a very kind book grouper for my next appointment, so that’s a load off my mind. Now I just need to get the dates of the last three (oh, the pleasure as that number gets lower each week) and arrange my transports and get hold of a breast care nurse at Wharfedale to discuss my proper prosthesis - so I can wear my nice light summery stuff without being lopsided. I’ve not given it a thought till now but I ordered a jumper from Jigsaw that definitely requires something a bit more delicate than a sports bra!

 I can never resist a dip-dye job!

65. Self pity is not pretty

Judy, my therapist, described me as a warrior in an email the other day. I replied that I feel like an automaton running on a rapidly-depleting power source. Cancer? Huh, can deal with that. Chemo? Huh, pimpsy (with the help of a little medication for confidence).

I am brought down by a mouth ulcer that gets bigger by the day and seems destined to hit my teeth every time I move my tongue. I am at screaming/retching point with my foaming saliva (sorry, not a nice thought but then it’s a pretty revolting experience). Add to that the complete absence of any energy (yes, I am eating reasonably well - for me - pain or no pain, taste or no taste) and I wonder how the hell I will get through the remaining 5 weeks.

FIVE WEEKS. That’s all it is. I can do it. But I need a plan. I can’t just wallow for the next 5 weeks. Last week I treated myself to

That, plus spotting my first lamb of the year (why do I always shriek?), had me set up for the week. It didn’t last, though the irises are doing fine. Better than I am, at least. Maybe I just need to stick my feet in a bucket of cold water and I’ll thrive.

So yesterday I made what I now call my tantrum stew. I needed D to cut the carrot as I just didn’t trust myself wielding the knife but I got the rest of the ingredients in the pressure cooker, fired it up to steam power and then sat down, drained. I ended up crawling up the stairs, collapsing on the bed and lying there thinking that, if that’s what ‘cooking’ does to me, what’s the point.

I have to say it was gorgeous - it looks pretty repellent but it tasted delicious, was filling and nutritious with its added baby kale and broccoli (which cooked away but I’m assuming some of its nutritional benefits survived).

And I’ve three more portions to get through. Guess what I’ll be having for lunch.

Chemo 5 tomorrow. Past the halfway mark for Paclitaxel and only a month to go. I need some fighting spirit and some physical energy. It’s no good saying I’m going to go for walk when I feel faint just standing up sometimes and I’m undone by throwing some ingredients in a pressure cooker. I’m desperate for a shower (and I have a shower seat) but I know right now I’ll end up with my head reeling, too weak to dry myself, let alone moisturise, moisturise and massage my noob before it completely seizes up. It’ll be interesting to know what my blood tests reveal. I’d say I’m anaemic or something but, so long as I can get through the chemo, that doesn’t seem to matter.

Ok, normally I’d say ‘Chin up, shoulders back’ to motivate myself - and find some chocolate. Let’s get tomorrow over, enjoy the steroid boost and then say “Only FOUR WEEKS to go.” I can do it.

64. Tantrum

I’m mortified. I’m not the most patient, nor the most equable person on this earth but I’m proud that I can present a controlled, relatively calm facade, regardless of inner turmoil. And that’s what I’ve been doing, to the point where I wonder if there is any inner turmoil. Maybe I am as phlegmatic as I make out.

This week (Paclitaxel 4) has been marginally worse, after the lovely respite I had on Tuesday. My tongue is ulcerated on the underside from so many accidental bites and scratching against my teeth as I grapple with a kind of numbness in my whole mouth. Anyone who knows me well knows a numb mouth is anathema to me. As soon as the steroid effect wore off, along came the saliva problem and away went my sense of taste. But I had a back-up plan. I would make more of my comfort food, my mum’s chicken and rice stew.

Since I’d mistakenly failed to order one of the few things I can still taste - broccoli - I drove off to the local Co-op and got what I needed. Meantime, Dennis roasted the chicken leg as I still can’t handle the smell of fat. I got home, mildly exhausted, and set everything out ready to make that stew - enough to feed me well for 4 tasty meals. Only, the food cupboard had changed. Where was the vegetable stock? I knew where I’d put it after last time.

Dennis came and had a cursory look and concluded unapologetically that it must have been one of the items he threw out while ridding the cupboard of inedibles dating back to 2010. Then I lost it. I pushed him to one side to look for myself (he wisely left me to it) and uttered a string of invective that could have made my dad blush - and that’s saying something.

                                              

I accused my poor husband of every kind of stupidity and ineptitude. I then flung the broccoli in the fridge, microwaved the most appalling mess of mashed potato and baked beans which I could barely taste, and went upstairs to sulk.

For want of a stock cube, I was reaching breaking point. I know the stock cube is unimportant. I know there was a lot of stuff needed throwing out. It was feeling thwarted when I had a positive plan to by-pass a problem that got to me. I’m still not eating enough and here was yet another obstacle. So I had my tantrum. (Later I texted Lisa to ask if she had a spare stock cube/pot and she came to my rescue - I'll make it later on).

Something tells me there’s a lot bottled up inside and I don’t have any outlets. Dennis, RUN AND HIDE.

63. The joys of steroids

I gave steroids a bit of a bashing the other day so here’s to the benefits, beyond their main purpose, reducing the risk of chemo-nausea. In that respect, it is very successful and, in my case, possibly a life-saver. Today I woke at 7am. I rarely see this time of day. I have never functioned before 8.30 when the demands of my job took over the natural lethargy I experience in the mornings. Today, I woke alert. I felt refreshed by sleep (even though I had a nightmare, unusual for me) and ready for anything. Then I remembered I’d had a steroid drip yesterday.

I proof-read a report. Texted a friend and arranged to meet at noon - this is just like normal life. Woohoo (however you spell it). Knowing I had pizza waiting at home, I opted for the most deliciously moist lemon and lime cake and enjoyed every mouthful. I replaced my usual tea with a hot chocolate made with oat milk. Heavenly. I had a lovely chat with Maureen about everything from Theresa May to depression and forgot the time.

When I got home, I spent the next hour chatting with Dennis and cooked (yes, from scratch) more stewed apple. Haute cuisine and my saviour last week when everything else tasted of...salt. Then it was countdown to 4.20 and the end of the steroid boost. Turned out to be 4.21. I sagged. My mouth started feeling revolting. Time’s up for the week.

It got better though. Pizza is another thing that’s defied the chemo-induced tastelessness. I left it to Dennis as his culinary skills surpass mine by miles. I thought.

WTF

Pizza rock solid, only about one salvageable mouthful from the underside at the centre. How can a man with top grades in Physics, Chemistry and Maths not work out that, if the oven is already heated from his own pasta dish, cooking time needs to be reduced? He’s always taken cooking instructions literally: if it says cook for 20 minutes, that’s what he does. He doesn’t test it to see if it’s cooked or heated through. Just eats it - how he’s avoided food poisoning amazes me. But I thought I’d been training him on this lately and he’s been responding because he wants to ensure I can find no excuse not to eat what he gives me. Conclusion: Yellow pepper - tasted like salt. Salad leaves - tasteless. Cucumber - yes, I got a sense of what I remember cucumber tasting like, pretty tasteless but refreshing. So basically, I had cucumber for my meal :)  

Then I decided a dish of tasty stewed apple would help, cooked by me, just how I like it. Result: almost tasteless, with a slight hint of clove. Half a dish is still waiting to be consumed but it reminds me of the time I had to eat boiled marrow. Three mealtimes: lunch, taste and refusal; tea, repeated refusal; breakfast, determinedly repeated refusal. Dare Mum send me to school without breakfast? 

Yes, she did. But she never served me boiled marrow again. Maybe tomorrow it will taste better - the apple, not marrow.

So the day began more than well, peaked around 1pm and deteriorated from 4. Dare I try another of my stalwarts, Heinz vegetable soup? It has so many additives, something must taste and I’m hungry! With my luck, it will taste of salt.

62. All the time in the world

FIVE hours today for what is actually a 60-minute treatment, preceded by 30 minutes protective stuff (antihistamine, anti-allergy, steroid). That is a lot of wasted time. The rest was just waiting to have my blood tested and then waiting for the results. I’ve nothing better to do but I feel bad for my companions. I know they don’t mind but it makes it hard to ask them if they are available.

Anyway, a practical solution has been found. After next Monday, I will be able to drive over to Wharfedale Hospital on a Monday (no queues) and then go to St James’s on a Tuesday for a two hour session max (assuming they have the staff). I shan’t feel so bad asking people to accompany me for that length of time but, timed wrongly, no more sandwiches supplied and possibly only one cuppa. Swings and roundabouts...

I can’t believe I’m almost at the halfway mark of the second oncology treatment. It feels unreal. It was quiet today though the nurses were stretched beyond capacity. Seated next to me were a couple and she was called Janet too so the nurses were being particularly careful. She was younger than me, her hair grown back thick and curly (which she hates and straightens) and a different colour. I guess we were a similar size - certainly she struggled to fill her clothes (but it’s great that such things are important to her). She has leukaemia. She had a 100% perfect match of a donor in her sister earlier this year  and had a bone marrow transplant. It failed. Now she’s trying a different kind of chemotherapy and it’s obvious she isn’t going to give up, even if it means going in several times a week.

It made me realise just how lucky I am.

Maybe next time I’ll whistle Always Look on The Bright Side of Life...

61. Practicalities - not for the sensitive reader

Ok, be prepared for a good old whinge today as I reflect on my daily difficulties. Chemotherapy is a bit infantilising. Not just in that sense of helplessness, knowing that you have to let others do what they damn well like to your body. It’s a good job babies don’t have the capacity to understand their vulnerability and regard it as nurturing. Well, sorry, but I can’t see much nurturing in all this. I know I’m not a baby but sometimes I feel like one and what I wouldn’t give for a bit of gentle nurturing beyond what Dennis can offer with his limited understanding of the female body!

Somewhere along the line, oncology takes over and simple practicalities get overlooked. Am I complaining? I don’t think so - I don’t want cancer to return and chemotherapy does its best to ensure that doesn’t happen. However, I’m in considerable discomfort and it’s anyone’s guess how best to deal with things.

1. Breast exercises. These are essential to ensure you don’t get a frozen shoulder and end up with a hunched back. I’ve been very lazy and smug, knowing I have a lot of movement in my shoulder and adequate strength in my arm. Generally I have good upright posture too. Serves me right for being a smug cow. What I didn’t allow for is the fact that one side effect of Paclitaxel is muscle and joint pain. Which muscle do I have it in most? My breast muscle, or what’s left of it. Of course. The area from my armpit down across where my breast used to be is one burning pain. Paracetamol doesn’t touch it. I daren’t use topical pain relief for making the skin more vulnerable, only weeks from radiotherapy. So I sit here (try not to picture this) massaging my noob as firmly but tenderly as I can, trying to ease the discomfort.

2. An inadequate lymphatic system. Oh, how we take this for granted.

My axillary system may have been severely invaded by cancer but that just shows what a bloody good job it was doing, blocking those little blighters from spreading elsewhere. BUT, what does one do when it’s been excised? I massage my arm from numb elbow up to my shoulder (never down, it  - whatever ‘it’ is - I imagine the raspberry smoothie gunge that drained into my bottle after surgery - has nowhere to go now). I sweep across my back, trying to get ‘it’ out of my arm and into a functioning part of my lymphatic system which I was told was somewhere in my back. Then I have to do the same from my inner elbow to my armpit, gingerly massaging the row of corded lymph whatevers that have nothing to do now but sulk and more or less have a sit down strike, hardening into a wodge of rather painful knots that must be massaged away. Only this time, the direction is up to the armpit and down across the breast muscle. Currently I am massaging pain away from one area into another equally painful area.

3. Who’s there to give advice? I was told in no uncertain terms that I didn’t need the Macmillan breast care nurse while I’m under the care of oncology. Wrong. I want someone to see me as a woman with a painful scar, not particularly bothered by the absence of a breast but still needing breast care advice.

4. Hygiene. I think I’ve got this sorted and then along comes another surprise. Peeing has been an experience and a half. No wonder they put babies in nappies. Women’s plumbing is not the best design but we take it for granted. Then something changes - complete alopoecia front to back in this case - and I’m peeing in multiple directions. Nothing so simple as point and pee. Nothing so simple as gravity.  No, it’s baby wipes every time as tiny rivulets spread across my buttocks in the most circuitous route the urine can find. I swear it’s doing it on purpose.  However, I can beat it at its own game now. A simple contortion rather than a comfy sit down almost guarantees a ‘dry run.’

5. Constipation. This was the bane of my life (the? One of many actually) during the EC treatment. Take 2 senna tablets at night. I’ve never taken a laxative in my life but desperation eventually broke the taboo. They didn’t help. Drink plenty of fluids. Not easy for someone who’s developed a swallowing problem somewhere along the line in bodily protest (actually a deep psychological response to what was/is going on in my life but I’m blowed if I can make sense of it). The 4 days of antibiotic drips resolved the problem but I spent many an unhappy hour speculating on the sheer stupidity of the design of our toilets. The human body is not designed to sit but to squat. Thin bodies like mine are not designed to sit for hours with a good book, numbed by solid plastic. I reckon someone could make a fortune redesigning our toilets for greater comfort and better health.

 Better idea?

Meantime, I did a simple yoga exercise, massaged my intestines in the appropriate directions, squatted with my feet up on the seat for as long as I could, cursed, tried to cry and almost cried for joy when activity seemed imminent. Too many false alarms taught me a harsh lesson. Now I know why my dad used to keep a book in the toilet! One good thing about Paclitaxel is that it has the reverse effect but, for someone with my bowel habits, it’s actually just ‘normal’ now. No moaning for a few weeks at least.

6. Skin. To my delight, chemotherapy had an immediate and positive effect on my skin. Bumps and lumps and agespots disappeared (as of course did the facial hair I’m not supposed to have). My skin’s quite good for my age but, on steroid days, I positively glowed. What I didn’t realise was the cumulative effect of the steroids. My skin has thinned. I have cracked lips for the first time. The other day I gently wiped my face with a flannel and found I’d lifted the top off a small mole I’ve had on my temple forever! But it’s not just my face. My nostrils are constantly sore, my nose constantly leaking. I’ve gone through more boxes of Kleenex this last month than I used all last year! My throat is sore, my voice gets gruff. Then move down. And in. My stomach feels constantly sore. Skin is thinning everywhere. Anything beyond a soft bowel movement leads to hours of rectal discomfort and pain - and it’s inaccessible. My vulva is as sore as my mouth - for the same reasons, thinning skin and destruction of the mucus membrane. So now we add itching and soreness, a pot of Vaseline for one end and a pot for the other. Please don’t mix them up or I’ll get an infection! The only good thing is that the Paclitaxel causes a kind of numbness everywhere and, for much of the time, I can’t feel most of it - SO STOP WHINGEING.

7. Veins. Never take your blood vessels for granted. Some of us are blessed (?) with prominent veins that are easily accessed and (I’ll regret putting this in writing) so far I’ve been fine. But out of sight, under the skin, those poor veins are beginning to protest at all the abuse. Needles, cannulae, toxic substances, none of which they asked for. My right forearm looks fine. It feels like one massive bruise. Thank god I’m not squeamish about needles.

8. Saliva. Nope, not going there. Utter misery, endured as long as the numbness of the mouth doesn’t get worse. If it does... rethink.

And if you got to the end of this, wow, you’re a good friend!

60. Who is this person??

I was a bit optimistic calculating I could drive myself to the clinic today but, in the end, I had no option. Actually I was relaxed and comfortable (and alert!) sitting behind the wheel and I impressed myself by locating a parking space I reversed into perfectly in just one manoeuvre. However, I probably shouldn’t have done it. I’m physically rather weak and felt awful. It was also blowing such a gale that Dennis had to almost push me against the wind to get to the hospital entrance. I was busy trying to keep my double beanie on!!

Clinic was slow, with too much time to observe the other women and feel incredibly sad at how destructive breast cancer seems to be to people’s spirits. A younger woman seated next to me truly looked like she should have been admitted as an in-patient - Dennis said later she had dead eyes. I usually notice stuff like that but I was too busy feeling sad for her and wondering about her prognosis. Yet here I was, probably only half a stone heavier than her, with hardly any energy to get up when called, not giving my own situation a thought. Maybe it’s unsafe territory? Nobody talks to anyone else except their companion(s). What are we afraid of? Intruding? Comparing? I’d love to have asked another woman how she manages with her wig but it felt rude to suggest I could tell she was wearing one. Me? No, still got my defiant fluff, though I have to admit that this morning I noticed a distinct shedding, something that’s not happened for a few weeks.

I would have loved to sit down with my oncologist (one I’d never seen before) and just burst into tears. But she introduced herself and her student and asked how I was getting on with the new chemo after ‘my awful experience’ with EC. I didn’t know what she meant. I just said something like ‘Oh it wasn’t that bad’ and added my usual joke that I can get a side effect just entering a pharmacy. It only registered later that she was referring to the neutrophil count and the neutropoenic sepsis. Ancient history now - why dwell on it? So I thought for a bit, listed the side effects I’m getting (illustrating very clearly the effects on my mouth by lisping - cringe)  and brightly said ‘It’s only 6 more sessions. Let’s just get on with it.’ Who IS this woman? I worried in the car because Den felt a bit queasy from drinking milk that he knew had turned and that was HIM feeling queasy, not me. Yet I take all this cancer stuff in my stride like a different person. It kind of intrigues me - how can I put on such a facade? Actually, I don’t think it is a facade. I had breast cancer. I have to have chemotherapy. I’m confident they are doing their best to mitigate the side effects in the light of my phobias. Yes, let’s just get it finished.

6 more sessions (sadly all at St James’s - the oncologist contacted Wharfedale and they only offer docetaxel treatment, not Paclitaxel), and then my next oncology appointment is in radiology.  I can’t believe it’s less than 2 months away. Having said that, it’s March and I’ve been dealing with this effing disease since September. In fact, it’s exactly 6 months since I spotted the little bumps. It feels like a lifetime. I am so looking forward to getting my body back but there’s a way to go yet. Big sigh.

And still nothing has been said about a prosthesis and basically just preparing for life after cancer. What on earth will I think about when I’ve no side effects to dwell on?

59. Ignorance

You may have noticed I complain about mouth problems a bit. I’m resigned to the fact that I have them for the duration and beyond, since I still don’t know what they mean by ‘these will wear off once treatment is completed.’ Talk about vague. Actually, try not to talk as today is a Someone-Else’s-Tongue day and I have a spectacular lisp! I’m also pulling what Den calls my Alan Partridge Face after the trailer where he’s pleading for some water because his mouth’s gone dry. I call it gurning. 

Anyway, I know I’m not the only one who suffers with mouth problems to some degree or another and I’ve really had to search around for ideas about simple things like flavourfree, paraben-free, low foam and high fluoride toothpaste (not asking much?) and soft toothbrushes without stupid rubber additions to clean your cheeks and tongue (strip them, in my case). They do exist. Oranurse is best but has parabens. Oralieve is second best but has a mild mint flavour that can sting. Baby brushes are best but take ages to clean each tooth and have crazy little handles. Personally, I’m not bothered if I have a pink or green dinosaur. I’d rather just have a nice soft brush that won’t damage my gums.

 

I had my reminder that I’m due for my 6-month dental check up. I rang and explained that I can’t commit to an appointment at the moment and said I’d appreciate the opportunity to talk to my dentist for advice about dental care during chemotherapy. I was told that dentists are not allowed to give advice over the phone. They have to see you as a patient so they know what they are advising on. Hmmm. 

I received a follow-up email from the Patient Liaison Manager saying they had never had such an enquiry before but she’d consulted a nurse who advised continuing with my normal dental care routine. Yes, rip my gums to shreds with an electric brush, burn my tongue with minty toothpaste and aggravate every ulcer and sore spot to the point of tears. Sounds about right. In all fairness, she also included a pamphlet produced by Buckinghamshire Trust on oral care during chemotherapy that is, or would have been, very helpful at the start. 

What concerns me is that, while the oncology team support by providing various mouthwashes, all the information leaflets advise you to speak to your dentist. I would but I can’t get to see him and he ‘can’t’ advise me without looking in my mouth. What about the data from my last examination? What really bothers me is the ignorance. I find it hard to credit that a busy inner-city practice hasn’t had a patient go through chemotherapy before. Do they just give up on their teeth? I’d have expected it to be part of dental training!

Now the big problem. Part of my original chemotherapy plan was zolendrate every 6th week and then every 6 months for 3 years. The intention is to ensure the cancer doesn’t get the chance to return in its most common second option to the breast, the bone marrow. Sounds great. I had one treatment (it wasn’t pleasant but only lasted 15 minutes and the effects disappeared as soon as I was flushed through) but the oncologist stopped it, presumably because of the effects of the EC therapy on my blood counts. The plan is to reintroduce it once chemo is finished. One of the potential side effects is permanent jaw damage. I’ve always had an iffy jaw and was relying on my dentist to advise me on this. It could be a big decision. 

Anyway, I’ve emailed back and asked if they can do some research so that, when I do get to see him face to mask, he’ll at least know what I’m talking about. Funny how I always expect professionals to be expert and well-informed. But honestly, never had an enquiry relating to chemotherapy before? I find that hard to believe, given the sheer number of people I see going through the chemo factory every week! Unless they’re all wearing dentures.... God preserve me.

58. Another decision

I’ve been plagued with a cold since Friday. It doesn’t comply with normal cold rules - I have a stream of watery fluid if I lean forward and have emptied a whole box of Kleenex Balm tissues as I can no longer risk using the same tissue twice. However, I’m also bunged up, having sneezing jags and occasionally coughs. So, it’s just a cold and my new ear thermometer records temperatures between 36.4 and 36.8C. All good.

Not as far as D is concerned. ‘Have you taken your temperature? What if? What if?’ Aargh.
So I rang the hospital this morning to alert them: I have a stinking cold, a normal temperature but I’m worried about spreading germs to the other patients. What’s the procedure please? After the inevitable request for me to take my temperature again, it was agreed I should come in, they would put me in a side room away from others and a doctor would check me out before going ahead with chemo.

I didn’t even take the lorazepam - what was the point if the doctor said no? So Kiera and I sat in a small room where I could blow my nose to my heart’s content, wait for the blood results (80 minutes?), explain to the Child Doctor that I was happy to have the treatment so long as my blood was up to it (it was) and ask him about my increasingly delicate skin, about which he expressed little concern - it’s all dead anyway, so that’s why it seems to shed excessively with such treatments. Actually I’d been referring to a bleeding mole but I can wait till Friday’s review with Dr U.

Decision? It was easy. If I took a week off, I have another 8 weeks to go. If I had the chemo, I am a  THIRD of the way through stage 2 of the chemotherapy. No brainer to me. Now I just need to find a way to rid myself of this bloody cold!

57. Decision time

I can’t decide if I’ve been deliberately perverse/defiant, if I really don’t care or what. Knowing me, deliberately perverse is more likely. The fact is, I have felt completely comfortable with my buzzcut but I can’t deny the fact that it’s getting sparser. I’m completely at ease when I’m out. On hospital days, I’m quite happy to be seen au naturel - though I did notice last week that a few other patients looked at me surreptitiously. Maybe they were speculating on whether it was growing back or on its way out; maybe they were thinking I’d be better off with a wig?

However, it registered with me today that what I catch sight of in the bathroom mirror several times a day is a reminder that I am/have been ill: a pale, wan face with a halo of colourless fluff, thinning eyebrows (thank heavens for the spider legs - they seem indestructible) and depleted eyelashes (sob). I wonder if that’s an image that’s beginning to define me. I certainly don’t want that.

So my decision to NOT allow chemotherapy to determine my self image is beginning perhaps to backfire. I need to decide if I hang on out of sheer cussedness to my original decision or take the pragmatic approach, practise wearing my wig and face the world with no external evidence of illness beyond the pallor.

Flicking back through my phone (I stress I do not take selfies out of vanity but to send to someone else), I have a short history of my hair, from last summer, to diagnosis, surgery and chemo:

   

High maintenance to lower, without the annoying hair around my face

Prepared for practicalities straight after surgery and the inevitable effects of chemotherapy

 

Me on a bad day       Me in my wig

Ignoring the fact that I look like Andy Warhol, I have to admit it’s a much more realistic wig than most I see around the oncology unit and I do look healthier. I suspect that could provide a psychological boost in some ways. I’m disappointed that it’s proving so important. All this angst over a public image!

56. Hi Portugal!

Not a great day. In fact, shit. It’s almost 5pm and I am just beginning to locate some energy. So... no moaning. Instead, I’ve discovered from my stats that my blog has a reader in Portugal. I am bursting with curiosity. How did you find me? Why are you reading this (you are more than welcome but I hope it’s not that you’re going through the same)? Why have you stuck with it? I’m full of questions but fear I’ll get no answers.

The wonders of the worldwide web!

Meantime, I’ve done a bit of creative writing. I’ve only done one piece since September. The words just don’t seem to be there/here (though oddly I manage numbers and avidly do the number puzzles in the i with great persistence). Anyway, every two weeks, a ‘challenge’ is presented on our Facebook Creative Writers page, a title or a prompt for a 300-word piece. The title this time was Finding Something Unexpected. Serendipity? Last night, I let the words tumble out. Here’s what I wrote - autobiography with an attempt to include a bit of creativity.

55. Different every time

I’m beginning to regain my independence, certainly for now. If I can manage to avoid the dreaded numbness, the next two months till the end of chemotherapy look much more manageable. Yesterday I drove up to Refresca with Dennis and ate a bacon wrap (no bagels and I didn’t want to try bread again. I just craved some bacon!). I managed to eat it all though I can’t say what I was tasting - I definitely smelt the bacon. Bliss.

Then I actually cooked a proper meal - enough for four portions of one of my childhood comfort meals. There’s a sense of disbelief among the friends I’ve told - me, cooking?? It’s only like a chicken stew but with quite a lot of rice and everything cooked down to mush but it tastes fine and must have plenty of much-needed calories. Yesterday I could really only taste the broccoli but today I definitely tasted the chicken. Strange when the cold chicken I relied on just tastes of soap. I meant to add kale to it tonight - Maureen brought me some to book group - but I only got as far as washing it. I’ll cook it tomorrow for a bit more nutrition. Still two batches of stew in the fridge.

Book group was interesting. People are right - I do feel better when I’ve got people around me and a focus - but it’s still exhausting and by the time I got home, I was ready to flop! I wore Georgia’s pink wig as a dare (probably the first dare I’ve ever taken up - so you’re never too old). It was easily disguised by my grey beanie to avoid the public gaze - I’m not that daft - and it didn’t last long as it’s a bit itchy but it provided some entertainment. I also managed to drive myself, which I hadn’t expected to do so I was quite chuffed.

To top it all, the gift of fresh home-grown kale (which I’ve never tried but know is nutritious) and a tub of snowdrops from Joyce, ready for next spring - and this morning, the arrival of two pairs of cashmere bed socks from my dearest friend Trina to replace my miniature ones! How thoughtful is that!

Almost too beautifully packaged to open, let alone wear!

I also bought a new digital thermometer on the way home so I can send the faulty one back to Lloyds. I hope it’s a one-off fault rather than a faulty batch - the thought of other people, particularly children, at risk of an ‘ignored’ fever is quite alarming. But that’s for Lloyds to sort out now. I think I’ve enough on my plate for the time being. Just one problem - the faulty one is giving higher readings now, like it knows it’s got competition!

54. Round 2 Paclitaxel

Maureen (my mentor Maureen not Maureen my former colleague with her defiant high heels) sacrificed a whole afternoon for what was basically a 90 minute treatment for me. It’s very reassuring to have her around - she has a lot of insight.  Over 5 hours is beyond the call of friendship!

It’s too soon to find out how it affects me. Last week wasn’t great but it didn’t debilitate me to the point of not functioning. I just need to make sure I don’t succumb to the dreaded numb limbs and nerve damage (which, btw, can be permanent - they just sneak that little bit in where it’s barely noticeable). Soon as I got home, having remembered my homoeopathic remedies at the right stages, I went into eating mode and haven’t stopped in 2 hours. Of course not all of it is healthy (face it, most is distinctly not, like the Cadbury’s) but I’m just grateful to find things that taste.

At Nurse T’s suggestion, I took my electronic thermometer and compared results with the hospital’s ear thermometer. TWO degrees difference in the same body at the same time. This is mine, theirs said 36.8!

Obviously it has to go back and I’ll invest in the ear thermometer (it just seemed a bit excessive at the time for someone who hadn’t used a thermometer for decades). But it takes me back to that night when, had I not rung the emergency number to appease anxious Dennis, had I stuck with the temperature readings I was getting, I would have been increasing my chances of a fatal infection by the hour. 37.3, which I thought too low to worry about, must have been close to 39. It’s quite a scary thought. So I don’t think I’ll buy Lloyds again, just request a refund and an explanation (if they have one).

Meantime, there are reports in the press about the low uptake of breast screening and letters saying how essential it is as it saves lives...Hmmm, don’t put all your faith in it. It’s not infallible. Maybe we need a campaign for teenagers to get friendly with their boobs, know every nook and cranny, every bump, lump and rib while they know they are healthy. Self-examination with the right knowledge seems way more important than screening which isn’t available till you’re ‘old anyway.’ Get young women to know their boobs and feel confident. But I still want to research the data about breast cancer screenings missing the signs...One day.

Next I’m going to have a go at some creative writing, which has been on hold too long. The perfect 300 word challenge has cropped up: Finding Something Unexpected. Think I have a bit of atobiographical cathartic writing I can have a go at. Might be fun.

53. Oh dear

You may be aware of my weakness for cashmere. I live in cashmere joggers, have countless cashmere jumpers (which I can’t wear again till I get my noob sorted out - a lop-sided chest rather spoils the lines of Jigsaw’s best), scarves, beanies - and bed socks. I bought three pairs in White Company’s sale on Christmas Day, warding off my ‘first chemo’ fears. No, I don’t need an excuse. I bought three pairs because the ones I had had gigantic holes from where I foolishly tried wearing them as day socks. I bought three pairs full stop. Cream, dark grey and cream cabled. I can’t begin to describe how wonderful they feel.

Right now, I’m not really up to a gentle hand wash. My veins are getting tender, my grip is a bit feeble. When I was in hospital, I took the third (unworn) pair, the cream cabled, and they were much admired. Meantime, my well-meaning husband scooped up the laundry and bunged it in the machine. He’s well-trained regarding what can and can’t be tumble dried (following a very expensive loss of clothes when he stopped work and took on all the household chores and made rather a large number of mistakes - what does he understand about fabric??) but I’ve never educated him on cashmere - that’s my job. So... I now have two pairs of cashmere socks that might just about fit a child. I daren’t say anything - that would be so ungrateful. And I still have the one pair.... I shall wait for the next sale as the price is ridiculous.

And I’m thinking, if this is the kind of stuff bugging me, things must be going ok!! Still a fair bit of stomach discomfort from the Paclitaxel and the mouth/saliva problem, but today I went for a short drive and managed fine and I’ve eaten 3/4 of a pizza (close to miraculous). I’m halfway through an Oykos yoghurt, another new addition to my healthier diet I hope. SO It looks like I’ll be able to rearrange my Monday chemos so I can drive to Wharfedale, get my bloods done and then go to St James’s on Tuesdays for chemo, thus not having to waste so much of my friends’ precious time hanging around for results, dose calibrations etc. I know people don’t mind but I do. I’m so grateful for their generosity and want to keep demands to a minimum.