164. No place for pride in this

Ok, now I am officially an Old Crock. I currently wear support socks for my ankles and heels (thank you Trina for such a thoughtful gift, among the others); support gloves (thank you Trina); and now compression support for each knee. I reckon I can do a fair impersonation of a small Michelin Man!

These are providing considerable relief from pain but doing nothing for my pride. Add to that an allergic reaction to the tops of the knee supports (red weals encircling each thigh), out of date anti-itch cream (2016) and out of date antihistamines (2019). I can safely say thank god for such painful hands because it means I can’t scratch!

I saw my GP about it all yesterday, having given up hope of a reply from the hospital and the doctor was very supportive and inspired confidence, a nice change from Dr N who simply said she had no experience of chemotherapy side effects (in other words, bugger off). He packed me off for blood tests which I had done today, without any problems. Do my veins simply rebel at St James’s? Does my body subconsciously hate the place and refuse to co-operate? Once he has those results, he’ll have a better idea of how to help me. I was so awe-struck by having a GP actually listen and suggest he understood that it didn’t register that I have to wait at least another week for any level of help with the pain (and the cracking joints now).

Wow, I’m typing merrily and my phone pings several times. Messages from Dr L - low vit D. Prescription been sent to pharmacy. More pills and with my luck, they’ll be the size of suppositories. Low B12 - need another test next week to confirm this. Low B12 can be a cause of my symptoms. Oh, if only it’s that simple. Please pease PLEASE let me have one simple thing, one thing go right...

NHS test results within 5 hours? Am I dreaming?

163. Oh dear

Love this album sleeve, spotted in one of Den’s regular emails. A couple of years ago, I’d have had everything laid out to turn it into an embroidery. Shame the band is called Custard Flux! Am I getting old? Well yes, apparently so (see below).

On Friday, I ventured (by car of course) to the parade of shops up Breary Lane, my sole intention being to pick up some prescriptions. The first depressing thing was that I could barely get the two bags into my copious boho handbag - my bottom drawer has overflown with drugs now. The next depressing thing was my conversation with the pharmacist, which I’ll save for later. Talk about chasing wild geese! The next depressing thing was that someone way older than me offered to leap ahead of me to open the shop door (I was only carrying a handbag!). I usually hold doors open for people.

Then I braced myself against the rain and headed four shops down to Lily’s, to admire her potted containers and select some very overpriced but incredibly delightful old roses. I got diverted by ranunculus and anemones outside. It’s unusual to see ranunculus anywhere, let alone packed in classy brown paper outside a florist’s. However, the buds were an unusual shade of mud so I moved my attention to the purple and white anemones. Interesting because, had I known they’d open to this colour, I’d have bought them in a shot. Armed with a small container and a bunch of anemones, I headed for the door.

“Let me do that,” and a sprightly younger woman hared for the door to open it for me. Bramhope isn't noted for its courtesy (usually we’re effing and blinding as we fight for the only parking space) so I was surprised but I thanked her. I plonked the purchases on the counter, had a friendly chat with the florist, declined the offer of a bag and hauled my trusty M&S carrier from the depths of my handbag; then I forgot to pay for the stuff! Maybe that sealed the perception of me as Old Lady? When I turned to leave, the florist shot round the counter and had the door open for me. Maybe that sleek black parka that looked so cool on the Jigsaw model doesn’t suit me. Maybe it concealed the skinny jeans tucked into stylish (but comfortable) boots. Maybe it was the slight hint of a black eye (I got attacked by my kindle when I fell asleep reading the other night). Maybe my body was hunched with the aches and exhaustion I was feeling from these simple exertions. By the time I got to the car, my ego was deflated. I am officially Old.

Of course I returned to a battle for my parking space.

One indecisive woman stopped right behind me. She realised the stupidity of that so moved on a bit. I don’t know if she realised the stupidity of that because, for me to move off, somehow I had to get past her but, by this time, another car had halted, waiting for me to reverse and this one had a queue behind her. Nobody hooted but I can imagine the language. I imagine the first woman was spitting nails because she roared off, only to pull into the access road I needed to turn round in. Oh, we were on a roll. So now it was my turn to pull over and cause tailbacks. Instead I drove up on the kerb, doing unknown damage to my suspension, and just waited for everyone to sort themselves out. Such excitement in Bramhope. There are so many SUVs that parking for 8 is down to parking for 5

and it was Friday afternoon, time for the weekly manicure or cut-and-blow-dry, ready for a night out. There are four units taken up with rival hairdressers and beauticians. Plus a pharmacy and a florist. No wonder it’s busy.

Btw, those of you who know me know I’d never have given these cartoons the time of day, except to whip off a letter of complaint - but there’s something about women drivers in Bramhope that’s making me particularly sexist. Young women in SUVs so big they have to look under the wheel. Aaarrgh!

Back to the pharmacist. I’d decided to ask her to do some research for me into anastrozole. It doesn’t make sense that, after two weeks without it, my side effects are actually getting worse. She agreed with me (we don’t agree abut different brands, despite the nurses saying they have many patients who’ve benefitted from a change of brand) but she agreed the symptoms shouldn’t be getting worse She calculated it would need 7 days to clear the anastrozole half-life from my system. Her conclusion was that something else must be causing the pain. It turned out she worked in oncology for several years so we went through what chemo I’d had (Dr D would have been having kittens at the idea that her precious chemo could cause this so many months down the line but the pharmacist claimed it wasn't unusual) so we went through the E, the C and the paclitaxel and she found nothing in her pharmaceutical bible. Then I had a revelation.

“What about Zometa?” She looked blank. Zoledronate, zoledronic acid. She was on firmer ground. While she searched, I thought back. My symptoms started just over three months after I started anastrozole. I changed brand. Ergo the change of brand caused the effects. I completely overlooked the fact that I’d just had my second zolendronate treatment in July. Then the symptoms have got markedly worse in the past 3-4 weeks. Five weeks ago, I had my third treatment. Yes, the pharmacist announced: zoledronic acid does cause bone and joint pain (I really feel like I have pretty bad arthritis now and my fingers need constant movement or I get painful trigger fingers and have no grip).

So now I have a dilemma. I don’t see Dr D till June, just before my 4th treatment. My GP doesn't want to know about chemo effects - that’s the hospital’s business. See a different GP? Make my GP take responsibility for treating me, cos the hospital sure as hell won’t. There’s state-of-the-art provision for everything except side effects, as far as I can tell. Do I ride it out? I should be doing weight-bearing exercise to strengthen my bones, not curling up in a ball of misery and then regretting it because it takes me 10 minutes to uncurl!

162. Stream of consciousness

Ok, here goes. I’ve not written anything for a week which is disappointing but also good. Good because it suggests there’s been nothing to write about. That must mean things are on the up.

It doesn’t feel like it. However, they can be a bit comical, to me at least.

I’ve been off the anastrozole for 8 days and, if anything, the joint and muscle pain is worse than ever.  I wonder how long it takes to get this evil drug out of my system? Meantime, my hands now get locked if they aren’t moved for any length of time (in tai chi today, I had to stop and straighten my little fingers manually because they wouldn't do it on their own accord). If I grasp something, my hands cramp. Not so amusing.

                   

I walk like John Wayne after a hard day’s riding. I limp because my heels are on fire (I’m told that’s the plantar fasciitis for which I can do exercises rolling my feet back and forth on spiky balls - great, except I have neuropathic pain the medication can’t reach so spiky balls feel like instruments of torture. The alternative is a bottle of frozen water - great, except the pain of the cold is as bad as the pain I’m trying to get rid of). If it’s not my heels holding me back

I can find an excuse for avoiding anything that is meant to do me good.


I am regaining tiny bits of my body. I stopped sweating with chemotherapy and didn't restart. Who’d have thought a woman would want to celebrate the fact that she can smelly-sweat again? Back to the anti-perspirant after all these months.

My chemo curls have gone.

I weigh over 9 stone now. I bought some size 10 skinny jeans since I was squeezing into my size 8 jeans. I can’t wear skinny, that’s for sure. They've been sent back, with a request for the straight-legged version.

I found a great little bra in Asda. It looked perfect and had a pocket inside the pre-formed cup, indicating it had been designed for what they now call Post Surgery Bras. I popped in my prosthesis and my heart sank, along with the prosthesis. My own boob fitted perfectly but I’ve gained 24lb since I was fitted. My prosthesis sank to the bottom of the cup, leaving a hollow that stretched in the oddest ways. Too late to take it back but at the grand price of £7, I can let it go. Obviously I need a new prosthesis.

              

Maybe I should have a balloon I can inflate and deflate as the need arises. Alternatively I could resort to the tricks of early adolescence and stuff the space with cotton wool or kapok. I’m not sure I want to. I am a small-breasted woman. I don’t want to look like Miss R, my history teacher, who had what I would describe as a platform chest. She couldn't fold her arms. I remember finding that hilarious, horrid child that I was. Child? I was 16!




My face still droops. Dennis notices it sometimes before I can feel it. I think a full upper lip is meant to sound attractive. I had one. This full upper lip is inside and it draws my lip inwards - feels horrible.

The house continues to present challenges. Right now it’s a leaking downstairs toilet. Fortunately, this is a toilet that we know is never used so it’s not so bad but no one can come till Wednesday (has to be a Saniflo expert). Now we know someone is coming Wednesday, water is flowing out from wherever. I know how to disconnect a toilet from the water supply but can’t access the necessary screw to do that. We’ll be squeezing out towels every half hour now.

However, Storm Dennis proved a damp squib here. No flooding. Thank you Mr Gallagher for digging all those little trenches.

161. A first time for everything

Today I posted a photograph of my noob online via a personal message to a very very anxious woman on the BreastCancerNow website. The comedy of it only struck me afterwards - would Facebook take it down for breaching their rules of decency?? It was once a breast; it’s located where breasts go... but basically it’s just a slash across the chest, ending in a confusion of lumps and bits of flesh and numbness under the arm.

Now I’m wondering why I don’t post it here. The answer is, it feels like flashing! I frankly don't give a toss who sees it in the gym changing room or at the hospital (hell, I have D the physio massaging it and anchoring it down to see if I can raise a straight arm without scar pain!) but it feels unseemly so you’ll be relieved that, for now at least, I spare you the experience.

3 nights without anastrozole and the only effect is a lot of hot flushes, not quite what I hoped for, especially since I just received the cosiest throw you ever could wish for - thank you Sheila.

            

I know it’s early days but I spent over an hour this morning unlocking each finger and then desperately massaging one leg cramp after another, cramps in places I’ve never had cramps - because this is a Side Effect, not a normal cramp. Oh no, nothing normal allowed on my body. Only the strangest Side Effects. I am so looking forward to losing this awful bone pain. I wish I hadn’t been so smug in the first months. ‘Side effects? No, a quick flush an hour after taking the tablet and that’s the worst.’ I spoke too soon.
That’s my knitting btw - it’s actually blue!



It’s been an exciting weekend of Storm Ciara meets Miller Homes, with poor Woodview in the middle. Saturday night the wind picked up but I was unaware of the rain. There must have been a LOT because, by the time I was aware of things, it was falling in sheets, almost horizontal at times and... out went the lights. It was only 11am so why worry - but we had no phone, no WiFi (eeek) and it wouldn’t be long before the house got very cold. Dennis managed to get the upstairs sorted but we couldn’t get downstairs fixed.

Babbling brook running round lawn

Running stream down garden

When we went outside, the garage was flooded worse than before; the patio was under 6 inches of muddy water, the garden was a quagmire (lovely word); the front drain was blocked with mud (hence our little flood and power cuts) and the building site was utter mayhem. The channel they’d cut was overflowing, we had ponds right up to our fences and a new stream coursing down the field from the posh area where they haven’t even started work - so in all fairness, I can’t blame the builders.

Yes I can. I loathe them with a vengeance. They are greedy and they cheat. They bend the rules and get away with stuff just because it’s too much hassle to challenge, let alone stop them.

Enough of the rant. The flooding was mild in the grand scheme of things but we would never have been affected by it had it not been for the mess on the building site. If water hits a mountain of earth, it goes round it - and heads for Woodview. Anyway, the contractor rang me in the afternoon, by which time I had every essential working by plugging in extension leads upstairs, and today I was visited by his site manager (a bit defensive) and the new Miller Homes Senior Site Manager (according to his card). I used my best teacher-voice to point out that the first time was understandable, this was downright annoying and yes, I understood it was freak conditions but that didn't change the fact that we are in the middle of their flooding and they should have taken better precautions. I expected to be properly protected from even freak conditions and, if it happens again... yes, I actually tailed off because what can I do? Solicitor? For what?

On the good side, I showed them the map and asked them to measure the distance from our boundary to the new house (currently a huge paddling pool). Craig suggested I was looking at an old plan so I put him right on that. Oh, I was on a roll. I also asked Tony to find out what’s happening to the buffer as ‘there is local concern and all sorts of gossip.’ I hope he realises he is going to be the most unpopular man in Bramhope! Everyone will fall on him with their complaints - but at last we can put a face to Miller Homes. Poor bloke, I wouldn’t be in his work boots for the world.

I am shattered from a full tai chi class. No sitting out and only one bit of shirking, a stretch I daren’t even try because I will fall over. Quite proud of myself. Tomorrow I have my free pilates one-to-one session, my Christmas Raffle prize. Pilates is recommended for all this joint and muscle pain but it does beg the question - how do you manage the slightest twist when everything hurts! This will be fun and useful, I have decided. What I haven’t decided as it’s only just occurred to me - do I wear my boob or noob? Hmmm.

And here is my second favourite cat, Lady G, in her finest Jan-crocheted blanket (not intended as a cat bed!):

160. Woohoo, yaaay, trumpets, krumhorns, bagpipes, whatever...

Time at last to celebrate. Dr D saw me for all of 5 minutes (the phlebotomist took longer than that) and was only 50 minutes late. MRI clear of everything. No sign of cancer anywhere. A thingummybob by my spine which I may have had since birth so let’s not worry about it (something like a blister/lump of congealed blood???). I still have to be referred to Neurology because of the chemo side effects but no more oncology visits till JUNE. I am FREEEEEEEEE.

Even better, I can stop taking the dreaded anastrozole till the joint and muscle pain goes (4+ weeks) and then restart with the brand I got from the hospital. This from Dr D who last time insisted changing brands would make no sense. If that doesn’t work, then we can consider a different form of HT. Interestingly, Den and I had bumped into T, the senior oncology nurse, and she said brand made a huge difference to some of her patients and to keep her updated. Nurses are so different from specialists!

Yet again, I failed the Vampire Test.

           

 The poor phlebotomist was taking it personally that she could get a needle in but no blood would come out. Eeeek. She explained that it’s a hardening of the veins from overuse - no danger to my blood flow, just harder for them. And, since one arm is out of commission permanently, they have limited options. So having gone through three needles in my inner elbow, she resorted to my hand and got her required samples. I just got a nice lump and bruise.




Dennis and I decided to celebrate by going out for lunch. You’d think a nice posh restaurant would come to mind. Eventually we whittled it down to fish and chips at the Fox & Hounds or a sandwich at Cookridge Hall. Oh we really know how to push out the boat. I decided on the pub, headed for the post office and then drove straight up the drive to Cookridge Hall (I also left what I’d bought in the post office on the counter - don’t anyone ever challenge the concept of chemo brain!).

Celebration? An egg/mayo sandwich and chips and a bacon and mushroom sandwich. In fairness, Den did have a Peroni but I toasted with a mug of tea!

Only 2 pills tonight. It’s looking good. I used to have 8 or more at one stage.

159. Confused and coldy

I’ve got from 13 October 2018 to today feeling absolutely fine about my noob. I call it my lifesaver and don’t miss it at all. I may curse it a little (?) when my fortress bras hurt so much or I get the phantom nipple twinge but I look at my scar and don’t feel bereft or mutilated or less of a woman, all of which I hear other women talking about. Yesterday, exercising my arm in the empty sauna, I was lying back actually massaging my breast muscle. What it would have looked like had someone walked in, perish the thought. I know it felt perfectly normal but potentially a little lewd. So why tonight, when I felt a painful itch through my breast, did I automatically reach and scratch something not there, that’s not been there for 16 months, and suddenly feel my hand moving through space. There was this space where my body should be and I felt in a flash all those things I could have felt before, all encapsulated in a huge pang of loss. Oh well, as Scarlett said, “Tomorrow is another day,”

How I know that when I giggled through most of that film and Dennis and I were virtually asked to leave the cinema (it was in Guildford, maybe they were more romantic there), I don’t know. I couldn’t tell you the story. One of my cinematic failures, along with the Wizard of Oz (never got it) and It’s A Wonderful Life (never seen it).  Maybe I’d better not do a cinematic bio on here :)

I repeated my visit to Cookridge Hall yesterday, skipping the swimming and just enjoying sauna, steam and spa pool. Thirty minutes of freedom from pain. Bliss. Last week I got a sore throat the following day - that lasted 3 days - and tonight I’ve started that unstoppable sneezing.

Hopefully it will be vit C to the rescue again but honestly, is it worth it for 30 minutes? Then today, tai chi. Twice Colin commented on my performance (or lack of) and certainly I struggled with the muscle and joint pain. But they say exercise/walk your way through it. How, when you can barely step onto your foot?? Am I a complete wuss? I suspect the answer is a qualified yes. Am I a lazy git? No doubts about that one. I may change my opinion if I keep to my decision to go for a bit of a walk tomorrow. Maybe a Fitbit would shame me into action (PLEASE don’t buy me one, Trina - I mean it!) but I doubt it would do more than make me feel a bit guilty.

On a brighter note, two lovely emails. One last week from my school-friend Lesley - which inspired my music bio (that was for you, Lesley) and one last night from my childhood friend Sheila - inspired by my music bio. Thank you both for making me smile so much and yes, Sheila, I’d happily add both tracks. ‘Track of my Tears’ brings back memories of my first real passion, Patrick, railway stations as I travelled to Herne Bay each weekend and platform farewells worthy of Brief Encounter (I never did get back to France - Dennis came along). As for ‘What became of the Broken-hearted?’ I don’t know how I overlooked it. It really was my introduction to soul music. I heard it first round at Susan Smith’s house when her brother Stuart played it for me.  Funny how I can remember some things so vividly and yet have complete blanks about others.