233.....and time-consuming

Fingers crossed. Touch wood and whistle. Toss salt over my left shoulder. Run round the gas station in each direc...oh no, that was to ward off diphtheria according to Mum. Anyway, Day 5 and I'm still here. I get the occasional bone twinge or prickle somewhere on my hands or feet and my mouth is a dry as (fill in with your own simile). For me, the main problem remains the overwhelming quantity of part-tablets I need to take with food, half an hour after food. It's just too much food. Fortunately I can still taste most things though the early signs are there - Cabury's is tasting very salty. 

Yesterday I had a quick trip out (so much for shielding) and Kiera popped over to drive me to Sainsbury's to have my photo taken for my driving licence. Of course, having sent off the application weeks ago, I've thrown away the instructions but it clearly said I ddn't need to attach a photo. I was surprised at the time. And now, back it comes, insisting I must attach a photo. Next it will come back saying the photo wasn't witnessed. Again, nothing to say it shoud be. So I sat in the booth. I worked it out and set about having the perfect DL picture taken. Fortunatly Kiera handed over her spare pound coins because, although the greeter insisted it took card payments, it would only accept cash. My precious parking cash. 

I carefully and solemnly posed, then had to glance right down to hip level to check my eyes were poperly placed. That meant moving of course. Then I cracked it and temporary shot 1 was taken. Thank god it was a rehearsal. The first effect I've noticed is my mouth feeling swollen and drooping and there I was, one swollen eye on the left, one droopy mouth to the right. It says no smiling but I had to to raise my droopy mouth. I also had to raise my eyebrows to try and raise my eyelid a bit. So here I am, obviously caught the sun, lopsided. No makeup (me?? no makeup??) but I added some earrings. Next it will come back as "it should be black and white". I didn't get that option. FFS just send it to me!I

Be privileged- Jan makeup-free, home-cut hair

I almost forgot. Dear Dr U rang to see how I was getting on. I said “Fine” of course, is there anyone who doesn’t? Then I went through the difficult bits. He seemed quite happy and told my Gynaecology wasn’t concerned about the CT scan so that could be crossed off the list of potential sites. Then he told me a lot of his patients respond well in the first month, then have a hard time in the second. Thanks mate, just the encouragement I needed.

232. Answer: Bloody big

I’ve managed to keep myself in control. Phlegmatic, what will be will be, it is as it is..Yesterday was my fall apart moment. I woke at 6 feeling so nauseous with anxiety that I took a chance, gulped back a cyclizine to remover the nausea and a diazepam to remove the incipient shakes. Then I lay back and listened to Progressive Hypnosis. Damn, she’s good - though may be the medication may have helped.

We got to Bexley Wing in plenty of time so I wasn’t on my last legs by the time I got to Oncology. My 10.15 appointment actually was at 1.15. I should have trusted my phone diary but I was so convinced it was 10.15, nothing would have shifted me except a confirmatory phone call. No letter, no number... They very kindly fitted me in tho.  Height, weight, three lots of baseline bloods, blood pressure, heart rate, temperature...all done efficiently. Zero indications in the readings that this was a woman facing breaking point. Then I was handed over to K (or Jacques as his multisyllabic name tag said) and what an education that was. He reminded me of Mo Farah. However, he diverted me so much, I forgot to get upset. I got irritated (good control there Jan)

He checked my medical details and then asked me to list my medication. I got to agomelatine and

It’s Spring. 

he went blank. I explained it was a drug only psychiatrists and hospitals may prescribe but I think it was the spelling he couldn’t grasp so I said it was definitely in my notes. So he looked at my notes and asked if I was still taking the oral morphine. Eh? Oh sorry, wrong notes! Wrong woman, wrong patient, wrong drug regimen... is this man safe? He dialled several lines and only got it right once. Maybe number was not his thing, The thing is, we didn’t agree about anastrozole. He said I should take it. I said Dr U had said to stop it. Dr U’s letter was typically ambiguous so who was right? I was beginning to doubt myself but at the bottom of the few notes I took last time, in big bold print was STOP TAKING ANASTROZOLE. Dr U was off-duty so they resorted to the head honcho, Professor something, who recommended I stop it immediately. Vindicated! Hair still no thicker for a week without it, my one big hope, and it turns out capecitabine can thin your hair. At this rate I shall have a combover!!

He took me through all the basics and then came the Big Question - how big is the pill? He showed me a photo in their capecitabine diary (in D’s safe hands) and I just laughed. 150mg tablet easily manageable on an average day (with food). 500mg tablet out of the questions. I have come away with all sorts of suggestions like mixing it in yogurt or rice pudding but trust me, that ain’t gonna happen. If you have ever had the misfortune of having a mouthwash made for antibiotic, you may be close to the sheer vileness of the taste.

Still, two tablets. I can manage that can’t I. Well no, I must take 3 of the large ones and two of the small ones every time. It’s a LONG process, believe me. An ineffective pill cutter and surprising resignation that it has to be done has meant I’ve now managed TWO whole doses. It’s early days for the side effects. Nevertheless, my sea-bands are at work almost 24/7 and I have a raft of precautions at the ready. So far, all I’m aware of is a faint itching of my hands, which are of course massaged well with the St John’s Wort/comfrey/lavender massage oil I have dispensed by the medical herbalist.

So far so.... I don't want to tempt providence. 

I just wait. Take the tablets however I can, Pray I don’t lose my appetite. Pray I’m not hit badly. Above all, pray it works. 

I’ve filled my rainbow pillbox for time of day, let alone week. I’ve tried to spread them out more tho I know some need to be taken at night. Sill, I can get it down from twenty-something tablets at least. At this rate I shall need an adapted version in old age, Maybe two extra boxes for old crocks

231. How big is the tablet??

 I think I may have flummoxed my oncologist. He was kindly explaining everything they’ve discovered and what treatment plan has been agreed on and I barely showed any interest. All I wanted to know was how big is the tablet????

This is because I am going to be treated with oral chemotherapy - Boots will deliver my chemo once every 3 weeks. I have 2 weeks of tablet taking, twice a day, and one week off. Sounds good but for a few minor personal difficulties.

1. I can’t swallow even the tiniest tablet with fluid

2. There is a size limit of what tablet I can down with the help of banana

3. He doesn’t think I can swallow the tablet with food

4. But not to worry - the tablet can be turned into a suspension in water (I remember having to drink potassium like that while in hospital. It defies description).

5. I have increasing difficulties swallowing fluids. I don’t think a strawful is going to be helpful.

6. The swallowing is 80% psychological, starting a few days before my mastectomy as a bit of self-sabotage and exacerbated by the mucositis caused by chemo. Even some foods stick in my throat. It’s not magically going to go away now. Heigh ho.

So my mind was buzzing round these practicalities and I got the impression Dr U felt almost undermined that something like a phobia could outweigh the gravity of something like cancer. Sorry mate, it will win hands down every time.

Back to what I did take in before the tablet size overtook everything else. My CT scan has identified three suspicious areas - 3 small lymph nodes in my armpit (which I thought had been totally cleared but apparently there are so many lymph nodes, it’s not possible to get them all); a suspicious area in my sternum; and a suspicious area in my endometrium which now means a referral for investigation in Gynaecology. Well, all I can say is good luck there. I have had my oestrogen suppressed. I’m hoping it’s scar tissue from the D&Cs I had in the ‘80s. Hoping.

Fortunately, the bone scan clarified one of those areas. The radiologist asked if there had been any recent trauma and of course Dr U was treating me around the time of my car accident so he was able to tell them I got the best part of a steering wheel in my chest. Turns out I had a fractured sternum - yet A&E x-rayed me and said there was no damage beyond bruising. Huh! And because I had this unidentified fractured sternum, it didn’t heal properly (of course it didn’t, this is me!) so it’s likely that the CT scan was picking up scar tissue. That doesn’t mean it hasn’t welcomed a few cancer cells recently but let’s for the moment assume not.

The brilliant bit is MY BONES ARE HEALTHY and MY ORGANS ARE HEALTHY. 

Back to the less joyous information. I still have breast cancer in my eye socket and it’s growing steadily. (I posted off my driver’s licence application sharpish, before I was informed that it might impede my sight if not treated. First, it’s getting treated and second, I wouldn’t be so daft as to drive with a funny eye! But getting a proper licence back after it’s been withheld or adapted seems way too much hassle). I have skin lesions at the base of my neck and in the lower hairline. These feel like lumps, are red and mostly out of sight but they are spreading quite quickly. I can feel them. I also have them running from my mouth to the side of my chin but usually they are colourless and barely noticeable. I was a lot happier thinking they were hormone-confused acne. It’s not nice looking in the mirror and thinking ‘That’s cancer.’ Then I have some iffy lymph nodes in an area that was riddled with cancer in 2018. The endometrium will either have to be biopsied or taken on trust as IS/IS NOT cancer. 

It’s academic as I am to have Capecitabine. All the potential side effects were outlined (but how big is the tablet??) and I have a pamphlet to read about it. I really don't want to till I have to so it’s not yet been read. You may heave a huge sigh of relief that I’m not subjecting you to the horrors of the side effects. Yet. What I will say is I think Dr U was making a point very strongly- he kept saying that if x happened, then I must ring the emergency number and get myself to the hospital; if y happened, guess what... and z too. I think he’d harking back to 2019 when I delayed going in and, as Dennis insists on putting it, ‘nearly died’. That was when Dr U first took over my treatment. Happy days. No faulty thermometers this time.

But I’ve Googled and here they are - manageable in banana and, from the little I’ve read, taken with meals: Welcome, oh lifesaver!

I just hope this isn’t one dose!

230. So much for predictions

 It’s the following Thursday and just silence. That’s fine till I realise there’s an active cancer somewhere and another week has gone by. I still have my appointment on Wednesday (the one I thought was daft - sorry, secretary) but I also have an appointment with Nuclear Medicine at the same time. Ffs, they are even on the same floor in the same building - can’t they check my records so there’s no overlap? 

It’s for a bone scan, the one Marilyn and Clive took me too January 2019 when I was a wraith. The morning appointment is to have the radioactive isotope injected, the afternoon is the scan. I’m wondering if I could manage it all without asking for a lift. Hmmm. But of course, something has got to be changed - I can’t be signing away my ‘life’ to a treatment plan that needs explaining and questions asked AND be elsewhere at the same time.

I have had a huge clear out and have countless spare coat hangers as I’ve made hard and heartless decisions. One lot for the charity shop. A few cashmere and other specials put aside for a friend in case she would like them. A bundle of ‘young’ (ok, too young) tops set aside for Georgia to pick from, Then there’s my Rock Memorabilia - my Roxy Music/Bryan Ferry sweatshirts and tops, my Anxiety Girl top, the things I will keep even if I grow to size 26 because I love them. The rest are now sorted by colour in the wardrobes, apart from a boxful of I May Lose Weight Again tops and Maybe I Could Sell These For Charity tops, some of which are still tagged, I’m embarrassed to admit, and some of which are pure vintage according to the current definition (20thC etc). My life and my money all there in a jumbled mess.

                        

                vintage Coast

Vintage Mexx

I tried on EVERYTHING. I assessed each garment against bigger boobs (rather matronly), a belly, thicker arms and a bigger bum. How thin I was before anastrozole! Very little looked good, given the belly, and stripes are out as, I’m surprised to learn, clothes move with your boobs. When one remains stubbornly motionless, apart from a spiteful and surreptitious slide to the right, stripes and clingy fabrics are out. Whereas before I wore clothes to disguise prominent hipbones and invisible bum, now I must learn the tricks of the weightier woman. OK, normal woman. Then I’ll be back wearing tiny clothes after chemo!

Then disaster struck. I’ve said before that there seems to be a time-lapse between my body moving in a certain direction and my brain then allowing it to happen. Usually I’ll tread on my own foot or walk into a wall but this time I had an extraordinary experience - like time-lapse film. I walked towards the bedside table, past the charity shop pile, and aimed for the space on the bed next to the Precious Pile (a big one). I stepped forward and felt myself wobble and knew I was about to fall so I slowed it all down, put my mug of tea down safely, then turned so I could fall face down on the bed. I kind of managed that but something hurt so I thought I’d slip to the floor and lever myself up. Nope. The bedside cabinet was sticking out and if I touched it, I’d get a mug of hot tea over my back. And I had a cramp. I stayed for 5 minuted wedged between bed and beside table till I could yell for Dennis.

“What have you done?” Not “Are you ok/injured?” Like I did it on purpose. To be fair, he followed instructions to the letter but rescuing me was not easy. Even once I got my feet firmly placed, it hurt too much for him to grip my hands (thanks to the joint pain) and I had no strength to propel myself upwards. We managed but I pulled a muscle across my ribs so had to lie, stretching it and massaging it to reduce the damage. I have some lovely bruises (all hidden thank god) and I guess I’m a bit shocked. I now understand how my mum must have felt when she started having falls but she was 15 years older than I am. It’s a bit soon. However, repeated referrals to the Frailty Clinic and Neurology have led to nothing. Now I’m thinking about it, spontaneous fractures of the femur are a possible side effect of zoledronate. Thank heavens that didn’t happen. Oh I am just so fed up with not being well.

My reward:

229. Here we go again

 

My inner ostrich did a runner for a few days and I had a terrible time. I was an emotional wreck and certain I couldn’t cope with anything. I just wanted to curl in a ball and forget the world.

Wednesday I plucked up the courage to ring the oncology department and ask what time my appointment was on Friday, which was when Dr U said he wanted to see me. What followed was completely surreal. She told me she had instructions from Dr U to await further instructions before giving me an appointment on Thursday as there was no Friday clinic. Bank Holiday. Doctors and nurses and cancers are all active on a Bank Holiday but there can be no clinic without the admin staff and they have the day off. Ok, I would see him a day earlier, that was fine by me. Then she said she would ring me “tomorrow”. I pointed out that tomorrow was Thursday but she said she couldn’t give me an appointment without the instructions.

So, no appointment likely this week. When would I learn anything? No wonder I felt so bad.

She rang before 9 “tomorrow” as promised. My appointment is 10.30 on 14th April, TWO weeks away. I just thanked her. It’s not her fault. Dennis and I tried to work out what it meant. Maybe things aren’t so serious after all. We both cheered up.

Dr U rang me about 11, very apologetic but he explained that he still didn’t have the lab results or the CT scan report so there was no point coming in but he would ring me as soon as he knew anything further. He’d looked at the CT scans and couldn;t see anything remarkable, even in the areas he specifically wanted investigated and agreed that it suggested the cancer hasn’t spread to any of my organs. Not proof but a good sign. On the other hand, my blood markers gave cause for concern. They’d risen from 28 to 66 in a couple of months which suggested activity somewhere so I’d probably need to have a PET scan. In the meantime the MDT had decided I should have chemotherapy (oh joy!) and, since this has happened so closely to my initial diagnosis, they were looking at the same regime again. Well, it nearly broke me last time but I survived. He did say he would monitor it very closely because I had such a hard time before. I’m not sure that will make any difference.

Both Dennis and I felt better for that conversation. We felt we knew things are on schedule and what we are facing. Then Dr U rang again. He’d received the lab results and they were HER negative as he expected so that rules out hormone treatment BUT my specimen was now on its way to a Dorset lab to see if my cancer qualifies for a new immmunotherapy - PT-L1. Only 2 women in Leeds are on it but both are showing excellent results. This is a perk of having secondary breast cancer: doors open to research projects and treatments being trialled. With my luck, I’ll be getting a placebo. However, there’s only a small chance I can get on the trial. We’ll know by later next week (labs dont work over Bank Holidays either). So I’m guessing I’ll go in next week to sign all the paperwork and treatment will start the following week, 12 April - two days before the appointment the stupid woman gave me. Hey, this is oncology - that’s cancer - you do know every day’s delay can mean a LOT?? The breast care nurse rang and explained a few things that sounded a bit more scary so I backed off. Don’t want to know too much.

Meantime, I have someone doing the gardening and I’m still searching for a summerhouse. The ones I like sre self-assembly and there’s not a cat in hell’s chance of D opening the box without causing chaos. I’ll keep looking. BUT

Drum rolls....fanfares.... at the age of 69, I have for the first time EVER eaten an Easter Egg before Easter. My lovely friend Sheila sent me a Lindt bunny and egg but, more important, included a note encouraging me to enjoy them now. See, all I needed was permission! Oh, the egg was wonderful. First it was Lindt which I always associate with Mrs Kirkham, Sheila’s mum. Second, when you broke into it there were those irregularities that make it thicker in places. You don't get that with most eggs today. I can’t tell you what pleasure I got from it. Now I have the perennial problem of how to eat a chocolate bunny. It’s like gingerbread men - feels slightly cannibalistic, at least cruel. I think I shall have to crush it so I don't care what’s what. I have to pack in my chocolate before we’re back to Tastes Of Salt or, worse, soap. Oh noooooooooooo....