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.