34. Celebrations

Monday is chemo 3 of 3 and I feel like it’s way too soon. I’m still knocked out by chemo 2. However, little things I can celebrate :

1. I just detected the faintest taste of chocolate when eating a chocolate covered mini-roll I pinched from Dennis’ supply. It was sufficient to compensate for the crumpet that was just tastesless slime and enough to encourage me to add a bag of Cadbury’s mini-Twirls to the box of snacks I keep to hand.

Could I risk the disappointment though? I think just the comfort of the bag in sight is enough for now.

2. A bowel movement. Sorry, there’s no room for delicacy in this treatment regime. A bowel movement, even with regular senna at night, is no mean achievement and something to be shouted from the rooftops as it means a couple of days’ respite from discomfort. The fact that I could hardly sleep last night for the rectal pain it left is irrelevant. I guess EC strips the layers away everywhere.

3. A day off from the oncology clinic. I had a phone consultation with nurse T today instead and I have to nip to Wharfedale Hospital for my blood tests tomorrow. Of course it’s market day, sigh. If only I knew my way round the side roads but a lot of it’s one-way so I’ll end up squeezing my way very slowly down the Main Street, lined by market stalls, trying not to hit pedestrians and cursing the lights which allow maybe three cars through at a time!

4. Stuart the plumber coming round straight away, locating a corroded pipe instantly and repairing it - Never mind that the kitchen ceiling is a blistered and water-stained disaster area. AND I have more hair than he does (I’m guessing he opts for a No 1) and his dad’s got his 5-year clearance from cancer coming up soon.

Four little celebrations may look a bit pathetic but they’re landmarks for me :)

33. Crowning glory?

Winter is probably the best time for going bald. No one gives you a second glance when you’re sporting a beanie or a woolly hat. Today I ventured out in my lovely grey cashmere beanie, leaving the wig behind.

There’s not much hair left but enough for now:

Once I got to the gym (restaurant only of course), I didn’t hesitate to take off my hat and I don’t think anyone was traumatised! I certainly didn’t give it a second thought but will I feel the same in a couple of weeks when there’s not even a stubble left?

Maybe I need to practise wearing the wig so I don’t feel so uncomfortable. I can’t imagine wearing it through two hours of chemotherapy, especially a zolendrate day, but if you can’t go au naturel in the oncology suite, where can you? Oddly, I haven’t seen a single bald person in Onclogy yet. Very few seem to be bothering with the cold cap so either I’m very unobservant (definitely, I’m Lorazepamed) or the wigs are very convincing.

This feels very stilted and uninteresting. I suspect it’s because I want to have a good old moan about my mouth, stripped bare of all its protective layers, which is driving me mad.

32. I want my body back

Over the last few days, I’ve been pondering. Not much else to do when I have the concentration span of a gnat. Be ready for a bit of a whinge. I can’t recall ever having been ill except related to mental health, when I’ve had a couple of bad times. But actually ill? Chronic tonsillitis isn’t ill. Mild flu isn’t ill. But cancer is ill.

Breast cancer itself hasn’t made me feel ill. I felt perfectly healthy even after the diagnosis - not happy, but physically healthy. Even traipsing round with a gungy drain dangling by my side, I never thought I was ill. I wasn’t happy about it and I felt drained (sorry, can’t think of an alternative) and movement and exercises were painful - but that’s not ill.

Now I know I’m ill. It’s not the cancer but the treatments. I’ve handed my body over to the experts - what choice had I? - and I’m suffering the consequences. Chemotherapy, let’s face it, is total shit. Your body is pumped with poisons doing god alone knows what damage to what was a perfectly healthy system in the hope/knowledge that, by destroying virtually anything in their path, they’ll destroy any rogue cancer cells.

I say that with certainty. If I didn’t have that certainty, I don’t think I could cope. Chemotherapy will work.

But I’m becoming increasingly aware that the treatment is stealing my body from me, making it do things I don’t want or like but can’t prevent. I think it’s all the harder because of my MH problems which mean I simply don’t trust my body, particularly in terms of nausea. But come on, I’ve not been sick, I’ve not felt sick, I’ve probably experienced less nausea than I did before. But lurking in my mind is the knowledge that chemotherapy can make you sick. That’s enough to fuel my irrational phobia. (Good example of tautology there!)

So I watch myself getting thinner by the day. Much of my day is spent trying to get in the calories and down enough fluids to keep hydrated without exacerbating the constipation and abdominal cramps. The loss of pubic hair makes me feel infantilised. You’d think the loss of a breast would be worse but I reconciled myself to that very quickly and it doesn’t bother me. In fact, when I look down, all I see is a healing scar, not a missing boob, and I’m actually rather proud - I got through it! The disappearance of nasal hair makes me feel like a kid, the poor little mite with the constant drip. I feel very tender bruises that aren’t visible. I have the beginnings of an open sore on the bridge of my nose where my glasses rub, despite having soft gel grips.

Right now, my biggest problem is my mouth. It’s simply not mine. It doesn’t feel like it fits. My teeth ache so maybe I’m grinding my jaws again, a habit broken long ago. I worked out last night that the excessive salivating and the foamy saliva is caused by the mouthwash the hospital gave me. Rock and a hard place! My tongue is ulcerated, red raw in patches, stripped of protective layers, and the mouthwash can help. But, as with all the other stuff, do the benefits outweigh the misery?? I went to sleep about 5 this morning - excessive saliva and a slightly numbed throat made sure I was too fearful to sleep. I slur my words and lisp because my tongue isn’t mine - not conducive to prolonged conversation when combined with chemo-brain.

My physical strength is minimal. We went out for a coffee yesterday (Happy Birthday Dennis) and I just felt so bloody tired, I thought I might faint. Not a fearful or anxious thought, just a recognition of how my body was feeling. I know I’m at the point in the chemo cycle where my blood count is likely to be lowest so I’m assuming it’s that. I decided that, rather than wear my buzzcut with pride, I’d wear my wig. The tightness is almost claustrophobic. I was tempted to whip it off and let people stare or speculate. I actually don’t care what other people think but, on the other hand, I don’t want to be publicising the fact that I’m undergoing chemotherapy.

Still, it’s all infinitely better than the chemo trough so maybe I should just be grateful that’s over for now? Only one more EC cycle to go before the next challenge, Paclitaxel.

I just wish I could be me again.

31. Kindness

Today I received a brief email enquiring after my health and progress and wishing me a speedy recovery. It was from someone who, to all intents and purposes, is a complete stranger - Phil runs a writing competition on Retreat West’s website and I’ve won a few times, by public vote. I’d won the last competition and had to explain that I wouldn’t be able to take up the prize for several months. In fact, I haven’t used the previous prize either - it coincided with my diagnosis. I haven’t been able to keep up with my flash fiction writing, love it though I do.

https://www.retreatwest.co.uk/photo-flash-challenge-4-finalists-announced/

I am so touched that he and his colleague remembered, let alone cared enough to follow up a month later. The kindness of strangers!

My cousin Tracy, whom I haven’t seen for many, many years, frequently sends me a card or a postcard out of the blue or a private message on Facebook, just checking in, making sure I know I’m not forgotten. I remember Mum saying she regularly got cards from Tracy which always cheered her up. My neighbour Lisa, despite dealing with a recent bereavement and fighting all sorts of battles herself, just checks in to see if we need anything doing. I was moaning about some of the horrid side effects of chemotherapy and Trina, bless her, arranged for next-day delivery of things she’d researched like flavour-free toothpaste (wonderful), mouth spray and pure virgin coconut oil. There are such lovely, kind people out there.

Den goes up to the newsagent’s early every morning. It started as a ploy on my part to get him out of the house and into the fresh air - and I do like my daily i. He exchanged good mornings with a woman with the same routine and they’d occasionally chat about the proposed development of the village and its impact on us (not good). One day she asked if we were making any progress finding a new house and he found himself telling her it was on hold because of my ‘illness.’ Now he must have been pretty desperate to confide in anyone, let alone a stranger. Since then, he gets regular enquiries from her and the newsagent staff about me and my progress - yet they wouldn’t know me from Adam (though I suspect right now they might recognise me by the hair, or lack thereof).

I was told by my art teacher, Miss Martin, when I was 11 that I was cynical. I didn’t know what it meant but I knew it wasn’t a compliment. She was right. But I’m healthily cynical and I see nothing wrong with that as, over the years, it’s become balanced by an open mind, the wish to see all sides of the picture (blame History for that) and, above all, the empathy I developed as a teacher. But I don’t expect to see the best in people and am taken aback when it comes my way.

So...a big thank you to all those friends, neighbours, acquaintances and strangers for caring. I’m touched.

30. Emerging again

Quick update: The chemo trough was worse but shorter. A couple of days ago, I wallowed in absolute and abject misery. Wallow perhaps is the wrong word as it implies a degree of choice and far too much effort. Let’s just say I lay in a stupor. First round of chemo, the emergence occurred around Day 12. This is Day 9. No comment - I don’t want to tempt providence.

Today I want to do something. I’ve no idea what but something that removes me from my pit, energises me a bit and makes me think I can carry on through the next challenges. I don’t yet have the physical strength for a walk - I’d go dizzy by the time I got to the end of the drive - and I’m not fit to drive (yes Philip, some of us recognise our limitations have implications for others!). Maybe I’ll ring round and see if anyone can spare an hour to take me for a drive, even if I just sit in a car park!!

Progress report: buzzcut looking sadder by the day as I lose those tiny little hairs steadily and my steroid glow has gone. Pubes vanishing mysteriously. Where do they go? I imagine leaving a trail of discarded hair but I’ve seen nothing. Considering I used to teach sex education, you’d think I knew all I needed to know but it never occurred to me there is a difference between hair on the pudenda and hair at the top of the legs, the stuff you hate and want rid of. Nah, I reckon that will resist the most toxic infusions, survive like the cockroaches! Nasal hair is disappearing- not something I thought about much till now, faced with a constant drip!

Taste: still salt, with a little sweetness detectable in the unhealthiest of foods, like the Starbursts. Yes, I’m embarrassed to admit that a sweet now qualifies as a food for me.
Appetite: trying the 2-hour rule for now as I have neglected food for fear of being sick. Started with toast and jam at 9am. Now moving onto porridge and blueberries (ah, that burst of salt when I bite into a ripe juicy berry).
Fluids - still struggling to maintain my minimum quota and only too conscious of the dire consequences of neglecting this. Internal stagnation is not a happy state to live with. I’ve realised that my staple decaf tea affects my mouth and taste so I need to focus more on water. Fruit teas are just coloured water at the moment. Sports drinks are an alternative but drinking them through a straw makes me fear for the health of my front lower teeth.

Things bugging me: my lovely psychiatrist telling me for the nth time that she’s seen her mother-in-law go through this three times. I know it’s meant to reassure but THREE?? Isn’t once enough? I have no intention of going through this twice, let alone three times. This leads to the nagging thought: is one ever completely free of the fear of a recurrence? How will I ever trust a mammogram again? Those thoughts for now go back into their compartment - ah, the reassurance of Land of Denial.

Speaking of psychiatrists, when I first met her (pre-diagnosis), a major concern was the onset of winter depression which has laid me low the last three years. I have found a solution: breast cancer and chemotherapy leave no room for depression. I still experience anxiety but I can honestly say no depression this time. Of course once has to weigh up the pros and cons - mental wellbeing or physical survival. Something to ruminate on another day.

Btw, if you’re wondering where entry 29 is, it’s not published. Written at my nadir a couple of days ago, it contradicts everything I’ve been saying and thinking and is best left private. It’s a miracle I was able to string words together, let alone thoughts, but it was therapeutic for me.

28. The taste of...

I read some advice in the Breast Cancer Care discussion forum about eating ice lollies during chemotherapy to reduce or prevent loss of taste. Checked it out with nurse T who explained that they used to provide lollies once but the evidence was that it didn’t work unless (like with the cold cap) your mouth was numb with cold throughout. I’m not the best candidate for numb! So I left my lollies at home.

Next time, I’m trying lollies regardless:
Apple juice - tastes like salt water
Sweet golden raisins - taste like salt
Lucozade Sport (lime and lemon) - taste like apple juice ie. salt water
Delicious blueberries - a salt burst on every bite
Chocolate - tasteless
Tea - pretty tasteless (unless 2 sweeteners, then yuk)
Banana - back to tasteless slime but necessary for bigger or dry medication.

Butter is proving ok. I add it to tasteless mashed potato, green veg. Of course it tastes of salt but at least it’s real, not imaginary.
Gravy is good - proper salty.
My flavour-free toothpaste - tastes of salt!

My current salvation is accidental - thanks to Anne offering me one in the car coming back from chemo. Starbursts. Ok, they taste increasingly salty but there’s a hint of flavour and sweetness and they’re juicy. I’m still working out the best way to unwrap them in under 60 seconds - it’s like Mars know they’re bad for your teeth and add a deterrent!

Then I need mouthwash (chemical and salt) or water (strangely saltfree but doesn’t taste like water should). Must look after my dental hygiene as I don’t fancy treatment right now.

No wonder my appetite is struggling. Oh, it’s always a struggle given my phobia but chemotherapy isn’t helping. I’m one of the unfortunates who can’t resort to highly spiced foods, which seems to be the preferred option on the forum.

Pineapple’s optimistically back on the shopping order (melon was a flop), along with cooking apples, lemon and eating apples. All recommended. Will they taste of...salt? I’m staying optimistic for now.

I’m beginning to turn into a bit of a moaner. Stop it Jan!

27. Coming or going?

I’ve arrived at the conclusion that I’ve grown out of multitasking. I know it’s not the great talent I thought it was - nothing gets 100% attention - but it’s how I always worked and I juggled those tasks well enough.

Now I’ve lost the knack. I can barely hold one thought in my head. While I’ve focused on the chemotherapy, I’ve neglected my noob. My muscles have tightened and I’ve lost my flexibility. My scar and surrounding muscle have tightened up again and I’m sore, if not in pain. I need to return to the exercise and massage regime, instead of the cursory rub up the arm when I feel a bit of discomfort. But that takes effort and I’m so tired...

Then I’ve got more medication than I’ve ever had in my life. How do I organise that? I have a checklist, I move them strategically so they should be at the right place for the right time - but some are 4 times a day, some two twice a day, some once, some as required...and if they’re in the bathroom, like the essential mouthwash, they get forgotten.

Oh, and I have to fit in regular fluid intake and regular eating. Some tablets need food, some need fluid, either cold water or a warm drink. How am I meant to remember all this!!

Then I’ve got the ‘schedule’ of chemotherapy side effects. Yesterday the steroid high, today (still on steroids) laid low - till I remembered that a possible side effect of the newly-added zolendronate is flu-like symptoms and I understand why I feel totally shattered.

Add more letters with more appointments (another two on the same day, four hours apart - so helpful) and my mind is totally boggling! Thank god for yesterday. May tomorrow (well, it’s today now - steroids don’t help with sleep) be another yesterday rather than a repeat of today. I still love my new hair!

I have to take my beanie off to all those women who manage to organise their families, carry on working and generally get on with life because they have to. I’m so lucky I’m free to go where the mood takes me. Not so sure how lucky poor Den is though!

26. It had to go...

Today has been a surprise. First, I felt fine (thank you steroids), which shows the power of negative anticipation on me! Then my heart sank. Wouldn’t yours?

So I rang the hairdresser and she came round to do the deed. I’ve known her for decades. What I never considered was that it might be a moving experience for her too. So here’s how it went:

                
                                                           I LOVE IT!

I’m pretty sure I’ll happily go out like that, tho I’ll need a hat for warmth outdoors - this is Yorkshire in January after all! What’s sad is that it won’t last long. Once the pink shiny patches come, I’ll move onto my wig for when I go out and my beanies if it’s cold indoors. I can’t tell it’s a wig to be honest but I’m such a delicate lil flower, doubtless I’ll get itchy rashes.

So, no trauma, a lot of laughs and I’m happy - for now.!

25. Have I made any progress?

Oh I swing from one view to another in the blink of an eye. I’d be great on Question Time - see the positive in everything I frankly am past caring about!

Yesterday I spoke in such positive terms about the cancer experience that I even surprised myself. But come on: if the mammogram isn’t 100% reliable, then the fact that my cancer broke out in my skin (ie. areola) was sheer good luck. I’d be happily living out my days till my next mammogram which would reveal stage 4 cancer, probably affecting multiple parts of the body, judging from the disapproving comments the consultants have made about it. One day I must ask just what was so bad about that third lump that it led to all those tests and this treatment.

Anyway, suffice to say I considered myself lucky. I still do. In 5 days time, it’s a safe bet I’ll have changed that mindset.

Today I had chemo #2. We were ONE MINUTE LATE (I went to the wrong clinic reception) and had to wait almost an hour and a half before being seen, by which time someone else had baggsed the Overflow Room. I kept wondering, what if the effects of the Lorazepam run out?? However, even though I had an additional treatment, it was a lot faster than last time.

Things to note:
1. Don’t bother taking puzzles. You’re right-handed, Jan, and they have that right hand becanula’d and wrapped in a dinky little electric blanket. Basically, talk, sleep, eavesdrop, maybe the kindle.
2. The steroid effect varies. Today it was a sudden prickling in my buttocks, genitals and bladder that lasted about 10 minutes. Disconcerting, especially as the first thought is I must pee...
3. Epirubicin, which I seem to get in vast quantities, turns your pee scarlet. It’s essential to remember this to avoid freaking out when you do eventually get to the loo. It changes to a pathetic pink as time (and urine) passes.
4. I am in awe of the nurses who have strict protocols to follow which seem so time-wasting but are essential. They move from patient to patient, injecting those nasty poisons and distracting us with not inane chatter. Today was the origin of names - we had an Ibbetson and a Hellicar. Hmm, I notice Anne didn’t contribute her surname. Now I wonder why ;)
5. Hospital tea is undrinkable. Maybe someone could do research and see if it might be added to the intravenous drugs, the only way they’ll get it in me. It has to have some purpose and probably could kill off a few recalcitrant cells.
6. Leeds workers must be idle sods (I’m safely retired). The rush hour is well-established by 4.30!! Who’s manning the phones, attending trade union meetings?? Nope, all heading home for Pointless.

I have a mini-pharmacy in a plastic bag.

I need to have a serious look at it but it looks challenging. Hopefully if I get it right, it may obviate some of last time’s ugh-time.

What I must try not to do is anticipate what won’t happen. It didn’t last time. Why would it this time?  Take each day as it comes, not expect good, bad or indifferent.

Maybe I’ll be trying so hard not to focus on the vast quantities of hair coming away at the slightest touch (and sometimes no touch at all). Poor lost little mites. Poor me.

24. What’s happening to me??

I just spent a whole hour browsing through headwear for baldies. Please, anyone who notices, STOP ME from turning into a chemo fashion plate!!!

It seems I am expected to want to wear turbans; things with rosettes attached (they don’t say if you came first or if it’s just for taking part - probably wise); dangly drapy things that look elegant on swan-necked dummies - and bobble hats. Everything accompanied by huge dangly earrings. I like studs. Dangly earrings I want to rip off.

                  

                 

What I have :
Good: a swan neck, oval face
Less good: ageing skin, gravity, bags under my eyes, that bloody spot on my jaw, pale as a bowl of porridge

What I don’t have:
Doe eyes, perfect skin, a permanent smile with glorious teeth to flash
The desire to shout LOOK AT ME.

I am 67 and I have breast cancer. I am undergoing chemotherapy and catching my hair as it slides out by the handful. I am not going to feel any more positive or glamorous by being presented with models glowing with youthful energy, heavy makeup and, beneath that headwear, a full glorious head of hair.

I have to confess I stood in Boots on Thursday next to a woman who looked absolutely stunning: tall, long neck, black scrunched-up headwear and matching black scarf over what was obviously a very very expensive drapy sweater. It’s not a look I could carry off but I take my hat off to her for style! Well, make that ‘my beanie.’

I shall wait till I see something I like and stick with my cashmere beanies for now!

23. Smile for the camera...

Yesterday wasn’t a day too soon. Today my hair is slipping out in strands. There’s hair everywhere. Fortunately, my lashes and brows are safe for now.

So here goes. T, the Macmillan hair loss specialist, had a wide range of wigs and a lot of expertise - but stocks were low. Emma sat and took notes while T and I pulled on the wigs and considered the style, regardless of colour - not an easy task. Hairdressers’ mirrors are never flattering. This one excelled in that department!

1. The Dennis The Menace look (meant to look fluffy like my current style but synthetic hair doesn’t fluff well)

No thank you. Not even in white.

2. Sorely tempted. I did like the high and lowlights, even the asymmetric cut was fine. The downside was it would scream WIG to anyone who knows me (so what?), the bigger downside is that I might like it too much and end up back in my old ways of spending time and money on hair upkeep. Nah. I prefer my simple approach now.

3. Final choice. Perfect colour. Style fine, maybe a bit short over the ears but I can brush it forward over my face, which is how I like it. Most people won’t even notice I’ve moved over to a wig. The big question is will I get used to wearing it or will it be easier just to wear my beanies?

22. A change in direction?

The tide may be changing. Four appointments at St James’s in two days and I came away short on blood but smiling. Good news at last. It makes such a difference.

1. My bone scan results were completely clear. I’d been kidding myself it was to establish a baseline for the new, additional treatment which I have to start Monday. Turned out it was to check no cancer had spread to the bones (apparently a popular destination for rogue breast cancer cells). So I fooled myself but didn’t fool my husband. I still think Denial is better for me though.

2. The concern over the enlarged lymph nodes in my remaining breast muscle was ultra-caution and I have been told I am officially cancer-free. Can’t improve on that. Unfortunately, to ensure I stay that way, I still have to have all the treatments.

3. A comprehensive let’s-prevent-constipation treatment has been added - apparently the culprit is the initial anti-nausea tablet given at the start of each chemotherapy session (and I’m not giving that up!!).

4. Wig shopping is hilarious and appalling at the same time. I looked completely haggard and every bit of 67, whereas till recently I looked younger than my biological age. I’m seriously thin and drawn and actually look like I’m ill, even though right now I don’t feel it.

There wasn’t a great range to choose from and I had to try styles regardless of colour. Fortunately, the second one I tried was ideal though I was sorely tempted by one with highlights and lowlights. What deterred me was the fact that eventually I’d have to go back to white or return to spending a fortune at the hairdresser’s. Emma, my goddaughter, independently chose the same wig so I reckon I chose well. I certainly needed to get the wig today rather than order something as I’m shedding hair like Bonnie, our long-haired white cat (now gone) who would leave a trail wherever she went. Time to change to pale sweaters for a few days!

I’ll work out how to add the photos another day. They are seriously unflattering so I’m in no rush.

21. Little niggles

You may have got the impression that I am prone to thinking the worst, ruminating on the worst possibilities and restricting my life to avoid these where possible. Mainly correct - if it’s associated with any part of my body linked to my digestive system, that’s my life. But it doesn’t seem to work that way at the moment.

I’ve found it odd how successfully I’ve managed to exist in the Land of Denial. After all, there are little (?) things that niggle at the back of my mind. I push them away to be dealt with another time. This is how I am progressing through treatment.

Today, I had two trips to St James’s, with two new routes. Pauline took me at lunchtime to Nuclear Medicine to have my radioactive tracer injected. I was uncharacteristically calm. I could have managed on my own but there was always the possibility I might just panic and need to take a diazepam so I opted to ask someone to take me. Again, I was surprised at how adaptable the staff were. The radiographer T was very reassuring and, when I mentioned I could be claustrophobic, took me to see the equipment and talked me through the process. As he said, there was no point in giving me the injection if I couldn’t face the treatment and he’d discovered for himself only recently what claustrophobia was like.

It’s a strange feeling, knowing you’re toxic for 24 hours!

Marilyn and Clive took me for the scan. It was absolutely fine because T had explained it all to me. He did nothing to exacerbate any anxiety like strapping my arms down (one advantage of being skinny is that I actually fitted the ‘bed’ easily) and even stayed with me when my head was being scanned in case I got anxious. How kind is that! Actually it was a bit frustrating because I was trying to meditate and he kept interrupting. The scan took exactly 18 minutes and I get the results in a week. Once we got home, a lovely period of complete normality with not a single mention of cancer and only the slightest reference to it by accident. Tea and crumpets and a chat :)

Niggle: I have explained the need for a bone scan as providing a baseline to determine what dosage of zolendronate I shall need. But that’s my assumption. What if the bone scan picks up some cancer cells in my bones already? See? The seeds of a huge source of anxiety and worry are there. I’m just not giving them what they need to grow. So do I want the results? Do I ask for them or wait for them to mention them at the next clinic 3 weeks away?

Niggle: I can’t think of much that could make compelling reading about constipation. Suffice to say, the problem resolved itself painfully and now I have the reverse problem. The problem for me is whether I should use my usual IBS medications. Which is better for my body: no movement or too much? Normal people would just get on with a healthy diet, high in fibre. Me, I’m struggling to get the calories on pap, which is about all I can tolerate at the moment.

Niggle: the booklets say mouth soreness will improve when treatment stops. I know EC interferes with the immune system and healing is slower. Am I condemned to months of ulcers, sore palate, raw gums (I bought the dinkiest baby’s toothbrush today) and so much pain I can only comfortably eat stuff like porridge, chicken soup, dunked Rich Tea biscuits and tasteless banana? AND my miracle toothpaste contains methylparabens. I know parabens are banished as they replicate oestrogen or something like that. Dammit!!!

Niggle: I forgot the advice to buy a hair net. I’m shedding white hair everywhere now. BC baldness approaches...fast.

20, Euphemisms

I’ve never been a great fan of euphemisms. I hate it when women refer to their genitals as their ‘vagina’ (no, that’s the bit inside) and I’ve never understood why people avoid using words like death, dying... ‘passed’ makes me flinch, reminds me of Victorian spiritualism, and I can’t think how it could soften the blow of someone’s death.

I’m beginning to notice euphemisms associated with chemotherapy. I can understand it (no one wants to be scared witless at the prospect of side effects and there are some people who are prone to anticipate the very worst. I may be top of the list here!).

‘You may feel tired and lethargic...’ What they really mean is there’s a strong possibility you will feel either you’ve been knocked over by a lorry and left lying as roadkill, flattened by a steamroller or had your drinks spiked over a period of several days. Nothing prepared me, not even my wildest thinking, for that feeling that your body is not your body. Limbs don’t do as you will them to do, basically because they aren’t your limbs - surely they’ve been replaced by someone else’s? They feel numb, they tingle like a local anaesthetic on a grand scale and the only escape I found was meditation. When you’re in a trance-state, you don’t notice the heavy lightness of your limbs. That is good!

‘You may find your mouth becomes sore...’ Yes, I have. ‘Sore’ doesn’t cover it. I could literally feel and see the lining of my mouth peeling away in strings of slime (a bit like when I use Oral B toothpaste, only the lining isn’t replaced). I have chapped lips for perhaps the first time in my life, again the consequence of a whole layer of skin peeling away, so I’m constantly applying Vaseline (aloe vera of course). My gums feel like they have shrunk and my teeth itch like when I have the worst kind of cold. Chewing can be very painful. Add ulcers around my tongue (which I haven’t experienced for perhaps 30 years) and my mouth right now is in a sorry state. I shall take some ice lollies to the next session of chemotherapy and see if that helps. Meantime, Trina has sent me two tubes of flavour-free fluoride toothpaste. I expect it will be vile but it won’t sting! I got an ultra soft toothbrush especially but I might have to change it for a baby’s brush as my gums are so sore.

‘This treatment can make some foods taste different.’ Try, this treatment destroys your sense of taste and texture so basic foods make you feel totally nauseous. As soon as I find something palatable, like fresh pineapple and lemon/lime drinks, I meet a downside, currently ulcers. Try enjoying that burst of tangy pineapple when your whole mouth feels it’s on fire. Maureen found she favoured spicy foods. My delicate little tummy can’t handle garlic, let alone spices, so the blander the better for me. And the way my stomach has been feeling, despite Lansoprazole, I wouldn’t be at all surprised to find layers inside me, like my stomach lining, being affected in the same way.

Hair loss is inevitable. I’m ok with that (I think). What I wasn’t prepared for was the pain of the process. As a kid, my mother used to tie my hair in rags so I had dinky little ringlets. It was agony by morning. That’s how my scalp feels right now, like I’ve been sleeping with my hair in the wrong direction. Ouch.

The best (?) is the comment that most of these do improve once treatment is stopped. Wtf does that mean?? Have I got another 5 months of this physical misery? What does ‘most’ mean?’ Which ones am I stuck with for life??

On the bright side, I’m getting cured aren’t I, so why am I whingeing!

19. The Land of Denial

I know ‘denial’ in oneself and in others can be very irritating, isn’t constructive and supposedly holds one back, Well, I got out of my meltdowns and have got through the past few months by frequent recourse to what I nicknamed Land of Denial.

Frequently, I was advised to ‘take it one day at a time.’ Sometimes it was one hour at a time! Surely that’s denial?

I accepted I had breast cancer. I accepted I had to have a radical mastectomy. I accepted I couldn’t avoid chemotherapy. But there’s only so much a mind can deal with, particularly one prone to obsessing about what ifs. So Land of Denial was/is a useful tool in my armoury and a way of controlling my phobic reactions. If it’s psychologically unhealthy, tough. I think I’ve lived enough years to understand what is destructive to my mental wellbeing and what isn’t. When friends asked how I was, I’d blithely reply ‘I’m happy in Denial Land.’

First, I decided I would keep my questions to the minimum and trust the experts. I still don’t know what was meant by “it even came out in your skin.” When I’m better, I’ll ask. It sounds scary and I have enough to scare me already. Though, thinking abut it, if it hadn’t come out in my skin, I’d not be writing this blog; I’d be happily living my life, oblivious to the cancer spreading its way determinedly into my lymphatic system and embedding itself in less reachable places in my body. By the time I found out - maybe two years time when I faced the next mammogram - it would be a terminal case.

Second, I refused to look up anything on the internet. My Google history is untainted by desperate searches for information and what x,y or z mean, let alone prognoses and statistical predictions for a ‘cure.’ The language is alarming enough: aggressive, invasive... If my consultant talks about seeing me in a year’s time for a checkup and my oncologist talks about 10 years on whatever nasty drug it will be, I can happily infer they expect a good outcome. That’s enough for me.

I limit my searches to practicalities - how to deal with cording, what to take to a chemotherapy session, how to prepare psychologically for going bald, what to eat when nothing tastes and, right now, how to deal with a sore mouth and incipient ulcers. After all, there are millions of women out there, and a few men too, who have those answers and are only too happy to help a fellow sufferer along.

Third, I’ve only skim-read Mr B’s letters to my GP. I had (have? I haven’t asked) grade 2 invasive lobular cancers but all margins were good except the axillary cancer... I stopped reading there. With my propensity to catastrophise, a little knowledge is dangerous. I’m leaving it to the experts.

I don’t want to know any more than I know already. Land of Denial enables me to achieve a level of peace of mind that helps me through to each new stage. Right now, I’m not thinking about the next session of chemotherapy. I’m just dealing with what the first session has done to me.

18. Petty little things mean a lot

Completely at random:
Meds
1. Putting a tablet in my mouth with food and forgetting to swallow it. Ugh. Now I know why they are coated.
2. It’s surprising how I can hold a tablet in my hand and, 5 minutes later, it’s not there. Did I take it? Is it hiding in the carpet or the duvet? I have no idea.
3. The obvious solution is infantilising and I refuse to be ‘supervised!’
Food
1. Losing my sense of taste and texture (hopefully temporarily) so I can’t even swallow my staple banana is disgusting.
2. Fresh pineapple is GOOD. Juicy, flavoursome and nutritious. Preparing fresh pineapple when you’re too weak to wield a knife is impossible. Ready packs for now.
3. High-calorie foods and nutritional supplements cause indigestion. The high-calorie ‘shots’ are undrinkable! The dessert pots are ok, preferably chocolate.
4. There is no comforting a Cadbury’s addict who’s lost her taste for chocolate.
Fluids
1. It’s bloody hard sourcing thin drinking straws now we’re more eco-aware. A straw is not simply a straw, it’s also a vast air-vent to someone with problems swallowing. The narrower the better right now.
2. Fruit jellies are a way of getting extra ‘fluid’ but short on calories. Calorie-deficient food to me is a waste of time and effort. Give me CALORIES.

3. Even water can taste foul. But then, so can tea, milk, anything really.
4. It’s surprisingly hard to increase your fluid intake while you have to drink through a straw.

Body

1. Scars tighten up if you don’t treat them kindly. They need exercise, watering and feeding. And a good massage. Massage HURTS.
2. Cording is very painful, not inevitable but hard to stop once it’s started. Keep up the massage and stop being a wimp!
3. Constipation is a pain. Suppositories apparently are an infection risk and I won’t swallow a laxative (another irrational fear) so I’m downing chia and linseed seeds like nobody’s business.
3a. What a peculiar expression, ‘like nobody’s business.’ It doesn’t bear scrutiny - but nor does constipation!
4. It’s actually quite hard to appreciate and want to look after a body that’s betrayed you by getting cancer and is expressing itself with all sorts of real and imaginary side effects.
5. A shower seat is not a luxury, nor is it lazy. It’s been one of my best purchases so far, but isn’t so lovely as my maroon sheepskin scarf (I’m pretending I haven’t noticed it’s been reduced by £20 since I bought it).

Skin
1. Years of a strict (and ridiculously expensive) Environ skincare regime have gone to pot. The products are far too strong. My face is sore, my skin is peeling and I’ve got facial eczema. Over to Simple for the duration.
2. Layers peel off inside my mouth. It’s only a little sore so far but this dentalphobe is concerned about gum health. Toothpaste stings like hell. I have replaced the electric brush with an extra soft manual brush. Do I now resort to children’s toothpaste??
3. A spot can be permanent. After my op, I developed a huge acne spot on the edge of my jaw (I can’t see it but others can). Almost 3 months later, it’s still sitting there defiantly.
4. My scalp is sore. There’s no new hair growing but none lost - yet. I’m quite excited at the idea of a buzz-cut. Not sure I’ll feel the same about being bald though. A bridge to cross soon, apparently.
5. Why didn’t I opt for the cold-cap? It’s not guaranteed successful, it hurts like hell according to many users AND it adds a couple of hours to treatment time.
People
1. People care. It’s heart-warming. People want to know how I am. Result: every bloody conversation includes cancer and treatment. It’s getting boring because friends only have (and probably need) the one conversation; I have it with each one of them.

17. We are all different.

Instead of buying cards and presents, I got Dennis and me a journal each. They have Roll On Summer embossed on the front. I don’t know if Den is using his. It’s not in his nature, apart from meticulous details of each record acquired in whatever format since somewhere in the 60s. But he’s surprised me quite a bit now and then since September. If he has, there will be nothing about himself; probably just observations about me, my symptoms and my behaviour! I haven’t shown myself in the best light so far. I’m simply not a warrior!

My journal has grid pages and I try to keep a meticulous record on one side of medication, self-care, fluid intake and food intake. The right page is comments on how I feel, any changes (both physical and mental) and simple observations. I’ve maintained it every day, although recently there have been a few simple ‘ughs’ and only yesterday is virtually blank.

Everyone’s experience is different. I had an easy first five days. Steroids, of course. I ate better than normally, drank adequate fluids to maintain my 1.5L target, took the occasional cyclizine just in case I felt nauseous (I didn’t but I wasn’t going to risk it) and gained 6lb. That was a bit disconcerting considering my Christmas Day sales binge to re-equip a skinny person wardrobe but no worries - I soon lost it again once the steroid tablets ran out. Oh, this was going to be a doddle. How ridiculous and destructive to my confidence all that catastrophising had been.

I’d dreaded the steroids, having experienced a too-rapid withdrawal a couple of years ago following an inner ear problem. Now I just wanted them back. First the tingling began, then the heaviness so I could barely move. I felt like this was not my body. Going to have a pee was a major expedition. Constipation set in. I could do very little but feel utterly miserable from Day 6 onwards, tune into YouTube self-hypnosis (thanks again Michael) and ride it out. The last few days, I’ve not met my fluid target so I’m dehydrated; I’ve lost my appetite, so I’m weak and pathetic; and worst of all, I’ve felt anxious, resorting to diazepam when I really don’t want to.

I postponed my hair loss appointment as I could never have managed it. In the end, I rang the hospital for advice about the bone scan, which was scheduled for today. I didn’t fancy being radioactive anyway but physically I was pretty sure I couldn’t manage the trip. T answered the phone, to my surprise, asked pertinent questions, provided reassurance and clear advice. It was time to put some effort into all this (my words, not hers), stop lolling about feeling sorry for myself and help my body along (her words). She advised that I ate a snack (something that will fit in the palm of my hand) every two hours and drink, drink, drink. Add some movement, a change of scenery and, if moving around exhausts me, don’t return to the invalid bed.

So here I am, still in my pjs but not in bed, trying to use my brain again, eating every two hours, sipping energy drinks and suspecting that I hit the bottom of the trough yesterday and things may start to look up. It’s only Day 11 of a 21-day cycle after all. Roll On Summer.

16. My first experience of chemotherapy

Ok, I cheated. Nevertheless, all things considered and every other cliche along those lines, I’m proud of myself and Christmas Eve.

Woke up and took half a lorazepam. I hate taking new tablets. I can get a side effect just entering a pharmacy! Nothing seemed to happen. I’m used to diazepam and its gently mellowing effect. I’d packed my bag for every eventuality - distraction, constructive activity, panic management...I left little to chance. Of course it weighed a ton in addition to my ever-weighty handbag.

Maureen picked me up, concerned about rush hour traffic and more roadworks and we were there, parked and waiting, by 8.40. I took another half lorazepam. More people started arriving, almost all bright-eyed and bushy-tailed, which should have been reassuring but made me feel a bit resentful. A nurse came to collect me and took me into suite A where my name was on the whiteboard, along with my treatment details - and surrounded by other chemotherapy patients. Aargh! All I had to say was ‘I thought I was going to be treated in the overflow room’ and off we went, no questions asked.

First I took my remaining lorazepam. Still nothing. No gentle buzz, no reassuring calm. Nothing. It took a while for it to register that ‘nothing’ was nothing short of a miracle. I sat and I chatted with the nurse who injected vast syringes of steroids, anti-nausea drugs and eventually the red poison of EC treatment. I chatted with Maureen. Someone came round with a trolley full of Christmas refreshments and I ate Pringles and drank apple juice. Who was this woman?

The whole thing went quite quickly and smoothly since my veins for once decided to cooperate instead of dancing about. Then it was over. I even asked if I could stay till the drip was empty as this was easy hydration! Then, out came the cannula from my ‘perfect vein’ and I just had to wait for the pharmacist while Maureen popped off for a coffee. It was a long wait. It strikes me as odd that the pharmacists in oncology had to go down to the Boots franchise to get two measly lorazepams but that’s how they are organised.

I was fine when I got home, later had a benzo-nap and stayed resting for the remainder of the day. No bruising, no soreness, no nausea (and I had enough anti-sickness pills for a dozen patients), red pee. Otherwise, nothing. I realised that, perhaps for the first time in decades, I felt what I believe is ‘normal.’ It felt strange and it felt good. But I had no idea what to expect from now on. So far, I’d catastrophised myself into ill-health and been proved wrong. I’d just have to wait and see, first if the anti-nausea treatments worked, then if I’d get my steroid tummy, then if I’d get steroid withdrawal which has laid me flat in the past. More than anything though, I’m embarrassed to say I waited for the nausea to come.

15. Almost there

The next couple of weeks were tense. I heard nothing from the hospital about an appointment and, for both of us, the clock was ticking. I think it was a little harder, knowing now that I still had cancer cells in my breast muscle and that the delay between surgery and chemotherapy was past the optimum, well past. I found myself avoiding the essential massage of my near-dead arm for fear I might be massaging those cancer cells into action. Let them rest undisturbed.

I got an appointment to see Dr K at his clinic and he talked me through all the treatment regime and made sure I understood all the ramifications (ie side effects) before I signed myself over to the ministrations of the oncology team. That done, all I needed was a date. More waiting. I know I say it’s just a disease and I know I truly believe my challenge is less the cancer, more the treatment, but waiting was horrid. Eventually I rang and was told my first chemotherapy would be Christmas Eve. Even I could see the funny side, me laid out fighting off nausea and panic while all my friends celebrated with their families and got pleasantly pissed and stuffed. Well, only some of them - there’s a huge range from the abstemious to the raucous!

I went on my own for the preliminary appointment with T, one of the specialist nurses in charge of the breastcare unit. Den wasn’t happy about it but it was important to me to be seen not as the quivering obsessive at least once. Everyone accepted I had problems, as many other patients do, but I felt some of them oversimplified me, thinking I was scared of being around people. No, I was scared of myself as ever, other people only clouding the picture when (notice, not IF) panic hit me.

The phlebotomist left me with a giant bruise; the nurse was astounded at how good my blood pressure was (I forgot to tell her I’d taken a betablocker!) though she agreed my weight was way too low. T herself talked me through the whole process, showed me around, took me to make a hair loss appointment and generally did her best to reassure me. Dr K had left a prescription for lorazepam for use on treatment day. It was fine.

Well, it would have been fine for anyone without my obsession with vomiting. Nothing could convince me I could manage this without a major meltdown. I felt a bit of a nuisance, a bit hysterical maybe, and certainly obsessed with what I was sure was to come. Nothing reassured me. Such is the power of a phobia.

14. Now where was I?

I’ve joined the discussion forum at Breastcare Cancer UK. Looks like it might be useful. I posted my first enquiry and am waiting for sage advice to pour in as the last couple of days have been shit and I dread losing more weight through not eating much.

https://forum.breastcancercare.org.uk/t5/Chemotherapy/Questions-about-taste-appetite-etc/td-p/1261438

Two helpful replies and one telling me that she’d experienced none of what I shared. Well, lucky you. I’d have preferred not to hear that!

Oh, and I’ve postponed my hair loss appointment. My chauffeur has a stinker of a cold but, more than anything, I don’t think I’ll have enough energy. I have two days now to pick up, get some strength and face the bone scan. I definitely have learnt a lesson: I’ve looked up what it involves and I’m not catastrophising again. It’s such a waste of energy.

Meeting the teams

I got a call within a couple of days of the oncology consultation. True to his word, Dr K had arranged for the breastcare nurse at the private hospital to show me round. Anne took me as driving was still awkward. I’ve only just invested in my first automatic, having regretfully waved bye-bye to my coupe on the basis that the panache of a Thelma or Louise was less helpful to me than no clutch causing searing foot pain. Yes, I could just about have managed but would I be safe on the roads if I couldn’t yank on the handbrake?

The nurse was delayed with a patient so I talked with V, the oncology unit manager. Having almost decided I couldn’t risk losing all our savings (a tiny risk, but still a risk), I felt a bit guilty but V was aware I was undecided. She did nothing to persuade me to use their services, just wanted to know all about me. So I talked and talked...and talked some more. V made me feel like everything I said, everything I feared mattered to her. As far as it’s possible to feel good in an oncology unit, that’s how she made me feel. Of course, I left even less decided.

A week later, I heard from C who works at St James’s. I honestly hadn’t expected this level of support. We arranged an early evening visit on 21 November when things were quiet and C said she’d also like me to visit the actual clinic day a few days after. Maureen took me as she knows the place well and was able to navigate the multi-storey and take the shortcuts. I think Den would have liked to come with me but I was so glad he hadn’t. Bexley Wing is for every kind of cancer and I glimpsed a couple of patients who almost broke my heart: a man wearing a false face and a woman who’d lost her legs and was really struggling to get out of the place.

C is a Macmillan breastcare nurse. She, like V, made me feel that every little worry, every little detail mattered. I’d gone armed with a raft of questions, composed with my psychotherapist who’s been brilliant and proactive in her support. The answers were all positives: patient-centred treatment definitely. The scale of Bexley felt overwhelming, even when almost empty. It reminded me of a factory system, room after room of comfy chairs and drips. Where were the vomiters? Why did the patients look relaxed, if resigned?

C introduced me to various nursing staff who all gave me time and attention and had a reassuring suggestion to make about treatment. One nurse I mentally called Pixie went so far as to identify the overflow room as a place for my first treatments while I grew used to it and took us along to see it. Perfect. One huge fear I had was that I’d have a panic attack and not be able to escape. The thought of others witnessing my panic and embarrassment horrified me. I left, certain that I’d transfer to the NHS.

The second visit I managed to drive myself and took Den along. He admitted it was depressing but C reassured him, with her bubbly personality and genuine concern that they make my experience as bearable as possible in the circumstances. My decision was sealed when C explained to the nurse shadowing her that what we were talking about wasn’t just worry or anxiety, it was panic disorder that was completely debilitating if not addressed. That was all I needed. She got it. Obviously Dr K got it. I committed myself to being treated at the Bexley Wing of St James’s Hospital.

Then the long wait for transfer began.