171. Our changing world #1

Well, it’s a sad comment on my life that my whole day has brightened just because I’ve secured a Sainsbury’s shopping slot. Not just sad, downright tragic. Such are my priorities now. I have this obsession about running out of food. The cupboards are full (ok, mostly chocolate and associated products like chocolate digestives) so I wouldn’t starve would I? But I seem obsessed about bread. It would make more sense if I were obsessing about crusty baked loaves from the Village Bakery (available if I can find someone to go up there for me - I’m saving up my favours though for emergencies and essentials like prescriptions). No, I’m thinking Warburtons’ Toastie, your bog-standard sliced white, only thicker. Maybe I don’t like change. But I couldn’t credit last week when Sainsbury delivered almost everything but no loaf. So this time I’ve booked an afternoon slot and pray the beggars haven’t stripped the shelves before the shopper shops. Presumably last week, they hadn’t yet stacked the shelves as the shopping went through the till before 7am.

I don’t quite get why bread is so important. Two or three slices a day, one sometimes. Maybe it’s because bread is one of my ‘safe’ foods and I feel safer knowing the option is there for some toast if I don’t feel like a meal.

And sold out again

I also managed to get a small upright freezer. It would have been a fraction of the price if Dennis had allowed me to buy it when I first thought it might be a good idea. I could have bought one for around £120, used it for the duration and then left it in the garage or even disposed of it - it’s not much more than a week’s shopping. And it would have been delivered before I was in enforced isolation. But no, Dennis didn’t like the idea of more appliances (huh, he might have thought differently if it were a new CD recorder) and, surprisingly, I do defer to him on occasions. This was a wrong call. Within a week, you couldn’t find a cheap freezer for love or money (great minds seem to think alike). You couldn’t find an expensive one either, unless you want an American-style freezer bigger than your bathroom. Surprisingly, they were still available. So, on my nightly check just in case, how delighted I was to find not only a small freezer but one they would deliver to this area. It was AEG so almost 4 times what I planned spending but I think it’s a necessity now. There will be times when I can’t find a delivery slot and there is no one to get me that loaf of bread so guess what’s going in first!

Of course, we have to resolve the logistics of delivery now. They promise to take away all the packaging (fortunate since there’s no brown bin emptying) and not leave till we are happy with everything. I know freezers have something weird inside that needs removing before you can set it up. You can tell how highly technical I am? So... I’m in isolation. Do I just hide? It undoes Den’s 4 days of increased safety. Does it spread on shoes? They talk about keeping two metres away so if someone coughs, the droplets fall to the ground - do people pick them up on their shoes and tread them everywhere or does the virus magically die as it plummets to the ground? I have no idea and now I am picturing a hallway and kitchen entrance (it’s going near the door) riddled with potential covid-19. I am speaking/writing light-heartedly but there’s a degree of truth in all this. How safe is delivery?

Tomorrow is book group. Everyone is accounted for bar one and I’ve given her plenty of chances. One person needed help because applicants to the Facebook group have to answer a really tough question. It’s called the CH Cake and Book Group, because we meet at Cookridge Hall and members spend the first 15 minutes discussion the merits of this month’s cake (or frequently demerits - they don’t take the scones out of the freezer early enough; some like cream, some don’t; some like chocolate, some don’t; some tuck into carrot cake, I have to pick off all the nuts; and so on...). The said member had no idea what CH stood for. That really made yesterday (little things), it made me laugh aloud at the absurdity of this very intelligent woman probably wracking her brains for ages before asking. Anyway, a small number will discuss the book in Facebook while about 7 or 8 will be Skyping. Good luck with that one - I delegated it. It’s hard enough bringing 12 or 13 women to order once they get off-task around the same table but in their own homes?? It’s gonna be FUN.

I had a lucid moment at 7.28 this morning, so precise because I happened to check the time on my phone (a black, glass-domed watch-face, with 4 diamonds to mark the key points is not easy to read first thing). 7.28??? Yes, I was puzzled too but it seems I can do mornings as I’ve not slept since. Anyway, my latest theory in the ongoing saga of why I am on the NHS hit list is that I was hospitalised with grave immunity problems and developed sepsis last year. Maybe that’s why. I’ll have another theory by tomorrow. Meantime, no annual squeal at the tiny lambs :(

170. Little things

There’s a load of little things that have set me thinking. In no order at all:

1. Sue buying us a loaf and oven chips (blush) and driving over here to drop them off, including a lovely bunch of flowers.

Some people seeming to think that the worst thing that can happen in life is to run out of toilet paper.

2. Jenny and her husband, on their daily walk, taking a detour up our cul-de-sac, texting me and then our having a friendly chat at a safe distance.

The idiots in South Wales, according to John, our long ago best man, who kept trying to push those who were queuing to get into the supermarket but were maintaining the 2m distance - and then just pushed in and stood in those gaps.

3. Fiona, a complete stranger who, on our local community crisis website, offered to go to the chemist before 9.30 responding to my ‘dammit’ comment written at 11.30 and offering to go to the pharmacy again, just for me, someone she doesn’t know.

The local man on the same site who informed our local chippy, offering home delivery to keep afloat, that he wasn’t an essential service and should close immediately.

4. The local pharmacist delivering my prescription herself. It was such a lovely day, she needed a change of scenery! Yes, I frantically had to contact Fiona to stop her going!

My injections not having much effect. Still having to unlock each finger every morning. Still in a lot of pain when I move at times.

5. Dennis actually looking and listening outside to see if people were clapping at 8pm in support of the NHS workers. No one was so we did a little clap ourselves. Dennis??

Our i delivery vouchers not arriving so Dennis still goes up to the shop first thing in the morning. Logic says it’s safe - he’s always the first customer and he’s good about hand washing but there’s always a risk. NHS instructions are that, in this case, we should use separate bathrooms, prepare our meals and eat in separate rooms, maintain 2m distance at all times and sleep in separate beds. Come ON. He’s limiting himself for my sake. Isn’t this enough?

6. Lisa doing a bulk order from the local butcher so I could have my chicken leg and sausage. She’s keeping the rest in her freezer. She’d also already got me cans of vegetable soup (which keep me going when my appetite is poor) and chopped tomatoes for the little pasta I have left.

Sainsbury’s. Now what can I say about that without turning the air blue. The last three deliveries have been partial to say the least. I think they do our bags before the shelves are refilled from the night before. Last week, none of Dennis’s food (fortunately Emma drove over and left some from the store on our doorstep). I spend THREE days trying to contact them - all roads lead to Customer Services and all the UK seems to be calling them to get onto their vulnerable customers list and secure the chance of a delivery slot.

7. Miller Homes suspending work on the site. What a difference it has made. The roadworks are still going on but... oh and today they put up screens against their fencing so, from a sitting position, it was like all being back to normal. With the sun out, it’s bliss.

Some government bloke clarifying tonight that construction does not have to stop. Miller Homes - IT’S A HOAX. TRUST ME (like I trust you). I swear if Miller Homes starts up again, this house confinement will be unbearable.

8. Doing tai chi in the garden today, remembering neither form and thinking sod it, and just moving however I wanted to move. My feet and legs didn’t hurt at all.

My cording in my arm is tightening up again. There’s too many parts of me needing special attention. I can’t cope.

9. Mentioning I had no vegetable soup and 4 days later receiving a delivery tonight of twelve cans, thanks to my lovely Trina.

Checking out the website for myself, doing some calculations and noticing shipping costs. Profiteering doesn’t cover it. Like many Amazon sellers (hand sanitiser £15 for a 50ml bottle), they should be ashamed of themselves. I understand supply and demand (I didn’t fail Economics for nothing) but these are exceptional times.

10. The nurses coming three times this week, now masked, and jabbing my arm in the doorway.

Being singled out as an NHS vulnerable person who is “highly likely” to need hospitalising if I catch the virus; being confined for 12 weeks to the home, which fortunately does include the garden; and having to have a hospital bag packed, which brought back hideous memories of last year’s sepsis debacle. The thing is, I don’t know WHY I’m on The List. I don't match any of the criteria so what don’t I know?? I have a sore, needle-pricked x 5 arm, fingers and toes that lock, and knees that collapse (heaven forbid they start locking too).

That’s plenty for now and I still haven’t regaled you with the rant about the building site, with pictures. They’re ready and waiting but I had to express my gratitude to some lovely people. Apologies to anyone I’ve overlooked. I’m tired......zzzzzzzzzzzzzzz

169. Bit of a surprise

First of all, and most worrying to me, I couldn't spell surprise. I was so uncertain, I ended up googling it!! This has to be delayed chemo-brain. Or my injections are having the reverse effect from what’s predicted.

I’m currently waiting for the nurse to come, to give me an injection at the door. I know I forswore exclamation marks (supposedly) but this situation leaves me with no alternative!!!!!! The reason is this:

So I may open a window but not go outside??? I have a biggish garden. The building site is several metres distant. No one comes near. Why can’t I go out? Why can’t I go out in my car? I need to keep driving or I’ll need another flipping lesson!

Anyway, I rang the medical centre. The receptionist had no knowledge of these email messages but asked around and said no, I couldn’t stand at the door and have my injection there as it’s not a sterile environment. Then she put me through to the nurse, who hadn’t heard about these messages. I suggested she pop out to my car and do it through the window but she went off to consult and said no, going out in the car isn’t staying at home. True. Consequently I have three nurses wasting valuable time coming to my house to do my final 3 injections at the door!! Madness? Not if it keeps me safe I guess.

I kind of wish they hadn’t said ‘risk of severe illness.’ I have my hopes set on that mild version of the virus that most people will get, preferably the one that is barely noticed, as one medical pundit described it the other week. 

I was going to give you a photographic tour of my garden view , taken yesterday when I was allowed out, but enough misery for today. How about this instead: 

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Charlie Mackey is doing a daily continuation of his book (still top of the best selling books). Very different from the queues and shoving and stealing that’s going on. Thank you Trina for so kindly forwarding it to me. I love it

168. “Unclean...Unclean...”

Today was my third injection, up at the surgery. I arrived at the same time as another woman who turned out to be a staff member. They unlocked the door for her.
“Why are you here? We’re not seeing patients.” Not a smile.
“I have an appointment with the nurse,”
“Oh. Wait there then. She’ll fetch you when she’s ready.”
“Shall I go and sit in the car?”
“No, just wait there.” She locked the door on me.

So I stood in a cold foyer, no seat, aching knees, sore feet. I tried resting my butt on a window ledge. It triggered an alarm. So I thought I’d better keep moving or I’d seize up. Every time I moved, the automatic door opened and a blast of cold air hit me. I was the only patient on the premises. You’d think they could have provided a chair I would happily have wiped down when I was called for.

However, I now understand why it’s so hard to park there. There were only about 5 vacant spaces so the rest must be taken up by staff!! That’s probably 3/4 of the parking. Huh!

It was better in the pharmacy though most people tried to maintain the 1m distance. However, the shelves are half empty. Paracetamol is only available on prescriptions. I deliberately looked for stuff I know is being panic-bought. No tissues. No paracetamol (plenty of Lemsip, which is just as effective as it’s 500mg paracetamol!). No thermometers. 1 cotton wool. No Calpol. I just hope all those hoarders end up with many pounds worth of unused and unusable products as they find it just wasn’t needed. Meantime, there was an elderly woman trying to get paracetamol for her husband who’s just had knee surgery - she has to contact the doctor for a prescription. Good luck with that one!!

I got a reply last night from Sainsbury’s about the lack of delivery slots. Bear in mind, I contacted them as advised via INSTANT messaging on Monday. I don't call two days ‘instant.’ Yes it makes sense to give priority to the over 70s and those with health conditions and they will contact their customers accordingly. Hold on. Dennis is 72 and I have a health condition - but how can Sainsbury’s KNOW? It remains a mystery that will unfold in time...

I have been allowed to suspend my gym membership without the £10 a month fee, for the next 3-6 months. After that? Do I get the sack? I’ve been a member since before it opened - there’s loyalty for you - and I suspect they may have to close in the near future as there’s no way they can make money except by recruiting members. Short of letting one in at a time to use the gym, I cant see how they’ll work it out! Oh what I wouldn’t give for a steam and a sauna right now to soothe my muscles, breeding grounds for every bug going and more!

167. Sigh...

Well, I have had two of the six injections of vitamin B12 I require. PLEASE let this resolve my aches and pains because it’s really bugging me and denting my pride as I shuffle around. Injection #1 left a neat circular bruise and made me feel rather poorly for a day or so. Injection #2, three days later than it should have been but they had no spare appointments (!), is freshly stinging away. Unfortunately these injections sting but, quite honestly, it’s nothing after chemo. I’m having a light meal in case I feel unwell again but maybe it’s just the first that makes you unwell. I hope so. Unsurprisingly, the nurse now has spare appointments so I shall manage to get them all into a fortnight and one day (instructions were ‘alternate days, within a fortnight.’ It’s near enough). I’m told by those who’ve had this boost that it makes you feel 20 years younger. Bring it on...

Meantime, I’ve struggled with knee supports and done more Amazon returns in a few weeks than I’ve done in 10 years. I decided to get the knee supports to match my foot supports (Avidda) as I don’t react badly to them. They still had the latex/silicone grip so I tried one inside out... Yep, another excruciating reaction, more antihistamines and hydrocortisone cream and trying desperately not to scratch. But they help so much. I’m not giving up, even if I have to wear them inside out and over my bloody trousers!! Well, it’s not like I’ll be going anywhere, the way things are looking. Even the GP is only doing phone consultations now. My poor friend has a tooth problem. Dentistry is not something that can be done at a distance.

Today I did an online survey for Bradford University which is exploring the idea of a home-based diagnostic test for breast cancer. https://bradford.onlinesurveys.ac.uk/breast-health-screening-uk
Anyone can do it and it’s anonymous. But, never having breast-fed, I didn’t even know it is possible to produce nipple fluid. You’d think after all I’ve been through that I’d be hardier but I can tell you I am currently cringeing at the mere thought. I react the same when people on the Breast Cancer Now forums discuss their experiences of radiotherapy on a reconstructed breast or a partial breast following a partial mastectomy. my whole body tightens up in horror and I thank heavens for having the whole lot off. Long live the Nefertiti Club.

There IS just this one bust - beautiful, not boring. Look at that neck. Bet she didn’t wear knee supports!

My writing course in Harrogate has been cancelled/postponed, which is disappointing, but I’ve been short-listed for the March Micro-fiction competition at Retreat West. I feel quite chuffed. If you’re interested, there are 10 pieces, each 100 words long, inspired by the picture . I think you need to register to vote (otherwise someone might just keep voting for themselves) but you don’t have to be a writer to register. For me, there is one outstanding piece that will win and it’s not mine but, in case anyone reading this goes to look and votes, I won’t say which is mine till after the winner is announced Sunday/Monday. https://www.retreatwest.co.uk/march-2020-micro-fiction-shortlist/

166. The new c-word

I keep feeling so grateful that I was diagnosed when I was. Had it been a year later, I’d be living in terror right now regarding covid-19. My newspaper has kept level-headed but reported the details as they come in, one by one, and personally I think there’s been too much detail. That may be because I am of an age when I can think ‘What happened to polio (1950s), cholera (1964, I think that’s when my eating problems started), SARS, bird-flu?’ These things happen and we get through. I can see it’s wise to keep it as contained as possible particularly to protect the vulnerable, but there’s no need for a siege. However, this time last year, I was immune-compromised, a term I didn’t hear used until after the worst was over (typical). I think of my former colleague, still going through her chemo, and wonder how she must be feeling - c-19 on top of all the other worries. It’s bloody scary not having your normal immunity to even a simple cold and knowing that that simple cold could actually kill you if something goes wrong. Well, not the cold, the ensuing neutropoenic sepsis. So Alison, here’s a mental toast to you, your courage and luck/good fortune.

I should be worried I guess because, facing facts, we are both close to the vulnerable category, if not in it. I’m already consigned to the Older Persons MH Service (how dare they! It is a better service tho). However, neither of us has a pre-existing condition and Dennis has been through enough with his cold and cough virus (as have my nerves!).

As regards my own cancer experience, same old/same old... I’m waiting for my blood test results to know how to move forward on this pain. I’m also waiting for the referral to neurology and trying not to think about it because the parts of me that are affected, like my throat, are not areas that I want investigated! I gag when a doctor approaches with a tongue-suppressor :)  A newcomer to the Breast Cancer Now Forums wrote to say how excited I must be to be clear and Back to normal now and I simply didn’t have the heart to disillusion her. I think back to my Roll On Summer mantra with a wry smile now. Out of the woods, yes, but suffering in ways I never suffered before.

Which reminds me, my cording is back. This is probably because I haven’t been doing my stretches as assiduously as advised. But it’s hard stretching your arm over your head when your shoulder joints hurt like hell and you can’t clasp your hands because your fingers hurt equally badly! Lose/lose right now ;)

On a bright note, I’m heading back to keep reading The Mirror and the Light. I’m on about page 250 and have yet to find a superfluous word. There is some suspect punctuation where even repeated reason doesn’t illuminate her intention (“To right all wrongs, was his express desire: to make restitution, to see justice done.” I just happen to have it right here lol) but it’s as great a joy as the first two books. However, whereas I was able to say I enjoyed Bring Up The Bodies better than Wolf Hall, I simply wouldn’t be able to say without rereading all three. Something for another year perhaps, along with The Raj Quartet which gets brought out perhaps every 5 years.  And there’s a delivery from Jigsaw just arrived.

On an annoying note, I just arranged a full refund and a Hermes collection on Friday for our iron which simply stopped working. I tried all the usual electrical tests but nothing worked, including the iron, so I suggested we just gave it a rest. Today Den asked me where the working fuses were (as if I store dud ones) so I got straight online, in Chat to Amazon, as the iron is only about 4 months old and has been used at most for about 20 hours. Full refund, no questions asked. When I just told Dennis, he said ‘But it’s working now.’ Why did he ask for fuses? That was just in case. Apparently it has a cut-off if it’s overheating (he’s on the phone to Richard, our friendly former electrician, who explained it all). Well, it’s too late to reverse all the arrangements and an iron that cuts out through overheating after 20 minutes isn’t worth keeping, is it?

165. Plus ça change....

Oh definitely plus c’est la même chose! Apart from a glorious early Spring week (although, come to think of it, it IS March - I’m just losing track of time), life just plods along. Plod is the appropriate word - my lazy lope is a thing of the past as I carefully place my feet with each delicate step, keeping the number of steps to a minimum!

Nothing has changed. I’m still riddled with pain. I still spend at least an hour every morning, massaging away the worst of it so I’ve got mobility. God knows how I’d cope if rapid reactions were required! I’ve had a second blood test to check my results are accurate before deciding on a treatment (hopefully there is one - B12 injections seem promising, thank you Trina and Lesley). I’ve had acupuncture at the Robert Ogden centre at St James’s and at last my allergic rash is fading, thanks to the hydrocortisone and antihistamines. So much for knee compression sleeves being helpful.

Dennis has finished his counselling but developed a nasty cold and cough and I have shown my true colours as a wife. He may have nursed me faithfully through the ‘horrors’ of cancer treatment but he’s banished to sleep in another room for having a cough! In fairness to myself, I did move myself but he insisted the following night and who am I to turn down such an offer. I am a selfish wife, that’s who.

I had my follow-up Pilates session. Quite what it followed up is debatable as I rarely remember to practise, usually when I’m cleaning my teeth and, if I follow the instructions, I’d end up with toothpaste dribbling down my front. I have to soften my knees, pull back my pelvis so it’s gently tilted and lean my spine forward. I then have to raise my sternum and drop my shoulders and imagine my chin is on a shelf and slide it back to the edge of the shelf (3). Go on, try it. Do you feel and look like an idiot?? After a lifetime of leaning back, hips thrust forward (2), I learn this is Very Bad Posture and needs rectifying. Since I’ve developed an old-lady stoop (1), I’ll try anything. It’s too soon to be an old lady.

In fact, today I had another urge to dash off an irate Letter to the Editor. Janet Street-Porter was bragging about her confident stride as an over-70, “not a senile shuffle,” and I thought of all those poor people probably in as much pain as I am but consigned to this amorphous group of over-70s labelled senile. There could be loads of reasons for shuffling. Regardless, it seemed such a contemptuous generalisation. Grrr. I am over-sensitive as I’m very conscious that this simply isn’t me. I also nearly picked up the phone to give Sainsbury’s online a taste of my incredulous ire, till I decided I should have been up at 9 to take the delivery myself. I ordered some hand wash - our usual plus a refill pack and I thought I’d test a new one. They had none of these items in stock but substituted with what they did have. Result - 8 bottles of hand wash. Honestly, who would buy EIGHT bottles of hand wash. The ‘shopper’ must have assumed I was a c-virus neurotic who’s planning to live off stashes of chocolate for the duration, chocolate being the only other thing bought in bulk. It was cheap, honest!

I know things can’t ever go back to normal. In cancer-world, we are advised to establish “a new normal.” I’d reject this as a cliché as awful as “the cancer journey” but I’m afraid it’s true. There has to be a new idea of what is normal in my world and that’s both entertaining and awful - and for perhaps my next entry. I remember way back saying I wanted to avoid pity-parties but it’s still hard.

                         

Ending on a positive note, I have learnt how to do an accent on the ipad at long last and I have my copy of The Mirror and The Light, all 882 pages, to savour. Do I whip through it (I know he’s executed so there’s no surprises) or do I read it sl-o-w-l-y to make the most of the final part of the trilogy? Having just galloped through the latest Ruth Galloway (yes Maureen, I’ll bring it on Monday for you), I think I’ll go for the slow read this time.