253. Thwarted by Barbie

Bear in mind that, sadly (actually bloody tragically) we couldn’t have kids so I’m not au fait with children’s toys. My friend asked me to set up this Barbie sewing machine for her granddaughter Anya. It is the work of Satan. 

I started making my own clothes from about 14. I made suits, trousers, you name it, I could make it. I’d been an abject failure in the one term of Needlework we had at school - I was too busy chatting. So yes, I took home incomplete pyjamas with one sleeve set in upside down so you’d have to sleep with your arm over your head! I got better though, much to my mum’s delight, and she kept me supplied with sewing machines as she upgraded. Boy, did she upgrade! So I was pretty confident it would be a 5 minute job as I can thread up any machine.

After an hour, breaking out in a sweat and cursing and generally turning the air blue, I decided YouTube must have a video. After all, there’s a video for everything. I reckon if you looked hard enough, there’s be one on how to mop your brow. I found one - a child and Mummy who was going to show me how to set up the machine. Yay. It was identical. I tolerated the build up, I knew what was what, though I didn’t know the grid decorating the front was there to stick the Barbie logo on and spell out my name. Then she started to thread up the machine. She managed the top thread, only one error but at least it worked. Then came threading the needle. I have to say I don’t remember ever seeing a sewing needle with as tiny a hole as this. Even the needle-threader provided wouldn’t go through - so the video skipped the next bit (the very bit I needed to see - how on earth to thread up the bobbin when the bobbin holder was set into the machine). I ask you! What a cowardly Mummy, leaving me no better off after over two hours.

I’ve had another look today. I did manage to get the lower thread caught up ready to sew but I have no idea how - I couldn't do it again. But it’s academic - the front lever is loose and keeps sticking. There is no way I can repair that so I’m afraid whoever bought this “as new” was diddled and Anya is not going to get her sewing machine lessons. Her mummy would never ever be able to thread the machine and it’s not a job a child can do, though they could sew in lines to make Barbie’s satin skirt and top so she can sashay down the catwalk. Yes, they even supply a catwalk though you need a bit of imagination and a label in the useless handbook to know what it actually is.

Anyway, I got my CT scan results - “perfectly clear”. So I have: 

1 x MRI showing tumour but no progression

1 x CT scan showing no identifiable cancer elsewhere in my body (trunk)

Blood and tumour markers down to 5 and 16, the lowest ever

Versus

A slightly more swollen eyelid

2 new skin mets

Some existing skin mets still hardening.

We reckon the capecitabine is still containing it but Dr U said “the cancer is fighting back”. So it’s just a case of how much longer cape will keep on top of it all. After that, I’m scheduled for Trodelvy if NICE changes it’s proposed decision on June 9th. That would be a great birthday present, only a day late. I don’t want to start it, just know it’s there for when I need it later. Incidentally, the Breast Cancer Now open letter has got 110,000+ signatures now. 

Brilliant, considering their initial target was 50,000. PLEASE let NICE listen! So…watch this space. I may have a whole wardrobe of Barbie clothes completed soon!

252. The gift that keeps on giving

At long last, a visit to the dentist for a check-up, my first since lockdown. In justification, I had a cursory check 15 months ago when I lost a bit of tooth and, of course, I was shielding so things like the dentist got shelved - and then I had more important things to think about once I was on chemo again. Plus, the dental surgery burnt down one weekend so they’ve struggled to make appointments till they could place dentists in other practices for now. 

So my lovely and sensitive dentist did a thorough check and followed up two things I mentioned to her. First was a tiny nerve pain I get in one front tooth, when I can feel a tingle along the nerve up to my eye. Yes, it came on after I had my biopsy operation that left my eyelid numb. She did an x-ray and has concluded that the nerve has been severed (what a surprise) and my front tooth will eventually die so I will need root canal work at some time. I’m embarrassed to confess I cracked a joke that the tooth might last longer than me. Why can’t I take it more seriously?? It’s not denial because I accept all the facts. It’s a very awkward defence mechanism, maybe.

At the end of the appointment, I asked her about my face, the one that flops or sags at the end of the day, that Dr U says is down to tiredness. I showed her a photo of my face at its worst/best and she immediately went to the computer and brought up similar photographs. She says I need an appointment with Neurology (you won’t remember, but Dr U made a referral to them in 2020 because of my balance problems, there was no response and then along came Covid so that came to nothing) as she suspects I may have Bell’s palsy. I shan’t bother with that. WHAT NEXT???

Anyway, I drove past Dennis’ and my first love-nest - his rathole of a flat he shared with Kevin and a lad called Jim. When you see what facilities students have now, when they take their microwaves and TVs so it’s just like home, it’s hard to believe the absolute squalor we students tolerated in the early 70s! And I didn't think twice about it as I leapt into bed wearing long socks, a brushed nylon nightie worn inside out, a thick cardigan and a woolly hat. There was one bar on the electric fire shared between the three bedrooms and no one thought to buy an extra fire! Did I call it a love-nest???

        

It’s definitely a lot smarter though the road is lined with parked cars so you have to keep reversing or end up nose to nose with something coming from the opposite direction. It made me smile though and ignore the fact that I was virtually lost because all the connecting side roads have been bollarded and I couldn’t get through to the road I needed!

Last week’s CT scan at the LGI was really quick but no results till Friday week. Dr U would have rung by now if anything was wrong. The male nurse who cannulated me went straight into a vein in my hand that I didn’t even know existed. It hurt but it worked first time - and no bruising….till Sunday when I watched a lump grow and turn purple. Anyway, once I have the results I will be able to declare my Stage 4 status - so far, so good, bumps, bruises and whatever :) 

251. Better news

 I’m not going to fanfare yet as I have a CT scan coming up on Thursday and who knows what little gems they may discover. Sad to say the ‘lost’ left kidney must have gone into a sulk as I am now in the agonising process of trying to pass a kidney stone. Dr U could just about detect it on my last CT scan - why didn’t they mention it?? I could have had preventative treatment rather than risk giving birth!! Unlike pebbles, they seem to have very sharp edges so it’s no fun!

Ouch ouch aaaarrrgggh!

Friday clinic was more calm and sane than last time and the news was good. My MRI shows NO CHANGE and, although I do have a new skin met, my bloods are all good this time so Dr U believes there is “nothing significant” happening. We did talk about Trodelvy - he believes NICE and Gilead will compromise in the face of such vocal opposition (heartfelt thanks if you signed Breast Cancer Now’s open letter - 94,000+ signatures now and they need 100,000). He says we should cross that Trodelvy bridge when we come to it so I have more peace of mind now. Who’d have thought that I would actually believe what I’m told on trust lol!

https://action.breastcancernow.org/trodelvy-sign-our-open-letter?refsid=324761&utm_source=fb_share&utm_campaign=%5B93%5D&utm_medium=share&fbclid=IwAR3PU6ixp_XnGrL_f8DJiql0yDklDbD2PnO8mrjX175eijop8xAum5vBBPA

Boots don’t deliver on Bank Holidays so I wouldn’t get my chemo meds till Tuesday, which is too late. So we had to sit and wait. And wait. And wait. After two whole hours of waiting, I went to ask what the problem was - no blood results. So off we traipsed to track down the ‘fast-tracked’ blood samples (achieved second time with minimal bruising this time). The delay was in the lab. Sainsbury’s was delivering at 1pm, which seemed a safe enough margin for a 9.30 appointment, so eventually we had to just leave it. When we got home, I found two 9-tablet doses (from times when I just couldn’t face them) so I rang to arrange Tuesday delivery, rather than driving all the way back in rush-hour to collect them. Can you believe I was told they could add them to an afternoon delivery in this area!! They arrived at 4.30. A wasted morning when I’d planned to stop off for a late breakfast somewhere.

Meantime, I’ve had a couple of days of glorious sunshine to sit and read in the garden. I’m reading Tiny Songbirds Far Away for book group - about the harsh realities of life in Nigeria last century - which is quite interesting but not engaging and, on the kindle, The Dictionary of Lost Words, which had me hooked by the end of the first page. I’ve a long way to go - it may yet lose its appeal.

Enjoy your Bank Holiday, everyone, rain, shine or kidney stone xx