217. Q, Queue, Queuing...

Is it weird of me to feel excited? I had the Astra Zeneca jab today and I expected to burst into tears - every damn’ thing I read about vaccination in the paper chokes me up so I thought I might. As it happened, it was all so thoroughly organised, almost literally step by step, that there was no time but for listening to what the nurse said and saying thank you.

When I got the call yesterday, I just felt utterly thrilled - I hadn’t been forgotten! I mentioned Dennis but the receptionist said she had to follow the lists she had and CEVs had priority over 70-75 year olds apparently. Five minutes later, a different person asked for D and so I was 11am and he was 11.02am. We both had expectations after the flu jab - an empty car park, speak to a marshall and straight in. No chance. The queue was possibly a third of a mile (a LONG distance for me), obviously because of the social distancing. I wonder if you’d get the same blind obedience in any other country? Once we were allowed inside, we had to move onto crosses taped to the carpet and everyone did.

It’s not even making it safer for me to go to the hospital on Monday - three weeks before immunity kicks in and no idea when the follow-up will be - 3-12 weeks, which feels like a long wait but it’s nothing compared to the actual pandemic. I think that’s why my emotions are all over the place. It’s not so much that I’ll have greater freedom at long long last. It’s more the cumulative effect for the country. Maybe life can get back to something like normality and we can socialise freely without fear of putting others at risk or others putting us at risk unwittingly.

When we got home, the lock broke so we had to sit in the car for 25 minutes, waiting for a locksmith who changed the Yale. He wore no mask, had no protective gear and of course went into the house and we, daft idiots, stayed shivering in the garage. Suddenly it struck us simultaneously - we could be indoors. But the locksmith didn’t make much of an effort to give us space so, even though I felt embarrassed and maybe ashamed, I got out the Dettol wipes and cleaned down the door and handles and everything he touched. I am so glad he’d gone. I kept on my mask and left the door open for a while. Was that excessive? I don’t know. He’s he first person to have been in our house in almost a YEAR!! But we didn’t know where he’d been and he didn’t inspire confidence that he was meticulously observing the advice!

So I have a slightly sore upper arm and I’m fatigued (but that’s not new). Next is the Ocularplastic appointment Monday 9.20. I have no idea what will happen there but, if it involves going in for a procedure, I’ll wait till vaccination #2.

Apologies for the uninspiring photos but remember, I haven’t seen so many people for almost a year!!

216. Tap, tap tapping

Let me start by explaining that Blogspot can occasionally have a mind of its own. I have tried repeatedly but when it’s lost its left-align, it seems gone for good and I’ve given up now. Just bear with the weird layout?

EFT (Emotional Freedom Technique) seems to be the highlight of my week currently. What an exciting life. Today is Dennis’s birthday (I think he’s 73 but don’t like to ask for fear of offending him). His birthday card arrived early (within 12 hours of ordering it) so bang went that surprise as he opened it Saturday. He didn’t want a present, as usual, but I did hear him say to a friend yesterday that his ambition was to own a 6B pencil so I got straight to art supplies in Amazon and, Prime willing, he should soon own not only a 6B but everything up to a 12B and down to the bog standard HB. Quite what he will do with them remains to be seen as he hasn’t sketched for decades. I’m hazarding a guess at more LISTS.

I have my blood test appointment this Thursday - a simple process of their ringing me. So much easier. Still no word of a vaccine, though our 71yo friend had his on Saturday. Then, on Monday, I have the Oculaplastics appointment. I have no idea what it involves so I’m not worrying about it but, the closer it gets, the more I wonder of I should get a lift rather than drive myself. I can’t see them doing any treatment there and then, welcome though anything would be as my eye is half-closed now and it’s affecting my vision.

What I have done is something very positive and joined the Moving Forward course run by Maggie’s. Obviously it’s via Zoom and there are six of us at various stages of recovery, plus the facilitator. Week 1 was the basics - ground rules, asking us how we feel etc. It was fine except for the facilitator, who uses up-speak. It drives me potty. As soon as I notice it, I’m a lost cause - I notice every lift, I flinch at every raised tone, knowing it’s not a question. I know it’s my age but HOW has this awful way of speaking gripped the nation?

Week 2 I knew was going to be a challenge as it was about physical activity. Sort of. Actually, we spent the first 20 minutes talking about Journalling (what a word!) and I gradually realised that this graceful hand gently making sweeping movements across the screen was one of the participants trying to shift an affectionate cat eager to show his bum on Zoom. So I had to contend with up-speak and jealousy because the cat reminded me that affectionate Bonnie is no more and I’m left with Del, who runs as soon as I enter a room he’s in.  I need a lap cat!!!!

No chance

Back to physical activity. The pilates instructor (with a bloody cat sitting on her mat!) running that session made a great case for pilates and I can see how it will (notice the positive?) help improve my declining posture (see picture below) BUT we were expected to get down on the floor. Fine. I can slide down to the floor, no problems. Then what? I don’t have the weight-bearing strength in my wrists, knees, hands or feet. You try getting up without using any of those.

So she agreed to start with some standing pilates. At that point I didn’t dare

mention that every bone in my foot hurts, that I can step on my feet if I hold them at certain angles but no way can I spread my feet. I valiantly stood, one knee against the sofa in case I toppled, shifted from foot to foot and tried my best. 25 minutes and I was done in - and this was just the warm up. Fortunately I had to leave early for another Zoom call so I’m sure they had great fun finishing with some proper pilates, maybe one or more squashing their cats in the process.

This week we have nutrition. I have already decided to control my snorts of derision, to stay silent when they discuss foods I don't like or which don’t like me and not brag about how the last time I actually cooked a meal was October! Basically, there’s no point in my being there but that’s me being closed-minded. If they tell me eating Brazil nuts will cure my chemo-damage, I’ll buy Brazil nuts. I can’t guarantee I’ll eat them (ugh), let alone be able to swallow them or digest them but I am approaching this session with AN OPEN MIND.  Well, my version...

And I still haven’t mentioned the EFT!

215. Why do they never learn?

I was being incredibly selfish in my head, though I was very relaxed and accommodating physically, thanks to my out-of-date lorazepam. Dr G had confirmed on Friday that I was scheduled for the zoledronic acid/Zometa infusion on Monday and, since I’d had a blood test within the last month (that was pushing it but I wasn't going to argue), I could just go ahead with the treatment. That meant it would suit Emma perfectly. By the time she found a parking space, I’d be nearly finished.

If only. 

The Bexley Wing seems to operate as smoothly as if there were no COVID. Obviously, many appointments are by phone and everyone is wearing masks but they seem to be confident on the wards and the nurses generally only wear face masks. They have always been absolutely rigorous about wiping the chairs down and disinfecting anything that is motionless for 2 seconds because of the risk of infection to anyone undergoing treatment. No complaints there.

When I arrived, it was a quiet phase and I was seated pretty quickly and cannulated easily (compared to the fiasco of finding a vein the week before). Then they broke the news: they were “just waiting for my files”. Again? I said Dr G had confirmed the treatment for noon on Monday - yes, but he hadn’t sent my file over and, without that, there was no prescription so they had to wait. And wait. It was over 90 minutes before I could start the treatment. 

These breakdowns between departments happen so frequently. What’s the problem? I thought files were electronic. Considering it’s the Regional Centre of Excellence, that’s one Brownie point lost in the patient survey, which makes me feel mean. But two hours for a 20-30 minute treatment is disappointing when my poor chauffeur was freezing in her car (she denies it but...)

On the plus side, I got some extra saline - any fluid is good for me as I don't drink enough. Then I had the treatment and Emma drove me home. I felt fine, maybe a bit dopey from the lorazepam, and the next day I was fine doing the online EFT. By the afternoon, I was flat out with fatigue, as always happens, so I didn’t worry. Then on Wednesday, exactly 48 hours after completing the treatment, I was hit by the ‘flu-like symptoms’ we’re warned about. I thought I had fatigue instead but not so lucky this time. I felt awful and couldn’t even knit or read (sure signs of illness). Of course, that set Dennis off again. I am going to have to learn to dissemble with him, if not lie, because it’s not good for him.

Today, it’s back to the fatigue. Tomorrow I’ll be fine - touch wood.

So, that’s me done for a bit. I have a telephone check in 5 weeks time but otherwise it’s another 6 months till the next (penultimate) treatment. I do have the mess of the eye to sort out but I think I can manage that. And of course, I’m promised my covid vaccine by 15 February. I’m not holding my breath. Meantime I can’t get the blood test the doctor wants because I’m told to to go to the hospital (not advisable, according to the GP, fine with a receptionist  - shielding) and there are no appointments with nurses. I had one of the most surreal conversations with a receptionist ever. This was after I’d held on and tolerated the most god-awful music, moved from 7th to 4th in the queue and then got cut off. I emailed a rather annoyed summary of my experience and they rang back almost immediately!

Resolution: ring again in 2 weeks when there may be an appointment. Yeah...

Apologies for the whinge. My mood will lift when the snow has gone and the sunshine appears.

214. All clear

No All-clear sirens, in fact, no appointment as it’s snowing heavily. I notice the Met Office has changed its single snowflake and a raindrop to a double flake - a bit late for me! I rang to postpone as the main road traffic was crawling and a doctor rang back within 20 minutes. He then proceeded to go through all my effing medical history till I wanted to scream ‘Look mate, I was there. Just say yes or no.’ Eventually he said that there’s no evidence of cancer in my neck lymph node, to keep and eye on it and see my GP if it gets any bigger. I pointed out that it’s easier to see an oncologist than a GP and he said several people had pointed that out.

My eyelid is also not cancerous but there is “an indeterminate mass” which apparently showed up on the last scan, a year ago - but nobody thought to mention it. Hmm. Now of course it requires biopsies and treatment, followed by corrective surgery. I wonder if they have an ageing chart and correct it to match the other baggy lid or if they go for a tight job. I already look ridiculous. Could I look any worse? Maybe I’ll have to swallow my pride afterwards and opt for a single eye-lift to match my NHS one.

Dennis is delighted, though he can’t stop asking me about my eye. I think the word ‘mass’ disturbs him. I just feel vindicated but my anxious tummy obviously hasn’t taken in the news because it’s still anxious. Now I just have Monday to look forward to. I don’t need my bloods doing after all as they have the results from December and the oncologist said it was close enough to the 4 weeks and the results were good enough. So, a quick treatment Monday and that’s me sorted for another 6 months.

Though I will be traipsing back and forth for eye thingies.

Anyway, I thought I’d let you know. I know I owe several emails but I’ve had stuff on my mind xx

213. More waiting...

I was just starting to write my update the other day when Dennis alerted me to a Prime Ministerial broadcast and there we are - back to shielding. Before Johnson had even finished umming and arhrrring, I’d received an email from Vicky, my former volunteer, reminding me she was available and asking if I wanted any prescriptions collecting. How thoughtful and kind is that!

It doesn’t make any difference to me, to be honest. I’m one of The Shielded Ones and can’t do a thing for myself; then I’m “Clinically Extremely Vulnerable” and can do some things - but please don’t; now it’s CEVs who should “return to Shielding”. What’s the difference? I’ve declined the food boxes BUT, and here’s the real perk, I have access to a much bigger range of Sainsbury’s slots that your common or garden online shopper. At last a perk! (Going completely off-piste - nothing unusual there - I genuinely believed they were called perks because they cheered you up. My dad was a purchasing officer, first for the Coal Board, then for the Electricity Board. I never knew a Christmas without these perks - perfume for Mum, countless bottles of booze, hampers; nothing I liked unless there was the occasional box of biscuits. As he worked his way up the promotion ladders, the perks got better. I remember once there was a huge box of chocolates which sadly turned out to be liqueurs. I was in my 30s before I knew the origins of perks but, by that time, the government had passed legislation against bribery, which is basically what it must have been high up the ladder. My dad did get a wonderful camera once when he went to the USSR....)

I digress. My main concern is whether or not my appointment with Dr U on Friday will be changed to telephone. There’s still time and I really don't want that because I ask far less on the phone and less is achieved. Maybe he’ll want to examine my errant lymph node. I can hope. Then I can have my bloods taken. Otherwise it will mean my poor goddaughter, who’s already frozen waiting outside for over an hour on Sunday, having to sit in the car park and freeze her arse off for at least 2 hours on Monday. She’s taken the day off especially (even though we’re now in another lockdown) but, last time, I was only about 45 minutes and it was July. If they need to test my blood first because they don’t have any results from Friday, my 30 minute treatment will be more like 3 hours. But I don’t want her coming into the hospital. It’s probably safer than most places but I’d find it hard not to blame myself if she caught the virus. Leeds is doing ok, not well but not too badly in the circumstances. It would be great of everyone I cared about got through without contracting COVID-19, or whatever the new variant is called.

As a CEV, I’m in category 4 of the priority groups, alongside my ancient husband who is over 70, so with luck we will be vaccinated by mid-February.

Talk about rambling...I came on to write about Sunday. Well, I’m here so it couldn’t have been that bad. Carol dropped us off and I rang Emma to pick us up about 4.30. Then we went in, Dennis parked himself in the huge and empty foyer and I went into Radiology. I was told I’d just be having an MRI so I protested as the more important factor is the node in my neck, so they explained they would be including my neck. It would take about an hour. So I dashed out (no signal in the hospital) and rang Emma to ask her to be there for after 3.30. Turned out she arrived at 3.05 and I didn't finish till 4.15 so the poor woman was definitely freezing her arse off. But no complaints, just her usual cheery laughter PLUS - wait for it - PERKS. She works for Nestlé. I got three huge bars ‘straight from the kitchen,’ ie plain wrappers. Who cares about a wrapper when there is mint Aero within!!

Why did it take so long. God knows but it was 75 minutes locked in that machine and all I can say is thank god for lorazepam, even if it’s past its expiry date. I just lay and listened to the banging and clattering and noticed a certain kind of music behind some of it - but it all changes so frequently that there was never a chance to really hold onto a rhythm or tune. It turned out they did 2 MRIs as the ophthalmologist wanted the pictures and the oncologist wanted the contrast dye. I did have to press the emergency balloon they give you to hold - my head had felt quite comfortable but, after a while, I realised there was pressure on a childhood scar and the longer I lay there immobile, the worse it got till I felt like I had a migraine just against the back of my head. The radiologist adjusted the head rest and it felt great- for 5 minutes till I realised it was pulling at my hair and the back of my head felt even worse. Despite the lorazepam, I had to work hard at staying relaxed and focusing my mind elsewhere or I’d have tried to get out. I could feel that feeling inside me. What a relief when I was rolled out and released. Honestly, that face shield made me think of Hannibal Lechter! Yet my notes, I’m told, describe me as “a lovely lady who is difficult to cannulate”. Yep, it happened again. This time, I had to tell the radiologist he was hitting a dead end. Ouch. My vein ballooned up but fortunately subsided, presumably as my tissues absorbed the saline solution he’d tried injecting. Vein 2 worked but it doesn’t augur well for next Monday. Only 2 veins, one shut down through overuse, the other contaminated by MRI dye. 

Roll on Monday. Oops, roll on Friday. Big day. Somehow, I just cant bring myself to even feel curious. It’s like my conscious brain won’t go there and my unconscious brain is biding its time. By Friday, my body will prove that I am actually concerned about the possible outcome of these scans. For now though, I just don’t think about it. Unfortunately Dennis does. The anxiety-induced vomiting is back. 

212. Resolutions

Well, I thought I’d get that (resolutions) out of the way quickly. I’m not a fan and, although I am fully aware I would benefit, I know they would be abandoned within days as I’ve never liked feeling obliged to do something.

I received a Fitbit for Christmas. It’s all-singing and all-dancing but I fear it will fail to inspire me. On the hour, there’s a slight buzz on my right arm that makes me jump slightly. Then I smile, knowing it’s a battle of wills between artificial intelligence and personal will. If I want to do 250 steps, I will. Mainly I don’t. I think I have a LONG way to go before me and my Fitbit have a good working relationship - maybe when I grow out of my stubbornness? However, I am intrigued by the analysis of my sleep. I haven’t been told off yet, though my ‘score’ isn’t anything to rave about. I need to find out what it all means, as well as why there are neon lights flashing on the back when I take it off for a shower. If that’s what’s reading my data (current resting heart beat 83, a lot higher than it used to be) then I have to wonder what lurid rays are penetrating my wrist!

That out of the way, I must do this: 

Sorry it’s not sparkly as it should be. It refused to cooperate.

Christmas in the Brown household was as expected. A lot of gifts from my dear friend who so loves giving - and they are all appreciated, including the Fitbit (you never know, it may yet succeed) - and from a few friends and... well, I said Dennis had cancelled his Christmas and, as ever, he meant it. I received a cardboard box in which was the Collectors’ Edition of Bryan Ferry’s 1974 Albert Hall show. This was bought under his guidance (my email, my credit card), not because I want it but because it would add to my ‘complete’ collection. As I don’t consider myself a collector, I think we can safely say it was for the satisfaction of someone else. The music is irrelevant. I haven’t listened; I don’t do vinyl nowadays. That was it, apart from the addition of almost-raw sprouts to our usual roast dinner. I should have had some pigs-in-blankets as a festive addition but they were black (“The instructions said...”). If I sound pissed off, it’s because I am. I appreciate that he is anxious and this is a manifestation of that anxiety but it did nothing to make me feel comforted.

Yes, I do have a degree of anxiety now. Maybe it was the ophthalmologist agreeing I needed an MRI. Maybe it’s the tests drawing closer (if I’m right and it’s Friday today, just 2 days and they’re done). I get surges of adrenaline which mean anxiety to me and I push them straight back down but, damage done, I know the anxiety is there. When all this palaver first started, cancer didn’t get a look in. All I cared about was my phobias and my ‘can’ts’ and how I was going to manage to get through everything. This time it’s different. I know my fears and phobias can be managed. I know I can get through the treatments. So there’s space for cancer and realistic thoughts. Yes, there is a chance the enlarged node in my neck is a metastasis (and therefore maybe the eyelid is too) but, equally, there’s the likelihood that it’s an enlarged node because it has to work harder in the absence of the axillary nodes. Anxiety v rational thinking. Sadly, I don’t reward myself for the rational thinking. I dwell on the feeling of anxiety and what lies beneath it.

The logistics are harder this time too. I have managed to arrange transport but it seems so unfair to ask a friend to act as taxi driver when Dennis and I have been sitting in a hospital and cannot swear we remain COVID-free. I’ve arranged one lift there and another lift home and, to my treasured taxi drivers, THANK YOU because it means I can zone out on lorazepam, squirrelled away since chemo for such a time as I might be expected to lie motionless in a metal tube with clanging machines which make it impossible to tune into distracting music. Hmm, maybe living next to a building site will have inured me. It doesn’t matter; I’ll be in Lalaland, singing quietly in my head while I lie motionless and fully compliant.

Then it’s a wait till next Friday for the results, followed by more blood tests (good luck there) and then my mini-chemo on the Monday, with the benefit, again, of my mini-hoard of sedatives :). This is followed by a two-week break and then D the Physio and back to the eye clinic. I hope that will be that for another 5 months before we start again but I suspect that, even if my results are good, Dr U will want  to keep a closer eye on me. That’s good of course but I’m beginning to think I should rename my blog “IT’S ONLY A WAY OF LIFE”.

SO...