103. Oh well...

Email today from the Planning Officer, via Cllr Anderson, confirming that Miller Homes complete their purchase of the land around us today and intend commencing work next week. S/he expects to provide a list of people residents can contact if they have concerns; in other words, it’s nowt to do with the Planning Office so don’t bother! It’s been inevitable for so long but deadlines have passed and I’ve kind of assumed maybe they’d start next year. There’s the road to sort out and a new roundabout before the housing surely? And that was scheduled for April. It’s going to cause chaos and, as the PO said, it will last 8 years.

If things had been different, we would have moved by now. I’d whittled it down to two or three properties to consider more seriously when we kind of got distracted by all this rubbish. Now I’m close to recuperating and what will I have? EIGHT years of building, nosy construction workers, constant noise and no privacy. Plus a confused and agitated cat. I could weep. I look at that beautiful view and despair. Lisa is resigned to it and more concerned with the 5 metre boundary and whether it will be ours. All I can think of is the 23 prospective upper floor windows that will soon overlook our property, never mind the downstairs windows and a blank wall we’ll have as part of our view.

Wednesday I got my knitted knocker through the post, a bit squashed by the postman but it’s resilient. I had a little tear in my eye: ‘a gift from one woman to another.’ So many women hit by this disease for which I can find no adjective. Useless? Pointless? Destructive? Vile? Horrid? The fact is, it’s a disease like any other - they’re all as bad as each other in some way. Back to my knitted knocker. It came in a voile bag, with some spare stuffing to get it to size, a packet of love hearts and some green yarn, the purpose of which I’m not sure - either to stitch it up when I’ve go the right size (there’s too much for that) or to add a nipple if I so desire. If a green nipple makes your mind boggle, I could have ordered this knocker in sky blue pink with black dots on if I’d wanted. I chose flesh colour:

“Knitted with love and filled with hope”

It was free, knitted to size - I underestimated and probably should have got a 36 - and I only learnt about it last week. As soon as the 21 days are up, I’ll try on a proper bra and see how it feels. I know the ‘softie’ provided by the hospital felt like a lead weight but this is so much softer. In the meantime, this is day 11 and I still only have a mild itch on the slightly red patch above my scar, plus some pain in the muscle - but nothing noteworthy. I’m getting off lightly, though the itch is getting sorer each day as I try hard not to scratch.

Yesterday was beautiful and this afternoon was almost as good, though more breezy. It’s the closest we’ve got to hot weather this year and I’ve sat outside reading. Blissful. Just one problem. Well, two because the book is lousy. I have to protect myself from the sun for the next 12 months! So I ended up feeling like Lawrence of Arabia, arranging my scarf layers to ensure not an inch of radiated (?) skin was exposed and the layers of fabric were impenetrable. Add to that my ‘virgin’ scalp which hasn’t seen the sun since I sat in my pram in 1951, when doubtless I wore one of those daft bonnets babies used to wear!

This was before I swapped my jumper for a strappy vest and cotton shirt. Today I got braver: shorts, vest and shirt, sun hat and/or SPF30 on my scalp. But still the scarf, strategically placed.

Note the blue sky above the fence. Soon there will be houses there :)

102. It is no more

There isn’t, for me at least, a sadder sight than the remains of a Cadbury’s Easter Egg. Yes, I know it’s the end of June and it was probably close to its Best By date but I had my reasons. These last few days, I have derived great pleasure from eating chunks of chocolate broken off my giant egg. I use the term ‘chunks’ loosely because Cadbury’s obviously believes size is more impressive than quantity: the Giant egg is still giant but it’s considerably thinner each year. My chunks break off too easily and it’s impossible to hold the egg without a bit breaking off. But it’s academic. It’s now eaten, gone for good - and probably a good thing. Is it coincidence that I’ve spent the last 6 months without any experience of a bloated stomach (despite all my other symptoms) but I revert to the old discomfort within a day of scoffing a moderate amount of Cadbury’s milk chocolate? It’s something I’m happy to test out, since it means more chocolate-eating, and this is the right time - before my daily craving is re-established. Right now, I think it would be fairly easy to wave bye bye to my childhood love. Of course, there’s the backstop of Darkmilk which didn’t seem to have the same effect on me but I did only eat one or two squares as it’s quite rich for me.

I’m slowly improving. Energy to go about my daily life is back - I just have to get my head to catch up with my body. If Kiera hadn't texted yesterday to say when she was picking me up, I’d have forgotten completely that I was meeting her and Marilyn for cake. In fact, it was a sausage sandwich, fish finger sandwich and eggs benedict - but I brought a lemon slice home, very disappointing compared to the rich lemon cake they usually have. I do have a diary on my phone but it has a nasty habit of deleting one-off additions. You’re probably thinking I forget to press ‘save’ but I don’t. I check and it’s still there. Somewhere along the line, it disappears and I’ve no idea why.

I’m on Day 3 of a full dose of anastrozole although I’ve taken smaller doses through the week, building up acceptance of it. No sickness but I’m taking no risks: I take an anti-nausea cyclizine before it! I did have one hot flush and experienced the weirdest feeling of being stung by a swarm of benign insects (in other words, not painful, just uncomfortable), mostly down my arms and hands. Maybe the areas affected by the neuropathy felt it most. Nothing today though. It’s early days but I’m not looking for side effects. What will be will be.

I am still sulking over Dr D’s opinion and decision and I’ve left a message for T, the adjuvant oncology nurse, to ring me if she can. I plan to ask her about the symptoms without mentioning the doctor, or at least saving it till the end. However, the chances of her ringing back are low: I’m not under her immediate care any more and I’ve been replaced by too many similarly unlucky and frightened patients. Meantime, my upper lip is still swollen inside and it changes my whole appearance, as well as being a constant nuisance. It’s hard to describe but much of my upper lip is wrapped under my upper teeth. If I put my lips into their ‘normal position,’ I look like a failed Botox advertisement. By the time it shrinks back to normal, I’ll have a permanently elongated philtrum and baggy lips. When women are flocking for fillers, I’ll be asking someone to take it away! However, that’s of negligible importance to the clumsiness that is deterring me from driving. The injured rib pain is, I think, no longer a problem though it’s still there. The problem is whether my legs can be trusted on those pedals! I’m longing to drive but unwilling to take the risk till I know the exact cause and am confident I put no one at risk, myself included.

It’s Day 8 after radiotherapy finished. Days 10-14 are earmarked as the most vulnerable days but all I have is a slightly worse itch in the area above my scar. So far, so good. However, it’s really disheartening when you look on the breast cancer care forum and find people who are sailing through chemo with nary a side effect compared to what I experienced. Maybe someone feels the same about me and radiotherapy? Now I’ve started itching. Time for aloe vera.

101. Can nothing go right?

So today Dennis and I attended the breast clinic for the 1pm appointment. Of course, Dr D had forgotten to log this appointment made with the radiotherapy nurse so I wasn’t expected. Surprisingly it didn’t cause any problems, tho I imagine the patients waiting may have got a bit pissed off. I asked if Dennis could come in, so sure was I that we would leave reassured. I shan’t do that again.

Outcomes (not in any order):
1. Zolendrate. Regardless of the Leeds Hospital Trust’s leaflet saying sickness is one possible side effect, Dr D held fast to her belief that it isn’t and she hasn’t known anyone ever be sick. Ok, but may I have some kind of prep, given my phobia and what the leaflet says?  I can take a cyclizine. That works for 6 hours so should be ample. Conclusion: Dr D doesn’t understand phobias, let alone phobics. So I’ll be self medicating and hoping I’ve assessed it right. I must make sure I have a sympathetic companion!

Just to show I’m not imagining it - it’s top of the bloomin’ list!! To be fair, this is from the Breast Cancer Care charity - I can’t locate the Leeds booklets right now.











2. My throat. No need for a camera exploration which was what was being discussed by Radiotherapy. She can see enough and there’s no visible damage. However, radiotherapy will not have caused my gruff voice because it doesn’t touch the voice box (can’t for the life of me remember its proper name). So why do all the leaflets in the hospital say that radiotherapy to the collarbone can cause a sore throat? I don’t have a sore throat but I do have a gruff voice, which one would normally associate with a sore throat. Well, that’s really good news and isn’t it a good job I didn’t know what they had in mind as I would have been a wreck these last few days. Ignorance can be bliss.

3. Paclitaxel ONLY affects the peripheral nerves affecting the hands and feet. That’s it, full stop. It doesn’t affect the mouth, let alone the throat. It certainly doesn’t affect internal organs. Or areas of skin. Nor would it affect my ability to walk normally or my swallowing difficulties. This may be something separate from the effects of chemotherapy and needs to be investigated. Next step, an MRI. In a desperate attempt to avoid such horror, I asked if it could be caused by stress and anxiety, given the timing of onset - just before surgery, when my mind had wisely become reconciled to the inevitable and I’d stopped catastrophising. Some might, like the initial problem swallowing, but not all of these together. I couldn’t get out of it. But again, the leaflet provided by the Trust that employs her says clearly it can affect the mouth! Who writes these leaflets? It’s a bit like a teacher who tells pupils to research from X. Y and Z without ever reading the sources herself - bad practice?

4. Please keep a daily diary to monitor severity of the problems. Ugh, I dropped the diary months ago. It says Roll on Summer. How naive of me.

So I left with a friendly thank you and a smile, inwardly screaming no no no no no... I can’t do it. By the time we got downstairs, I wanted to cry. Of course I never do. I booked a cab, was told 10 minutes (unusual but then the cricket World Series/cup  - what do I know or care which? - is on so maybe some drivers are getting delayed. So much for reassuring Dennis! I went to sit on a wall, away from the smokers. There was just enough space next to a young woman who, very timely, picked up her things and stood up. I made a flippant comment and she sat down again. I sensed she needed to talk. Wasn’t it lovely in the sun, so long as you could pretend the wind wasn’t here? Was I visiting someone? (See? I told you it was a good wig - certainly fooled Dr D because she said “I wasn’t expecting that” when I whipped off my wig so she could test how much I could feel). I told her I was a very pissed off patient, having gone for a simple check up and ending up being told I’d need an MRI. I asked if she was a patient too. Yes, she had a weight problem, not anorexia but caused by the troubles life throws at you. So we talked about how hard it is to put on weight, how strange it is that we both have the same problem. She claimed these things were never sheer coincidence but meant to happen, so I said ‘Serendipity?’ To show I understood (but didn’t concur - it was sheer coincidence). We had such a good chat, Dennis assumed we knew each other and so kept away!

But, to the girl on the wall - THANK YOU - you broke the spell. I stopped feeling down and started feeling angry lol. Anyway, I hope she finds her solution because I know how hard it is to be very very thin and underweight and have people making unfounded judgments about you. I can imagine the hospital staff thinking “ok, we’ll play along with you but you’ve got anorexia, no matter how much you deny it.” There’s anorexia nervosa and there’s anorexia. Very different.

Back to me. Back home, I broke my rule and I googled peripheral neuropathy. Even the NHS site says it can affect your mouth! Actually, it said it can affect your intestines too. Dr D, you need to read more and learn from your patients. Then I looked up MRI on the NHS site. I reckon I can do it. It’s open both ends. And why not get everything checked out as a bonus? So right now, I’m feeling more positive thanks to the very thing I’ve protected myself from throughout this crappy period - good old Google. Just goes to show what a bout of temper can achieve ;)

But I still think DR D is wrong.

100. I KNEW it!

I was saving 100 for the celebratory entry: all finished (more or less). Certainly no more visits to St James’s till 15 July. So here’s my muted celebration:

Not the most flattering picture. Andy Warhol wearing my clothes or Jan with a false smile and gritted teeth!

This is the notorious bell. The verse says:

Ring this bell

Three times well

Its toll to clearly say

My treatment’s done

This course is run

And I am on my way!  (Very Yorkshire)

Only I’m not on my way after all. I was anticipating a few hospital-free weeks till the zolendrate IV mid-July but the nurse wasn’t happy about my gruff voice and my admission that food has started to stick in my throat sometimes. Radiotherapy or neuropathy? She checked with Dr D and she wants to see me at the breast clinic on Friday to check it out. I don’t feel it’s necessary but I can understand they want to check everything out - but that’s why I said false smile and gritted teeth. Back to the hospital in the same week! I’d rather see Dr U - he’s more amenable than Dr D and explains things in greater detail.

While waiting to see the nurse, Lisa and I browsed through the pamphlets. They must have been low on stock when Den and I looked before because there were plenty I wanted to pick up, things I could have done with months ago. Why isn’t the leaflet on chemotherapy available in the oncology treatment area?? Makes no sense, except it’s so cramped, there probably is no room. We were approached by one of the support staff and I learnt that I’ve missed out on all sorts of things. No one mentioned I was entitled to 6 free treatments at the Robert Ogden Centre (and my carer too). I knew about the cosmetics and skincare session you have to book but have felt too weak and feeble and wouldn’t want to ask anyone for a further favour of a lift. However it seems I’m still entitled so, as soon as I can drive again, I’ll maybe follow it up. A bit late now my lashes and eyebrows are regrowing but a nice big bag of freebies is not to be dismissed out of hand. I wonder if I missed all this because of the transition from the private to the public sector? I don’t recall having a pre-assessment when it would have been covered. Perhaps it was because all of us were focused on the mental health aspect and trying to get me to accept chemotherapy.

The nurse was lovely and kept reminding me of how much I’ve achieved. For once, I didnt find it patronising!

Meantime, the Easter egg barely tastes. It needs more time to mature perhaps - or I need more time to get my tastebuds back. Oh Dairy Milk, how I miss you. 

99c, The Egg has moved

Having developed a strong appreciation of Cadbury’s Darkmilk, I feel I’m being unfair on Dairy Milk so maybe I might just try some Easter Egg tomorrow to celebrate. I’ve brought it up to perch on my box of snacks (essential if I want to gain weight but not a healthy approach to eating!). It’s enticing.

I’ve just caught myself scratching my chest over my jumper - I’ve an itch, my first real side effect. That’s interesting because it’s a complete match to the location on my back of a red patch that was new today. I was warned that I might notice discomfort on my back because the rays go straight through. What about the poor bits in between?? Apparently, a shadow on the lungs - so I have to alert any radiographer to the fact that I‘ve had radiotherapy to the left chest wall - and an increased risk of angina. Hmm. Better not to know, I think.

Today we were moved to another area again but it was more or less straight in, straight out. The end of treatment session was brief - a lovely radiographer who did my induction too warning me of stuff I already know - no sunbathing, SPF50 every time I go out, sun or no sun - on exposed areas of course; keep moisturising and moisturising again, avoid restrictive clothing... but some pleasing news: the fact that I have no dry patches or burns so far would suggest I’m highly unlikely to suffer more than the mildest side effects in the next 3 weeks while the radiotherapy continues to work in the body. The inquisitive part of me is longing to know how it all works and what changes are effected but common sense prevails and I don’t ask, Ignorance is bliss, so they say.

I had a nice lunch with the tai chi group, all one of them: Maureen who came to pick me up and brought me home again. It was still an enjoyable lunch, probably better without the other Maureen right now, a staunch Boris supporter. We’d be suppressing screams, as we had to when that ridiculous referendum result came through, My eyelash strengthener has arrived

but I’m reluctant to use it after last night when my eyes went sore and my nose turned into a tap half an hour after I’d applied Simple moisturiser for the first time. One for the elbows and feet from now on! But Simple? Who reacts to Simple? Apparently we princesses with our peas. Well, it’s all academic - I can’t get it out of the box lol!

And tomorrow will be my 100th entry (sort of) to coincide with liberation from St James’s. I wonder how I shall feel? Watch this space.

99b. The new me

Two rads (as they call them on the breast cancer care forum) to go and freedom lies beyond. Shall I ring that bell? So far, I‘ve got off lightly but I must be cautious in the next few weeks. I could end up covered in blisters and burns. I guess I’m cooking from the inside. To be honest, I don’t understand how it works but I do know it’s considered the best treatment. My muscles are sore and my voice gruff. I’m also more conscious of food settling halfway down my throat, especially dryish food like biscuits, cake...all the stuff I need to regain my weight.

So this is me in the rads changing room. It never occurred to me I could take a selfie! Maybe that’s to my credit?

This is called the Uncle Fester Look. I had no idea how big my ears are. I was about to photograph the post-rad effect but the camera didn’t pick up the redness on my neck and collarbone. Then it faded. I think it would be a bit much to put up a picture of my noob. It would feel like I was a flasher! My head looks shiny bald but it isn’t. I still have that halo of white hair barely visible, with a thicker white regrowth I can feel. I need to regain about a stone minimum. If I could do 2 stone it would be miraculous. But the only time I reached 9 stone was when I was on steroids! Weight gain won’t make me look less skinny - that’s how I’ve always been I’m afraid. But when I wasn’t thinking and realised I’d removed my jeans without undoing the button or zip, that was a surprise!

This is me as I’m presented to the real world. Part of me is resentful that I need to wear a wig to blend in but it has one advantage at least. It’s almost impermeable so I’m oblivious walking in the rain :) The draping scarf is to conceal an extremely flat chest. Even a sports bra is too restricting for my ribs and it all starts to ache. For once I’m grateful for small boobs. Maybe that’s why I’m not fazed by losing a breast? I just don’t like how the imbalance makes my jumpers hang badly. Then there’s the makeup. I’ve always worn it subtly but I use more and darker eyeshadow and am improving my brow technique. I’m regaining the same spots (thanks a lot) and losing the loyal eyelashes (gone) and eyebrows fast. Thank heaven for glasses.

 Not bad considering I’ve been thru chemo

I’ve read some good booklets from breast cancer care that I wish I’d had earlier. Tonight I’m starting the Anastrozole, the one the pharmacist warned me about. I’ve used the pill cutter and have a tiny bit (maybe less than a quarter), a slightly larger bit (maybe just over a quarter) and a third. I intended cutting into quarters but pill cutters are unpredictable. I’ll take a cyclizine but, considering the size of the dose, I’d be surprised at any effects.

Talking of effects: insomnia. I went to sleep at gone 6 this morning. I can’t sleep. Yet right now I’m retyping over rubbish, finding my eyes have closed and dropping off for a moment, Nope, definitely not fit to drive yet!

99a. Nearly there

Two to go and still (TOUCH WOOD) no problems apart from difficulties caused by my accident. So here’s the waiting room:

I can’t show the rest of the area (this is just for machines 9-12) because it would impinge on other people’s privacy but it’s very spacious with comfy chairs and nobody talks to anyone else; very British lol. These are actually machine embroideries, mixed media work with collage. Rather lovely with a touch of Japanese artwork in them. Oddly, most of the chairs face away from them!

Then we go down the corridor into a changing room, strip the top off and put on a hospital gown and tootle off to the radiotherapy room. The corridor includes a few turns and you get diverted by this lovely picture, I imagine a touch of psychology here:

                                                  

Actually the corridor is light but the picture is illuminated and I didn’t have time to faff with the camera. Pretty though. Then you’re in the vast room:

Treatment Room 9 is actually used for the children’s clinic as I said before, hence the artwork to the left - not quite up to the standard of the corridor, The radiographer shot out of range, leaving her hi-tech equipment behind. Yes, they still actually use a simple ruler for their measurements lol. Here’s a close-up of the machine though:

To the right are all my precise measurements on screen and they check every one of them, to get the accurate height of the bed, the right angle etc. Good job too or I’d have lung and heart damage. As it is, I’ve been told I’ll have a higher risk of angina now. Great! The bits above the machine rotate and send the rays across and in my noob and collarbone. The oncologist told me to expect soreness on my back as the radiation goes through me!! I just dont think about it. What’s the point? The shiny blue knee rest is a boon - so comfortable that you forget about the vertebrae digging in the hard bed. The white bit is literally a sheet of paper, to keep it a bit warmer!! Like I said, hi-tech!

So that’s the radiotherapy room for you. Bet you were fascinated! I wanted it recorded for my own benefit as I feel very positive about this experience, even though I have no idea what nasty things it has done to my body. Still awaiting the effects; plenty of time yet, unfortunately.

99. You WHAT???

Well, I managed to escape the expectation and demands of an exciting birthday. Spent the day proof-reading and knitting - and complaining online about non-delivery of flowers to my friend. No presents, though a couple of cheats gave me glorious flowers and the message in Dennis’s card (one of Beryl Cook’s more lewd paintings) had me very tearful. That’s the problems with this situation. Everyone is affected. So the poor sufferer has to fight the disease, undergo the treatments and feel responsible for everyone’s emotional wellbeing? One at a time would be hard enough.

              

This is the Monet collection. Gorgeous aren’t they!

 Less gorgeous but it made me laugh.

Cause for celebration - a whole row of stubby colourless eyelashes. Yippee. Yay Yay. Woohoo. Whatever they say. Hooray, hoorah, huzzah? Real proper eyelashes. Top and bottom eyelids. Less obvious on the left than the right eye - that will look great. AND definite signs of new pubic hair - invisible so I’m guessing everything will grown back white. I had a good head of white hair but this isn’t the silver white. It’s kind of colourless. Transparent? Anything will do. I can always mask it with highlights, mascara etc.

Yesterday was clinic day so my radiotherapy appointment followed from there. Come 2.35, still no sign of any oncologist, so I checked with Reception and no, no-one had gone in. Yes, it did look like she hadn’t arrived again. I ended up going off for radiotherapy (which had its own problems but they got me through fairly speedily) and then returning and still Dr D wasn’t ready for me. I went in armed with loads of questions but she, of course, was in a bit of a hurry, more concerned with getting me onto hormone therapy than anything else. I tried asking my questions and I did get some answers (no steroid or anti-nausea preparation before a zolendrate drip, she hadn't come across a reaction like mine before but she’d make a note of it and yes, take Lorazepam if it means you won’t do a runner - my words). I forgot to ask the key question: what proportion of her patients had developed jaw problems as a result of this treatment? I can see all the benefits of zolendrate and I know I couldn’t swallow a “large pill” in water (I use banana or soggy biscuits to get my pills down) but necrosis of the jaw??? No thank you. I’ll have to find someone to ask.

Now to the bit that explains my title today. She wrote a prescription for this anastrozole and told me of the side effects - hot flushes (great), sore joints, muscle pain...exactly what a pensioner wants added to her daily life. But it’s only for 10 years. I got the prescription filled at the hospital pharmacy today and the pharmacist asked if I’d taken it before. No? “Then I need to warn you that you may be sick in the first few days. A lot of ladies are.” I think I might have looked a bit stunned cos she added that it was “only 50:50. That means you’ve a 50% chance of not being sick.” I said you do realise you’re talking to someone with emetophobia? She looked blank. Fear of vomiting. “Oh.... Well let’s hope you’re lucky.” Aaaargh. I’d already told Dr D I’d be starting with a 1/4 tablet and building up from there (she said, happily do what you like - how refreshing) but now I have to consider taking cyclizine too. I’ve been feeling queasy the last two days - without the medication - so I can’t see me starting till radiotherapy is finished.

Getting mildly sore now but otherwise no noticeable change. I might be lucky but I’m not tempting providence. As we left today, suddenly the bell rang and virtually everybody started clapping. It was a man about my age and he looked so happy I filled up with tears. I couldn't get in the lift with him. Lisa would have spoken to him and I would have burst into tears. But it doesn’t change how I feel about me ringing the bell.

I had so much to say last night but was so tired, I didn’t bother. I wrote an apologetic letter to my childhood friend and bridesmaid Sheila, which ended up as almost 4 sides about everything from September to yesterday - poor woman has to plough through it. It was typed as I just can’t do handwriting with numb fingertips. Then I wrote a piece of flash fiction (300 words) to fit the title, 1968, after the summer of love... Everyone wrote about music and festivals and hippies so I wrote about My Lai, just to be contrary. Me, contrary?  I still didn’t sleep till 3! Now, my mind’s a blank. All I know is I wanted to write entry 100 on the day radiotherapy finishes - my own version of ringing that bell. That’s a whole week ahead. It’s not going to work if I want to say how great I’m feeling on Gabapentin (I am feeling chirpy, to say the least, and my face is filling out) or if I dare to start the anastrozole and want to celebrate the absence of sickness. Sad isn't it that I can only think in terms of bloody treatments, medicines and hospitals - my whole life since September!

LATE NEWS UPDATE: I just felt some fluffy growth in the bald patch of one of my eyebrows. I’m definitely re-emerging. Just a bit of a slow process.

98. It IS the 7th today isn’t it?

I’m beginning to wonder if I’ve lost track and it’s Friday 13th! First we got to the hospital with ample time to spare even tho I was not quite ready when Lisa arrived - drying a bald head is so time-consuming! No, to be honest, I was faffing around trying to get a semblance of respectable eyebrows. Never having done anything but pluck before, I make a bit of a pig’s ear of them. Lisa is a genius at locating parking spaces (and at parking) so in we went, taking our time, sat down...then I saw in the distance “50 mins.” I went to check and it was an apology, informing us that machine 9 (mine) had broken down earlier and they were running 50 minutes late.

Big decision: do we stay put in case they’ve caught up or do we go somewhere more pleasant and hope for the best? The matter was resolved when a radiographer came out and announced in the quietest voice that they were running an hour and a half late now. I felt so sorry for her - a sea of blank, controlled faces, no one wanting to express their frustration because everyone is so grateful for the treatment we get!

Fortunately, one woman was obviously an old hand at this and asked if she could have a patient bleeper so she could go out to be with her kids. So I asked for one too and Lisa and I went up to Costa where I had a gorgeous lemon curd tartlet and a cup of tea. The woman was there with her young children but, surprisingly, I got the bleep first.

Radiotherapy was fine - I’d done a lot of breast muscle stretching and massaging which looked a bit iffy but, believe me, is just painful. The radiographer was going to write happy birthday on my noob but they were running so late I didn’t remind her.

The doctor of course rang while I was at the hospital and I’d left my phone charging at home so I got a message to contact her if there were any problems - no use when I wanted an increase in dosage. Fortunately she also tried the landline and D told her I was at the hospital so she rang back around 6 and has increased my dose. Fingers crossed.

This evening, I’ve done more proof-reading. The deadline is very short but it can’t be helped so I’m doing what I can when I can. Thank god chemo-brain is fading. But when I tried to email the documents back so she can work on them tomorrow, my email account had acquired a pop-up despite my laptop security and I couldn’t even open an email. I tried my personal account and no pop up - but it wouldn’t allow attachments.

Brainwave: I tried Chrome instead of IE and it was plain-sailing. I’m currently running a full scan but, 45 minutes later, we’re at 6%!!

Further ‘crisis’ - I sent Trina some belated birthday flowers for delivery today. She’s waited all day. I got an email saying delivery by 6.42. That precise. Then an email saying 9pm. It’s now 10.39pm and no flowers. Guess what I’ll be doing tomorrow! In the meantime, I was waiting for the flowers she had arranged for delivery today since I’m not celebrating my birthday tomorrow and said NO PRESENTS. This was a compromise. Have they come? No. She got an email this evening saying they’d be delivered tomorrow. Is it me or is all of this rather poor service??

Yes, birthday tomorrow. 68! But, as with Christmas, it’s postponed till I’ve got all this behind me. Ironically, when I made the decision at Christmas, I believed I would celebrate it alongside my birthday. How naive. Another few months at least, I think now...

97. Lose/lose...but ultimately win

First, my chauffeur, around whom almost all my appointments have been moved from early morning (when the hospital tends to be on schedule) has broken her big toe. So it’s been taxis and more taxis. That would be fine if it weren’t for the fact that it’s Eid and so most of the local firms are severely understaffed. Yesterday I had to take the only morning cab booking left - 7.30 for an 8.45 appointment. We were there by 7.55! Poor Lisa, I add hastily. I do admit my first reaction was purely selfish, catastrophising about appointments. Then I started the sympathy for what must be pretty painful.

Anyway, she reckons she’ll be fine to drive for this afternoon’s appointment and I’ve offered her my walking stick so she doesn’t have to stay in the car for ages in that bleak and extremely dull multi-storey car park. She can at least hobble to Costa with Georgia’s help, while I tootle down to the basement and hope they aren’t running too late. So, even tho I’m not using it for my arm exercises right now, the stick proves useful!

Today will be treatment 7, almost halfway. Only the slightest pinkness in places and some definite surface soreness at the lumpy end of my scar. I moisturise and moisturise some more. The real problem is that the radiotherapy is aggravating the rib pain and, when that happens, it is mild agony. It tends to occur in the evening and gets me close to tears as nothing eases it but it wears off eventually. At least it’s not there all the time. Perhaps if I sat in an upright dining chair which offers no slouching opportunities I might avoid it? I’m doing well with the new medication so I’ll ask to increase the dose PLEASE but that’s for the neuropathic pain. The normal pain - huh. The radiographer says it can’t be helped, may get worse as the treatment progresses and will continue to delay the healing (already delayed by the chemotherapy). It’s also likely to continue for several weeks after treatment, as do some of the effects of radiotherapy which I’ve yet to experience. I’m not letting my head go there.

So today Anne is coming across for a visit, with Kathryn and little Lottie, whom I haven’t met as she was born just a couple of weeks before this rubbish started and each time we’ve arranged a visit, either I’ve felt too chemo-poorly or Lottie has had a bug. I fully intend meeting this little one before she has her first birthday!!! We’re off to Bonds to get buttons for the girls’ dresses.

How it was and the new shop.
I much preferred the old shop!!

Hopefully I’ll get a day when my fingertips allow me to wield a needle and thread. Ah, I must remember to buy cotton this time!! Then I will have completed the three sisters’ dresses and one and a bit cardigans. I need to speed up the knitting but I’m a thoughtfree knitter - I just knit while doing other things. I always have. However, this pattern is a bugger. One error and, rows later when it becomes obvious, lots of unpicking. Concentrate woman!!

96. How are you today?

I think I’ve heard those words almost every bloody day I’ve visited St James’s and often have found it hard to find an answer. I’m a very polite person but I’m also a very honest person. I’m aware that others don’t want details so I get stumped. Fine? OK? Struggling a bit? Only once have I said “Pissed off” and that was justified and was accompanied by a genuine smile and an explanation (and pissed off was a mild response that day).

Today I found myself saying, somewhat quizzically, “Good, actually.” It was a surprise to me. It must be the medication because, although I had rib pain, my overall mood felt... well, good, which is something I’m not used to. So I had my zaps. As usual, I felt like a light piece of fabric lay across my neck but the radiographer says the radiotherapy can’t be the cause of my persistently gruff voice (which isn’t even sexy like some people’s). It’s not imagined though - it has happened from the start ( a vague warmth and a vague weight over my larynx) and I assumed it was a beam because its timing matches the machine’s. How odd. Anyway, I managed to get off the bed with just one radiographer supporting the weight of my head for a few seconds, enough to reduce the strain on my sternum, so that’s a definite improvement. I went to get dressed and noticed some pinkness down my neck, the first reaction to radiotherapy that I’ve spotted. Once I got home and had had a late lunch, I went to sit in the garden and read. Ouch. A stabbing pain in my chest muscle (above where my noob is). Another ouch. A longer pain across the whole side, almost following a rib route and probably parallel to my scar. Heaven knows what it would be like without the medication. Agony?

So, Day 4 of 15 and I’m feeling stabbing and burning pains below the surface. It’s almost constant now but it’s bearable and I’ve applied some aloe vera to soothe it a bit. I feel incredibly sleepy but haven’t been able to sleep (it’s too late to indulge myself now or I’ll never sleep tonight). But how do I feel today now? Good but a bit uncomfortable thanks.

I wonder what difference it would have made had I not had my accident. The car is now taxed so it’s ready to drive. Prior to radiotherapy this afternoon, I would have felt confident I could drive for a short while. Now I know I need quite a few more days.

95. Quick, before it changes

GP rang back and suggested a low dose of Gabapentin (never heard of it). It’s in the amitryptiline family but hopefully won’t adversely affect my heart like amitryptiline- but hence the low dose, to be increased by the week. After 3 tablets, plus sleeping with the bed wedge to stop me curling up, plus some binaural beats for inflammation (dubious but harmless) and I woke today feeling good. Yes, actually good. Now, have I actually said anything like that since I started the blog on Boxing Day??

It may be psychosomatic. Even so, I don’t care. The neuropathic pain isn’t there. The normal rib pain is and that’s ok. I feel more or less as I hoped I’d feel by this stage in the BC treatment (plus an injury I didn’t anticipate). All I need now is the sun to reach this far up North. I’ve got my SPF 50 ready as instructed by the hospital so I’m ready to relax on the sun lounger, soak up the soothing warmth and the vit D and feel better than good.

View from my bedroom window - best I can manage since we have those rather daft ‘leaded’ window panes. These are the despised conifers which provide a great windshield even if they prevent anything but moss growing on the lawn and there’s the grey sky, with not a break in sight. The stone area is Del’s preferred dumping spot for half-eaten rabbits which the crows finish off. Animals seem to have this unspoken understanding about zero-waste!

Another bit of delightful news for me: I bought a bar of that new Cadbury’s Darkmilk. I hate Bourneville and any plain chocolate (bad memories but it tastes revolting anyway). This lives up to the advertising: creamy, a real chocolate taste. It’s perfect for me right now. 

Anyway, the new microwave’s arrived so let’s capitalise on this reduced pain and investigate. Defrosting, reheating... that’s all I need. But this one has a grill. Maybe it will do a decent sausage.