52. Never Google

Day 4 and I’ve felt rotten, with my first headache since before all this nonsense started, A possible side effect, it seems. It’s only just gone, despite paracetamol, nurofen (which I shall regret), hypnosis/meditation and sleep.

Yesterday we had another walk - further but a LOT slower. Guess I’m missing those blood cells after all. It was good to be out though and I saw my first crocuses and daffodils, neither of which seem inclined to survive in our garden. However, Bramhope In Bloom always does us proud and they don’t overdo it like the LCC gardeners at Roundhay who excel at crocuses but overdo the daffodils, creating a bilious display that makes me flinch.

So this was my walk yesterday (early days for the flowers):

And this was sent to me by one of my cousins’ daughters, honeymooning in Australia: 

Can life get less fair!! Seriously, I hope Sally-Ann and Sam are having the holiday of a lifetime - she’s earned it.

Anyway, back to Google. I made a conscious decision at the start to google nothing and ask nothing I didn’t really really need to know. It’s stood me in good stead (apart from last weekend). However, today I was curious. Why is my temperature so low all the time? It was 35.3 this morning and 34.7 early evening. I never even possessed a thermometer till I was instructed to get one for chemotherapy and I only check my temperature in the futile hope of reassuring D I’m not at death’s door! I shan’t make that mistake again. Not only am I almost 2 degrees below normal temperature, according to this, I’m a candidate for hypothermia!! As if I don’t have enough problems. Yes, I did feel a bit cold (I should have felt the radiator and turned it on!) so I wrapped up warm, put on a hideous bright blue beanie and a fleecy top and had a bowl of vegetable soup. I’ll check with nurse T tomorrow when we have our phone consultation but I am certain I’m suffering from nothing more than googlitis. 

Now get me to that beach...

51. From the sublime to ridiculous

What a wonderful day - till about 4pm when I began to sag a bit. Almost exactly 24 hours after the steroid infusion. Oh well. I got in a lovely short walk, most spent sitting on the stone wall on Leeds Road, chatting with Dennis. Then lovely, almost tasty pizza and stewed apple I could taste (wish I could have found some cloves); then reading in the garden.

How can this not lift your spirits? Ok, a bit of tidying up is needed but we’ve had other things to occupy us recently.

It was balmy, with a gentle breeze so I went bare-headed, the breeze wafting through my locks (well, caressing my scalp) till Kiera reminded me of the risk of sunburn. Sometimes you forget about the practicalities so back to the beanie. See my tiny buzzcut? I’m very fond of it but I’ve felt my first bald spot, above my right ear. I’ll be sad to see it go. I don’t think I have the confidence to just wear bald (except in the hospital where I don’t care and you can spot the wigs a mile off - why does T let them choose such unflattering wigs?) But it’ll have to be the uncomfortable wig when I go out.

I felt normal and good. Then as evening progressed, along came the price I pay for steroids: bend-over-double stomach ache and not even lansoprazole has touched it. I suspect the 3 days of oral steroids gently eased me away from this on the former chemotherapy regime because, although I was on double dose of lansoprazole for 7 days, I didn’t get much discomfort. This is just ridiculous, I can’t take my other meds. Ah well, only 8 more weeks... Sorry to moan.

50. A quickie while it lasts

First Paclitaxel yesterday, accompanied by homoeopathic treatment prescribed by my dear but long-neglected friend Angela. I slept without recourse to YouTube, woke at 6 and I mean really woke. I’d eaten my breakfast by 8 and have spent two hours catching up on emails and had a snack. Weight gain here we come. The only blip is that I can’t for the life of me recall if I took one of my essential meds and daren’t risk doubling up. It’s 10.30, time to wash and dress and attempt a walk to the end of the cul-de-sac and back.

Ok, I had steroids yesterday and this may not last but let’s get it recorded while it’s real! Yes, I know I’m almost bald and 40 years older at least but I’m feeling cheery :).

49. Doubts...hopefully assuaged

My positive approach to the breast cancer itself has been genuine. I’ve never considered that breast cancer might lead to death, not for one moment. I don’t know why such certainty - perhaps it’s been a coping mechanism, perhaps my Land of Denial has been duping me. More likely, my obsession with being or feeling sick and the associated dread of anxiety and panic attacks have been a huge diversion. This has all worked to my advantage, even when I’ve been lying there Dementored (it truly doesn’t get worse than that!). I’ve never felt at risk from breast cancer. How good is that?

Now things have changed. Dr U talking about my cancer as though it was still there and still a major problem was a shock to me. I’d been told by nurse T I was officially cancer-free, that what lay ahead was to ensure any microscopic vestiges are destroyed and there is no recurrence.  So am I or aren’t I?His comment about how ‘dangerously ill’ I’d been was another shock. I didn’t feel ill; drained beyond belief yes, but not ill. But unfortunately I’ve not been able to avoid thinking about it since, particularly as he said it was ‘likely’ it could happen again. Did he mean the alarmingly low blood count? I’ll be checked weekly now so surely the chances of it happening again will be lower because I’ll be monitored, not left for 18 days. Did he mean the infection/neutropoenia? I’m not only going to be more alert and not take the slightest risk, I’ll have a stronger immune system (relative to last week’s disaster, at least).

But the damage has been done. The cracks in my certainty have appeared. I find myself thinking about what might have happened had I not rung the hospital just to appease Dennis. Something inside me shrivels at the thought of only a 50% chance of recovery - because I realise that means a 50% chance I could have died. I joked about Death By Runny Nose but the reality isn’t a joke. Then I think about Dr U’s eagerness that we don’t interrupt the chemotherapy. Why didn’t I ask if there were any risks? I had a long list of questions from Dennis, which I adapted a bit. Plus he was running almost an hour late and, though he answered all my questions, it was obvious he wanted to move me on. Plus I’ve adopted a policy from the start of not asking what I don’t want to know.

I find myself in a contradictory position now. I don’t want to know but I realise that I should know. It’s good sense. I find myself experiencing tiny waves of anxiety about what lies ahead. I thought being halfway through would be a major turning point for me. Instead, my heart just sinks at the prospect of 9 weeks of continued vulnerability as ‘one of the unlucky few who don’t respond well to chemotherapy.’ I’m beginning to understand what that doctor on Tuesday meant. But just how vulnerable am I? I appreciate I can’t join the ranks of those who sail through it barely noticing the side effects but I was looking forward to being more active, driving, popping to the shops, meeting people - things I’ve so far only managed on rare days. Now I’m worrying about the new drug, Paclitaxel. I was originally optimistic. Now I have no optimism. I’m anxious about tomorrow (thank god for the Lorazepam). I’m anxious about afterwards (no additional steroid days to reinforce the anti-sickness treatment). Basically, I think I’ve lost my capacity to bury my head in the sand. How do I get it back?

I think I’ll hold back on pressing the ‘publish’ button till I’ve had time to think more.

And so I did. I’ve had my first new treatment and will be watching myself like a hawk now. I have had a small meal though, which is promising. The session was LONG. Poor Carol - we both expected to be out by 4. They hadn’t started by 4 and we went in at 1.50. First they needed a new blood sample (90 minutes at least till the results came back). Then they had to gauge the dosage. Then I had to be prepped and wait 30 minutes for that to work. Then I had to be got ready for the actual drug and that was in a 1-hour drip. Everyone else had gone apart from one man who’d come a long way, missed his blood tests but refused to leave till it was all sorted. Good for him - I gave him half my sandwiches lol.

However, Dr U popped to see me - a real sit down and chat pop. They hadn’t transferred my original prescriptions so there was no lorazepam. WHAT?? Presumably they consulted him. Anyway, he asked how I’d been over the weekend and I decided to be honest. I told him how my spirits had dropped and went through each of the issues noted above. He was taken aback that he’d given that impression and basically clarified everything ‘better.’ Cancer has gone. Halfway through chemotherapy and weekly visits from now will ensure everyone is alert to early warning signs. So... I just need to get through the next 24 hours without nausea and I’ll be back where I was before The Runny Nose. I’ll be satisfied with that :)

48. Home, my nest

Anne came to fetch me Wednesday teatime - yet another unquestioned and generous gesture from my friends (Kiera had brought Dennis in to see me the day before). I couldn’t manage without my lovely friends.

I was completely fazed by the drugs I brought home: one every 5 hours for x doses, then twice daily; antibiotic three times a day at equal intervals; potassium (beyond disgusting - imagine table salt being tipped in your mouth), plus my usual stuff. I drew up a rough chart and realised that most would be gone by Sunday so let’s not worry too much.

Thursday I was determined to have my first lie-in. Unfortunately, I’d lost the knack of sleeping so that didn’t happen. I did have a lazy day though. Unfortunately I was still awake at 4am this morning! Maureen kindly offered to take me to my clinic appointment today. Honestly, there’s me in my woolly beanie, chinos and Skecher boots, accompanied by this elegant woman in black suit and heels - and she’s a fair bit older than I am and only recently had a knee replacement - which was why she was wearing her ‘flatties’ (2.5inch heel?) Where’s my pride? Well, till all this is sorted, I’m opting for the bag lady look.

At clinic, I saw a new consultant. He was very nice but he focused more on the cancer than I would have liked and his opening question was to ask if I realised how dangerously ill I’d been? Well, no. I knew I was ill but how can you be dangerously ill and feel fine - so fine that you eat more and gain weight? We will continue as planned with the new drug Paclitaxel but at a reduced dosage. We should start Monday and plan to do so unless my blood count is still too low. Dennis had a list of questions but I wouldn’t let him come to the hospital as he was up half the night coughing. I’m safe enough with my armour of antibiotics but other patients might not be. However, Dr T answered the questions honestly. Could this happen again? Yes. What are the chances? Likely (!!!) BUT I now have weekly contact with the hospital so maybe less likely...

So, I’ve been dangerously ill and not realised it. I’ve agreed a plan with Dennis to allay some of his fears - I will take my temperature twice daily and promise to contact the hospital if my temperature rises to 37.5, even if I only have a broken nail. I will stick to eating three meals a day (I’ve had two for so long) to try and gain some weight, which I’m sure would help, AND I will keep to my fluids target which I’d let slip. I’m really not very good at taking care of myself in some ways, generally the most important ways!

Meantime, I received this out of the blue from my lovely Auntie June and cousins Tracy and Sharon:  

Yellow roses and chrysanths (ok, these are not chrysanths but they’re close) were Mum’s favourite flowers. They have really put a smile on my face.

Monday is chemo afternoon and hopefully will go ahead as scheduled and the nasty Zolendrate has been deferred until the Paclitaxel sessions are complete. Maybe my system is just too fragile to take all this internal battering? Carol is taking me but I may have to say no as she has a really nasty cold and, though she won’t be infectious in that way, if she still has her cough, it might affect the other patients’ safety. Carol a health hazard - rofl.

Now I need to find a way to take the final potassium drink. This afternoon’s took two hours to get down, including trying to mix it with some jelly (too slow) and mixing it with my Mean Green energy drink (successful but slow) and a little too acidic. Any suggestions gratefully received but, being me, probably ‘Yes but.’

47. Midnight Mystery Tour

This must be the highlight of my time in hospital. St James’s is the biggest teaching hospital in Europe. Everywhere you go, there are facilities and whole wings named after local and scientific celebrities, donors, grateful patients. The original workhouse is now the Thackray Medical Museum and the original hospital is now surrounded by enormous new buildings, a veritable maze one might just get lost in.

And that’s what happened. 8pm became 10pm. I wrapped myself in my parka, lay on the bed and dozed off, to be awoken by a new face at 11.45. The young woman explained that they couldn’t wait any longer (I assume for a porter) so she had been sent to collect me and take me to my new room. Unfortunately, this was in another wing. Wheelchair, lifts, ramps, more lifts. Pauses for conversation and congratulations as she had just this week qualified and the few people we passed obviously were very fond of her.

We eventually arrived in Lincoln Wing. Total darkness, all doors locked, not a sign with a number below 40 and we wanted Ward J23. I sat patiently on my own in ghostly quiet corridors while she set off down some locked corridor in search of a human being. Eventually, she came back and brightly announced that she’d been given the wrong information. We wanted Chancellor Wing. Back we trundled, up ramps we’d slid down earlier, back to lifts. It took 35 minutes to reach our destination, the breast care unit, with an enormous room for me, offers of hot chocolate, anything I wanted...I just wanted some extra blankets and permission to get between the sheets still wearing my joggers. Sleep was all I wanted. No more drip alarms to go off, no more interruptions for blood pressure and temperature (huh, 5am in they came)...just let me sleep! The room was right by the hospital generator  unfortunately. The view was tremendous:

Next morning, I was visited by L, the child doctor. Knock 50 years off me and I’d have been in love. He explained my blood count was still too low but they were aware that I was keen to go home and the original fever was all under control. Would I have a blood transfusion? Yes please!! He then proceeded to scare the wits out of me with all the things that might go wrong and again I had to sign my consent. I had no idea how slow the process is: 2 hours per unit and I needed 2 units. I managed to eat some lunch but the idea of blood being dripped in while I was eating didn’t sit comfortably with me. When it came to tea, no chance - a good excuse as the food on this ward was not great. It made the meals up on level 5 seem like haute cuisine. Same suppliers, same meals, just left standing to acquire a nice extra hard layer, over cooked to mush, generally inedible!

46. Just a runny nose

I was told to pack an overnight bag. Isn’t it natural to assume from that that I’d not be staying long? I’d read in the chemotherapy guidance that, should something like this happen, most people will be given an antibiotic drip and then sent home with oral antibiotics. Dennis went home late morning, expecting to collect me Sunday evening.

People arrived, people went home. Not me. I was put “in isolation” as they tried to locate the source of my infection. Dennis came again Monday and stayed overnight, before I packed him off home again. I felt fine apart from lack of sleep and boredom. As soon as I fell asleep, the drip alarm would set off or some kindly nurse would apologetically creep in to do my blood pressure and temperature. They were the problem. Despite all the antibiotics being pumped into me, my temperature wouldn’t settle. Worse, my blood pressure was mostly in the amber range of low, with an occasional slip into the red. Every test result came back clear, yet I was obviously still at risk.

I haven’t looked up neutropoenic sepsis - maybe I will when I feel I’m up to considering the realities of what happened. My basic understanding is my runny nose was an early sign of a cold, I had too weak an immune system to deal with it and... that’s about it. I don’t understand how the antibiotics can work when the immune system is so compromised - I thought the whole idea of antibiotics was to mobilise one’s body’s natural defences. Regardless, they began to work.

A three-doctor visit resulted in some changes: a change to oral antibiotics (maybe I could go home? Fat chance); detachment from the drip (a rather astute child-doctor suspected the drip was making me lazy about drinking and that had to change); and a move to the Red Tray (extra portions and two very unhealthy additional snacks - all wasted as most of it was tasteless mush to me).

Problem: the oral antibiotic was almost the size of a suppository and there was no way I could swallow it. It was too thick to break, almost impossible to cut, so they ordered in the liquid version for me. 

The other problem was that my blood cell count was still way too low so I couldn’t go home but nor could I stay in the assessment unit. There were days when they were run off their feet by poor chemo patients with the most appalling hacking coughs. A bed was found for me off another ward (still in isolation just in case - phew! I’m not sure how I would have managed on a proper ward - too afraid to sleep in case someone was sick, I’m guessing). 

So I packed my things, ready to be moved at 8pm.

45. Lost weekend

As I said, we’re all warned, Dire warnings about the danger of ignoring a high temperature (specifically 38C).  But that happens to other people. A runny nose doesn’t qualify for hospital attention! I only rang the emergency number to get their assurance it would be fine to ignore 37.7, really just to ease Dennis’ fear I might not wake in the night to notice I’d reached the dreaded 38.

So I have a series of firsts under my belt now: my first stay in hospital, my first drips, my first blood transfusion... Plus the public admission that My Husband Was Right. It doesn’t even hurt to say it - had I waited, I’d have developed something like pneumonia and be fighting for my life with an immune system that can’t fight. There. Said it.

Lisa, our lovely neighbour, packed both kids in the car at 10.30 and drove Dennis and me to St James’s. It was that or an ambulance (that would have been another first, but one I could do without, thanks). By the time D and I followed the vague instructions about Level 5 Bexley Wing (no ward number and no phone contact - I left all that at home of course!), wandering up and down dimly lit, silent corridors with every door locked and no human in sight apart from a lonely smoker outside the entrance, I was beyond shattered. Apparently, my temperature was 38.6 and my blood pressure registering in the red zone of low.

I confess I did feel very weak, even a bit ill, by then but that’s no reason to be left in peace. We were shown to Room 9 (apparently it was an unusually quiet night), I collapsed on the bed fully clothed and let them do whatever they needed to do. I had to go into the bowels of the hospital for a chest x-ray at 1.30am, then back to the assessment ward. By then, I was shaking so violently I couldn’t control any part of my body. I assumed it was a panic attack and I just lay and shook miserably for about two hours. Oddly though, I wasn’t hyperventilating. It didn’t feel right.

I think I went to sleep about 5.30 (Dennis was sitting in the ‘armchair’ watching me like a hawk) but that sleep didn’t last long. Another panic attack after I’d been rudely woken to have my blood pressure and temperature taken (every hour at that stage - who needs sleep??) really broke my spirit as I haven’t had a real panic attack since September. It’s like I’ve not had the time! Two in 6 hours was just too much to bear. Why it mattered so much, I’m not sure - I’m ill (I admit it), I was in a scary situation (though I didn’t feel scared), I was not in control of everything. A lot of people might have a panic attack!

                                           

 

Anyway, much to my relief, the doctor later explained that it wasn’t panic - it was rigor, a symptom of my condition (according to my discharge notes, febrile neutropoenia and neutropoenic sepsis of unknown source). After that, I just allowed the shaking to happen till the antibiotics began to work and they stopped. So...my record of no real panic attacks for almost 6 months still stands (with the obvious cheating in that lorazepam just before chemo removes any inclination towards panic response - great stuff).

She decided to treat me for neutropoenic sepsis without waiting for test results and I found myself attached to a drip with a constant supply of antibiotics, as well as saline, saline and glucose and finally saline, glucose and something else I was deficient in - nutrients!!

44. Something so simple

I’m generally fortunate when it comes to colds. I’m a great believer in zapping a cold with 2000mg vit C for two days and it works. Most of the symptoms don’t develop and I’m left with a mild cold and (invariably) a cold sore in my nose. Don’t even try to imagine the difficulties and the pain of that if I can’t reach it to dab on Zovirax. It takes a minimum of 10 days to clear. Basically though, colds aren’t a problem for me. If it’s psychological, I don’t care. It works for me.

Considering all my health issues relating to mental health, I’d expect me to be a hypochondriac but that’s only tummy-related fear. We didn’t even possess a thermometer till I was instructed to get one in December.

So here’s how it goes. Towards the end of week two of chemo, I’m at my most vulnerable in terms of infection. I have strict instructions as to what to do should I feel ill. I practically had to sign my name in blood, agreeing to follow the instructions. I had horror stories about people who’ve tried to brave it out. Message - don’t!

Yesterday my teeth felt incredibly sore but I attributed it to the sore gums and mouth rather than a first alert that a cold was coming. This morning I woke to a streaming nose, tender neck, sore nose etc. I tried First Defence since nurse T didn’t say no when I asked about it - she just looked a bit disparaging. I wish I’d asked about vit C. Online (yes, I succumbed), there’s contradictory information so do I risk it?  Meantime, my usually low temperature (around 35.6) has crept up steadily to 36.9. That would suggest a mild fever but the magic number is 37.5 - then I have to monitor it and contact the hospital if it reaches 38.

I’m assuming Dennis has picked up a cold (he never gets them but says he feels a bit coldy) and passed it on, despite his rigorous hand-cleaning routine. All I can do is wait and see if the thermometer reading continues to rise. I don’t feel ill or even unwell, rather odd considering the last week, and I find it hard to believe that something so simple would require immediate admission to hospital and a blitz of antibiotics. But they wouldn’t drill it home so frequently if the risk weren’t there so I have to take it seriously. I guess it’s watch this space and cross fingers and toes. Unfazed by breast cancer but felled by a common cold?

Shit, it’s 37.5! I’m going to be glued to the bloody thermometer all evening and procrastinating!

43. One step forward, one and a half steps back

After the lovely energising (bit of an exaggeration but let’s stay positive) sunshine yesterday, I found myself Dementored for almost 4 hours last night. I just lay there, barely moving, barely thinking, wondering when it would pass. The lights were on, my hands were cold but I couldn’t summon the energy to get them under the duvet. I can’t say I felt scared but I did feel increasing anxiety as I didn’t sleep, drift or anything but just lie there! Took me till about 3 to be able to sit up, sip some water and decide I’d better have a pee and clean my teeth.

I was fine this morning, I thought, but I’m almost overwhelmed by a strange fatigue and so I’ve gazed wistfully out at today’s blue sky and wished I had a backside that could be kicked. HOWEVER, I ate food with flavour today, food that didn’t taste of mush or soapy slime - a simple pizza! Half gone, it’s lying waiting for me to get the urge to try it cold later. There was only so much I could manage before my sore gums protested. Oh bliss. A simple tomato and mozzarella pizza has brightened my day. That and a Fry’s Turkish Delight. 

Next I’ll be trying a toasted bagel and some vegan cheese that’s been recommended. I’m not sure how or why a bagel may differ from the soapy gunge bread and crumpets have become but I need to keep trying to find stuff that’s sufficiently palatable and I saw a toasted bagel recommended under foods recommended during chemotherapy. Seemed a safe choice (unlike the yellow pepper I’ve bought, planning to nibble slices during the day instead of Skittles). Huh, watch this space. 

Now I’m off to search for some flavourfree toothpaste as I’m running low. It’s an exciting life isn’t it ;) 

42. Sunshine and fresh air

I keep saying there’s no room for vanity at the moment. Here’s the proof:

Personally I think I look like a bag lady without a trolley (actually, that could have proved handy). I wore joggers over my pjs (didn’t want to expend precious energy on getting properly dressed), tucked into my baggy boots, all topped with my fleece-lined parka buttoned to the neck, a cashmere beanie AND a wind-proof hat. Armed with a cushion, bottle of water, a book and my mobile, off I traipsed across the lawn to the only bit of sunshine - conveniently where the garden seat is. Once I got rid of all the spider webs, I was just about done in and missed the cushion, landing on my non-existent bum but past caring.

It felt great. Fresh air, direct sunshine, a mild breeze - definitely worth the effort. I watched the red kites, gazed across the empty fields and refused to think about when they plan to start building, turned my face to the sun - and occasionally read a paragraph or two. There’s something slightly surreal about reading a novel set in the extreme heat of the Australian outback, wrapped against the Yorkshire elements! Unfortunately it’s only February and the sun is too low so I only got about 40 minutes and then had to go in - no sunny spots on our lawn big enough to move a seat to:

The poor cat was completely thrown. He’s so used to having it all to himself that he kept stopping and checking me out. Then he did his usual bolt across from A to B and hid under a shrub, emerging for a suspicious sniff before bolting from B to C and over the fence to find a rabbit or two. He definitely did not appreciate this invasion of his space but I’ll make up for it with a lot of chicken, the taste of which has turned to something I prefer not to dwell on. Another staple gone from my meagre diet. Broccoli still tastes good tho.

But it’s only Day 10. Yesterday I couldn’t have made it to the patio door. Just getting from the shower back to the bedroom was a struggle. Last month, I couldn’t have made it down the stairs! Keep thinking forward, Jan!

41. I have a beef with Macmillan

Macmillan offers an amazing support service but what on earth are they thinking about with their TV advertising?? The current one, ‘Cancer doesn’t care...’ is so alarmist. It doesn’t tell us anything people don’t already fear or know. It definitely reinforces the fear element. Yes, cancer is a terrible disease for many people and the treatment is beyond awful and it’s important to know Macmillan is there to offer so much support in so many ways. But this ad makes me angry. It feeds on fear.

I complained about their previous advertisement which showed vomiting - pointed out this was a common phobia and was insensitive and unnecessary (they didn’t show the reality of people having diarrhoea, after all).

https://www.civilsociety.co.uk/news/macmillan-ad-ninth-most-complained-about-of-2017.html

I got a reply justifying their ad on the grounds of their consumer research - just so happened it was a reply to someone else’s email about the same thing! They claimed their research audience thought it was realistic and authentic. That doesn’t stop it being a living nightmare for emetophobes like me. Nor does it make it essential to portraying the disease. Apparently it was one of the most complained advertisements of 2017-18.

I don’t expect upmarket or twee tampon/Tena-like adverts. I know they depend heavily on people making donations and that’s their objective. But I wonder if they should reconsider the advertising company they use and their prospective audience - cancer is dark enough without seeing it on tv daily, reinforcing fear. We know it’s bad - it doesn’t make Macmillan look any more effective to rub it in. And there are people like me who are lucky enough to be able to see it as ‘only a disease.’ It’s not a death sentence necessarily.

I don’t think I’m unduly sensitive. There must be better ways of advertising something so awful. OK, the short ads where they get good news are a bit galling for someone like me - but I wouldn’t want to push my experience onto other people. I don’t want to hide the truth but there are different realities for different people.

40. Things to look forward to...

The last couple of days have been vile. I’ve no idea how much longer it will last or if it will be like last time, fluctuating between ok and total fatigue, so I’ve been thinking about things I might be able to look forward to:

1. No more EC treatments so
2. No more chemo-troughs where I’m not sure if I’m awake, alive, in my own body.
3. Maybe my mouth will improve and my saliva will return to normal. That means not only a nice soothing coating of mucus on my gums and cheeks but maybe a return of my own tongue, one that fits, one with tastebuds that can detect more accurately and not make me feel my mouth is filled with slime. This foaming saliva is a real appetite-killer. It would be nice not to have this numbness in my mouth too - a bit triggering to be honest.
4. I long to be able to enjoy bread, toast, biscuits again - just simple little things. It’s not asking much is it? Currently porridge and rice crispies are haute cuisine for me. There isn’t even something really simple I can use to get tablets down (water doesn’t work) so I’m really struggling, particularly at night.
5. The energy to ... well, just some energy please. Just to get me further than the bathroom. The sky was blue today, the sun shining - I couldn’t do any more than look out of the window.
6. A little bit of weight. Ok, quite a bit of weight please. Maybe I could get out for a short walk, some fresh air, eventually some exercise to rebuild my wasting muscles. May I have my bum and thighs back please?
7. Of course the biggest thing to look forward to is the appointment I was sent today: 10 January 2022. Seriously.

This presupposes that the weekly treatment I move onto is better tolerated by my brain and body. The side effects listed don’t seem to be markedly different from the EC side effects, except hair loss is inevitable (I’m still holding on to my stubble) and there’s a possibility of numb hands and feet. But the prospect of remaining like this for a further threee months doesn’t bear thinking about. I’m going to my next oncology appointment armed with questions this time. There’s only so much time I can stay with my head buried in the sand. It’s served me well and got me through so far but maybe it’s time to face a few facts. The problem is, no one knows the facts - everyone responds differently. Look at me - I’ve responded differently three times to virtually the same treatment.

39. A bit of fun

Got to get this in before the trough hits any time now. Georgia’s been wanting to bring round her wig for ages but bugs and family pressures, plus a lovely consideration for my needs, have delayed it. After school today, she scrubbed up (bless her) and brought it round. I LOVE it. If only I had the personality to carry it off.

 As I’d wear it (selfie)







                    As Georgia recommends (posed)


I promised to send the Macmillan nurse C a picture but that was 6 weeks ago. Maybe I will....

What I’d really love right now is to taste something. I’ve tried all sorts. Now resorting to Skittles as they’re smaller than Starbursts. Chocolate is such a let down I can’t bear knowing what I’m missing. My weight is too low, considering this is the steroid boost, so I have to get those calories in when I can. I tried those baked crisps - nice and salty but turn to mush - so am returning to basic crisps, the fattiness of which repelled me. Right now, a thumbs up!

Today I’m sticking with just water. Managed abut 800ml so far. Tea and fruit tea just don’t suit my mouth/f***ed up salivary system and make me feel worse.

But the pink wig has made my day :)

29. Hell is.... not recommended. To hell with it, I’m ‘publishing’

I doubt the wisdom of writing this, with all my good intentions of staying positive and avoiding the pity party. I’m not that strong! But this blog is meant to be therapeutic for me so, if I don’t find it therapeutic, why keep it? I shall try to just keep this in draft, for my eyes only. I can barely hold a pencil so this is my outlet - 2 finger dabbing at keys and a lot of autocorrect.

This is cycle 2 of 3, Day 7, and it’s worse than last time. Maybe it was adding the zolendronate to the mix? Too much going on to cope with.

I was genuinely scared this morning. I’d barely slept. Michael in various forms failed to reach the parts that need reaching. I lay in a stupor from my first pee at 6.30. I know i’m Ok while i can still get myself to the loo but there were moments when i could quite easily have wet the bed. I’m still choosing to get to the loo, so I’m still in control.

Scared? I felt like i was almost buried alive. I could barely sip water through the straw, let alone swallow it. I know i’m dehydrated and that’s part of the problem. I felt nauseous. How to get down an  anti-sickness pill when i was too afraid to put even tasteless banana in my mouth? I just lay there, stupefied, utterly miserable and unable to make a simple decision. Add anxiety and fear to that mix and i can safely describe it as my idea of hell.

Den came in at 10. I waved him away. Couldn’t even speak. Just grunted and gestured. I could tell he was anxious but i couldn’t care. First i drank more water and took a 3mm bite of bananyuk to get the cyclizine down. More water. Give it time to work. Then same again with a diazepam before panic took over. Then loo. Then a cup of tea and a rich tea biscuit. Then my abdominal cramps were so bad, back to the loo and the decision to stay all day if i had to.

Meantime, D changed the bed (if only i could laugh - this is a domestic task that defeats him. Not just the duvet cover - he stands on the mattress to fit a fitted sheet. Surreal logic) and i had a minor bowel movement, enough to relieve the pain and sickening feeling. I reeked. When did i last shower???? So i sat in the shower, washed my stubble, creamed my scar, massaged the right places. Beginning to lose pubic hair now. Why not leg hair, stuff you want rid of anyway?? I gather loss of pubic hair can present mini-practical problems but I’ll cross that bridge when I meet it. Just please please please save my eyelashes. Please.

I feel a bit better for being clean and having done some stretches. Basically it’s like my whole body is coming out of local anaesthetic. That horrid warm, thick numbness. I had to touch my skin to make sure I was here. Even the tips of my ears were affected. And - the major problem - it felt the same inside my mouth. That’s phobia territory. No wonder I felt so frightened.

So now I’m back in bad, completely worn out by the shower. I’ve drunk varying amounts of 3 mugs of tea and managed 2 rich teas and it’s half past 2. Guessing no Sunday roast then. I need another pee and some mouthwash. Maybe tea, even decaf, isn’t such a great idea but you can only dunk in hot tea. I know I should make more constructive plans to keep my head busy, away from I-could-still-be-sick thoughts.

Last time, I picked up day 11. Great. Only 4 more days of checking my nose still belongs to me.

And it’s not helpful thinking things like ‘maybe i could die now.’ Ive no intentions of dying. Just wish I wasn’t here for now.

38. Still on a roll...

Thursday, last steroid day... who knows what lies ahead? It’s been different each time and I’m not going to bother fretting what if... What will be, will be. 

Yesterday I managed a brief catch up with Judy. I couldn’t for the life of me remember why I wanted/needed the appointment but it was good to touch base at least, even if I couldn’t reach into my brain for what I’d originally felt I’d benefit from talking about. Then I went to book group. That was so good. No cancer talk, no reaction when I yanked off my beanie to reveal an increasingly transparent buzzcut. Just book talk, chat, company. It did me a power of good, I’m sure, but I just folded up as soon as I got home. I had to eat by 5 (steroid rule) but I needed a nap. Compromise: probably the most annoying Michael Sealey session ever (if only I could remember which ones never to use again) and Dennis waking me at 5.30 with my meal. 

Angela sent me a package of homeopathic remedies to help - but I need to clarify the instructions. I know originally one was to help with my difficulty swallowing. If I could get that resolved, I’d be better hydrated. I can see my fingertips shrivelling again already. 

 

Monday, after drip.                            Thursday, dehydrating

Today I went button-shopping, accompanied by Dennis (who seems a bit anxious about my driving for some odd reason. I’m actually ultra-cautious right now, for obvious reasons). I haven’t been over to Bonds in Farsley since they changed premises so that was a treat. Unfortunately I hadn’t the energy to explore. The old shop was a tip - that was the sheer joy of it. Everywhere you looked, something would catch your eye and I’d come away with stuff I didn’t want/need/maybe not even use.  This is all neatly arranged and rather stylish. The buttons were downstairs and that was hard enough. As for selecting the buttons...chemo-brain doesn’t lend itself to selecting when there’s such a vast choice. The irony is I could possibly have bought two cardis from George for the cost of the buttons!! Still, Lottie Anne can be sure she’s not dressed in the products of slave labour (as if she could know!).  Unfortunately I forgot to buy matching cotton. Oh well, can’t hold too much in this brain right now.

Then the most freaky thing. I am so fed up with mashed potato, I fancied pasta and decided I’d do it myself. Hmm... I’ve never made claims to enjoying cooking but I know the basics. Well, I used to know the basics. I left that kitchen like a bomb had hit it. Poor Dennis has been mopping up spilled pasta water, cleaning a scalded glass saucepan - and tho it was edible and tasted a bit of something, it was hardly haute cuisine.

I also checked in with Lisa (so far away, next door....) and hopefully she’ll pop round for a cuppa tomorrow before whatever ugh stuff the chemo trough brings. 

37. Ding ding...round three...

It’s been an odd day. No anxiety about going (even before I took the 2/3 Lorazepam - unreliable pill cutter). Kiera arrived early and I was running late but the timing was perfect. We eventually found a parking spot on L3 and I only had to stop twice on the stairs to let my blood reach my brain again!

A much shorter wait and much more conversation going on, which made me feel comfortable. People seemed to know each other. A young woman sat next to me and pulled off her bobble hat to reveal the shortest soft dark hair so I smiled and said ‘Snap, only you can see through mine.’ We talked a bit about the hair loss - hers is growing back now she’s having herceptin treatment. Sadly, I’m not allowed herceptin (something to do with the hormones) and have Paclitaxel which guarantees baldness, or alopoecia as the literature calls it.

My perfect vein failed in the perfection stakes today and swelled up - I’d normally have a spectacular bruise but I don’t think I have enough of the right corpuscles or platelets to spare so I just have a sore lump. Eventually the nurse chose a vein at the joint of my thumb and finger, Unusual. It was sore through the whole process but I kept quiet.

Then she gave me the anti-emetic pill, after which you have to wait 30 minutes. Common sense would suggest giving that immediately, then faffing about with veins and stuff. We could have saved a lot of time. After that it was just routine, but with side effects. The initial steroid hit is very disconcerting as it hits the nerve endings. Your buttocks and all the soft tissue of your bum and genitals are hit by a million needles, but it wears off quickly.

Then in went the poisons. First two tubes of E, then 2 of C. Each of them was a little painful, which is new, but nothing to moan about. I did find the last lot harder to take: my head felt very strange and prickly but I knew it would go when she flushed me through at the end. AND I got an additional litre of fluid in me. YAY.

My trolley, ready for anything

On top of that, I had a free foot massage from a Macmillan volunteer - thank you and sorry for making you jump but I did warn you I have an exposed nerve that will react if you touch it. I also drank half a cup of tea (the lady sarkily measured the milk in a teaspoon but it was perfect, just the tea was too strong) and 2 ham sandwiches (Kiera ate the rest). They certainly know how to keep the chemo patients happy ;)

And then we came home... Now I am stuffing my face with a bit of this and a bit of that because I have steroid appetite. I can’t risk a meal even tho I know it’s physically impossible to be sick - there’s knowledge and then there’s belief and that wins out every time, dammit. I’m too restless (steroids again) for a nap or to settle to anything meaningful. I have decided that, since most things taste of soap, I’m going to try a jam sandwich! At least it’s calories...

36. Doubts

When I started this blog, I promised myself I would be honest with myself. Anything I wanted to spare people would be left unsaid or vented and kept private. I also wanted to avoid talking myself into depression or self-pity, moaning on and on about how awful everything is.

I’ve not struggled with the honesty. I have struggled with the moaning and have to keep reminding myself that I’m one of the lucky ones. I heard myself saying it to Anne today and feeling surprised that not only could I say it, I also believe it.

It doesn’t stop me from feeling shit though and this has been a tough few days. They’ve gone against my expectations. The early emergence from the chemo-trough led me to expect that, by week 3 in the cycle, I’d be ok, if not fine. It hasn’t worked out like that. Some symptoms (taste, salivating, sore tongue/mouth) have actually got worse and fatigue doesn’t quite cover the utter exhaustion the simplest activity like getting dressed or walking upstairs brings on. I feel a little embarrassed, as though I ought to be able to do better than this - not a constructive attitude right now.

And there’s another effing cancer advert on. What is it with tv and cancer??

So I find myself in a psychological low spot and it’s hard to remain positive from down here. Tomorrow is round 3 of three. I’m not scared or anxious about it - I actually wonder if the steroids will give me a bit of respite. I just have no idea what to expect. Round 2 has shown that, in my case at least, it doesn’t necessarily get easier. There’s a kind of superficial numbness in so many areas of my body that I find quite scary, especially when it affects anything in my mouth. Am I condemned to another three weeks of this? I know three weeks isn’t long in the grand scheme of things but it’s hard work when it exacerbates the underlying anxiety that never leaves me. Then of course, there’s no guarantee it will suddenly disappear once I’ve stopped the Epirubicin and Cyclophosphamide. Maybe I’ll be one of the unlucky ones who continue with their side effects for months, even years.

Then I move onto weekly Paclitaxel treatment, briefer and with fewer side effects. BUT - and this is where I broke my self-imposed rule of remaining in ignorance - I’ve read about some pretty awful experiences of this in the breast cancer care forum. I should have kept away, kept to my decision not to delve into any of this in detail. I know that the people most likely to post are those who are scared, worried or pissed off. I wasn’t too appreciative of the person who responded to my query about loss of taste with a statement about how few side effects she’d had and she hadn’t experienced this. I still don’t know what her intention was. It certainly didn’t help. However, maybe there should be more posts from people who have had ‘positive’ experiences?

So the next three weeks remain as uncertain and unpredictable as the first three weeks were. Maybe there will be good (ok) days as well as bad (beyond awful) days; maybe they’ll follow a pattern; maybe they’ll be random like this month. I made two arrangements for Wednesday, based on my experience so far of the steroid boost. Right now, I’m wondering if I made a mistake.

I definitely prefer the Land of Denial approach but I’m finding it harder to get there, let alone stay there. Someone please wind me up! I’m sure psychological exhaustion is making the fatigue worse.

35. My day...

Day 19/21. I should feel fine. Should? I’m going by the last cycle of symptoms. But it’s all haywire and unpredictable.

First I needed to get ready to go out. There was only an inch of snow and traffic was moving steadily so nothing to worry about there. However, I couldn’t put on my mascara, my hand was shaking so much. I’m assuming it was fatigue. I decided against the wig. Just a beanie and a defiant baldy me.

Then a quick trip to the local hospital for my blood test. At St James’s, this process takes about an hour. You sit in a packed room where hardly anyone says anything (too big an elephant in the room?) and wonder if you’re going to pick up an infection - I wondered why so many prefer to stand in the corridor! At Wharfedale, I was in and done in 5 minutes. And I mean done. A simple drive to the hospital, short walk to the pay and display machine which one man was destroying single-handedly because it wouldn’t give him his debit card back; a slower walk back to the car... deep breaths: I can get there. Another walk back to the entrance and a sit down in the corridor for a breather, before reaching haematology.

After that, a visit to see a friend’s ‘new’ apartment. A short walk from the car and I think I might have looked done in because Pauline 1. Suggested we use the slope rather than the steps. 2. Used the lift for one floor (I didn’t dare say lifts terrify me and I survived intact) 3. Suggested I put my feet up on the sofa and have a lie-down. To top it all, she went to the trouble of fetching her car and driving me halfway through Otley to deliver me back to my car door, to save the walk! Well, Pauline was right. I was completely done in and appreciated every gesture.

Then I lolled around with a cup of tea, too tired to eat. I felt completely drained. I got a letter dictated by my oncologist on 15 December (good job it wasn’t urgent). It summarised my cancer, my prognosis and proposed treatment for my GP. I gave it a cursory read - nothing I didn’t know, but seeing it in writing is disheartening. The power of Land of Denial is waning.

I read the paper and did the puzzles so obviously my brain was functioning, then I completed my knitting and ate a hot meal. The texture was slime. The flavour was non-existent. What I wouldn’t give for ‘tastes of salt!’ I’d already had a digestive biscuit which felt and tasted like I imagine sawdust does. I should have expected it. However, a bright spot: I succumbed to the lure of Cadbury’s. The smell was bliss. The texture was just as I remember. The flavour a little dubious but not repellent.

Then TV. Cancer ads everywhere. I DON’T NEED THESE REMINDERS PLEASE. GIVE ME A BREAK. Everything I watched was uninteresting and I felt perilously close to tears of self pity. But I don’t do tears so I hadn’t even got that release. What I wouldn’t give for a good cry right now.

So, some activity, which is good. No energy, which is not good. No taste (it had improved last month by now). Sores on my gums, though my tongue is less sore now. Sore eyes. Soreness wherever there’s soft tissue. Basically, I’m pissed off. Perilously close to a pity party? And only 2 days before I start again. I’m looking forward to the steroid boost at least.