187. More frustrations

Rant #1

1. Rheumatology aren’t accepting any routine referrals at present. Ok but this is not necessarily routine.
2. My GP practice has tried to contact both the Rheumatology service and the Rheumatology Manager and has had to leave voicemails. Of course there have been no responses.
3. Rheumatology is unlikely to have gone on holiday.
4. The referral says “as the patient would like to speak to someone before her oncology appointment.” No, it’s not patient-led. Oncology expects me to have been seen by Rheumatology by Friday 10 July. There is no chance of being ‘seen’ but spoken with might be helpful. However, it’s getting too late now for anything constructive to arise from it (if it’s needed).
5. UPDATE: I’ve rung and spoken to the Oncology secretary and she’s going to give it a push. “It sounds like someone medical needs to intervene.” Fingers crossed. One rant may be removed but I’m never going to be popular with Rheumatology from now, am I? Why do I always need to be liked???

Rant #2

I received a letter from the DOHSC outlining the plans for The Shielded Ones. They seem to be purely random dates. From 6 July, I am free to go outside for exercise as much as I like. That would be fun if I could walk, painfree, without looking like I’m wearing flippers. I may also form ONE social bubble. Well that’s great considering that everyone else has already set up their requisite number of bubbles (obviously family first) and there’s no one left to bubble with unless they break the rules. And I’ve no wish to bubble with anyone breaking the rules (oh this sounds self-righteous) - the rules are aimed to keep control of the number of contacts and therefore the risk of spreading the virus more widely. Yes we all know that but... it can’t apply to me surely? One extra contact won’t matter. A trip to the seaside won’t do any harm - tell Bournemouth residents that!

BBC News - utter madness? Protection from the sun but not the coronavirus. Ok, makes sense...

From 1 August, shielding is paused and I am free to do as much shopping as I wish, I may go to work as long as it’s safe to do so (what do they mean? Either it’s safe to lift shielding or it isn’t, full stop). I must maintain social distancing and remain cautious - so the advice is “to stay at home where possible.” Really, isn’t that just going round in circles? You can now do this, that and the other but really it’s not that safe and you’re still at risk of severe illness, so try not to! I despair.

It does make me wonder whether the government has the slightest idea of the risks behind their decisions. The virus is still around. The R numbers are not at comfortably safe levels (and probably will soon soar in Bournemouth) but we are all champing at the bit, hankering after our freedom, and they feel they must give it to us. But only on those dates. So if I go to Morrison’s on 31 July, I’m breaking the regulations and I am taking my life in my hands. A few hours later, it will be safe. Ish. Well, maybe. Probably. But just in case... yes, you can go out, but don’t. That’s how I’d rewrite that letter.

Then of course there’s the fact that 2 million poor souls will burst out from confinement only to catch every bug going, apart from the coronavirus I hope, because we’ve zero immunity to the current climate. That should be fun.

I’ve also had to reregister as a vulnerable person because I made the mistake when I first registered of saying I had a means of obtaining food. I did. I have an annual delivery contract with Sainsbury’s and we always get a weekly shop. Apparently that doesn’t work any more. The local council has advised me to reregister and say no, I have no means of shopping. Unfortunately it does mean I shall now receive a government food parcel each week - but I can send it back with the driver. What a waste. Why not just have a tick box ‘I do not require a food parcel?’ But if I don’t comply, I will lose my place on Sainsbury’s priority list. Thinking back to my hysterics over the lack of a small loaf of bread in the early days of lockdown, I believe it’s wiser to follow all these stupid little games.

Rant #3

Sainsbury’s has this rule you can’t get round - only one shopping slot per week. That’s fair at the moment. We lost our regular Friday slot early on when it was impossible to book anything so I grabbed a late Saturday slot. Then the one-a-week rule came in so we were stuck with Saturday. We prefer Friday (please don’t ask - it involves my husband’s very fixed routines) so each week, I click on Friday hopefully - but a red box comes up saying only one delivery a week, so Saturday it is.

On Monday, I routinely checked for Friday. Up came the red box so I selected Saturday. I then did a random shop over £25 to secure the slot, paid and left it, knowing I could go back any time till 11 tonight and do a proper shop. This morning at 9am our shopping arrived, including a £7 fee for delivery. I checked - no text yesterday to alert us about payment, no email apologising for substitutes, nothing except last Monday’s confirmation. And bugger me if it didn’t say Friday!

Sainsbury’s telephone customer services are always helpful so I rang them. What had gone wrong? I got an obdurate woman who simply kept repeating we sent you a confirmation email and it’s your responsibility to check this. No ‘oh I’m surprised that happened - leave it with me and I’ll check.’ No ‘that must be frustrating. I’m not sure anything can be done now but I’ll check.’ She was repetitively polite to the point of rudeness, with long silences where I could hear her thinking ‘how can I get rid of this woman?’

I asked for an address so I could put my dissatisfaction in writing. There is none. I pointed out that early on in the crisis Sainsbury’s removed their email contact, which I thought was poor customer service (in fact all the businesses linked to Sainsbury’s have done the same, places like either Comet or Argos - I forget which) but there must be an address. No, just the telephone service. So, to take my complaint further, I need to ring this number and possibly speak to you again? Yes, that is correct. I said this was the most unsatisfactory service I’ve received from Sainsbury’s, at which point she informed me she had noted all the details to pass to her manager. I pointed out that, had she made that comment at the start, I would have been satisfied and ended the conversation.

So we have a ready-made meal for Dennis (but on Saturdays he always has X, Y and Z), we have an X but no Y or Z, we have Dennis’s milk but not mine, no bread (got some on the freezer ;) ), no vegetables, salad or fruit, apart from the red grapes we didn't really need. I now need to unwind from that bloody patronising woman and a stupid website that - wait for it - has now removed the red box. I think I will order £40 worth of stuff every day next week out of pettiness. Maybe not as the delivery men will bear the brunt of my pettiness - but I must get some bread and milk. Plus another £35 worth of stuff to avoid another delivery charge.

Rant #4

The patio door stuck yesterday. Why not? Join all the other hiccups that cause frustration. I have learnt a harsh lesson - your home emergency insurance doesn’t cover anything not arranged by them so I dutifully rang and they said no problem, they would arrange for someone to come out that day. I got a phone call from the firm confirming the arrangement and was told to expect a call 30 minutes before arrival. They came at 5 minutes to midnight. It was all fixed by half past midnight but... let’s just say someone was NOT happy (routines again) but he broke it so... Suffice to say, we are advised to get a new door. I wonder if that’s covered by our insurance because it will cost a bomb. It’s not UPVC and the whole thing will need redoing. Oh well, more into the money pit we call home.

A nice distraction from my cancer-related woes. And so good to be able to rant it out of my system. Just hard luck only any reader who unfortunately has to take this. Apologies. I hope you are having a chuckle at my expense - it’s the very least I can offer.

186. Caught between three stools

 Sorry, I’ve been waiting for news and of course, tomorrow never comes. Three weeks today I’m booked in for my 4th zometa infusion. Remember - the acid dripped in that sounds like a nighty-night special tea? Between now and then, I need to get my physical state resolved and here’s where I’m stuck:

1. Kind GP with a lovely telephone voice (the one whose text I got at 00.15 one morning offering me a consultation if I rang back within half an hour?)...anyway, nice GP has made his referral to Rheumatology. At our last consultation over the phone - last Monday? - he told me Rheumatology had suggested he try me on a mild steroid treatment used for rheumatoid arthritis, which I don’t have, OR that they could talk to me. Since steroids and I do NOT make good bedfellows (I’ll end up with more side effects), we agreed on the conversation as my best option for now.

2. Nice oncologist, Dr E, made it clear she expected Rheumatology to have seen me and to have ruled out all rheumatological (?) problems by the time I next speak to Oncology on 10 July. She sent them a copy of the letter sent to me, rather vague and, like all oncology letters, still inaccurate, which hardly suggested any sense of the urgency there is. It just said that she and I thought it would be a good idea to be seen by Rheumatology before my next treatment.

3. Rheumatology is still in the lockdown mindset of See No Patients. They sent me a letter, following Dr L (GP)’s referral saying a clinical decision had been made that I didn’t need to be seen and my GP would contact me, as he did, to discuss their suggestions as a way forward. In response to then getting the oncologist’s letter, they sent me a further letter reminding me I didn’t need to be seen and that this was normal practice in the current crisis (understood). Unfortunately I didn’t receive that letter until I’d had the conversation with my GP and agreed that it would be better to take up their offer of talking to me so I don’t know if the ‘clinical decision’ includes that offer to talk to me or not.

Lost the will to live by now? That’s how I feel. I can understand a hospital clinician thinking maybe a GP’s referral can wait but not an oncologist’s. If you’ve got so far as to require the services on an oncologist, your health may not be the best and if you have had oncology treatment, it may well have affected your health in adverse ways as well as killing off those nasty cancer cells. I’d have thought the rheumatologist would recognise that the oncologist knows whereof she speaks (where’s that from? Probably Shakespeare. It’s always Shakespeare). Instead I get a feeling they already think I’m an outright pain/hypochondriac who needs a sharp reminder to stop fussing.

Am I fussing? My instincts say yes but my body and common sense say no. I can barely do more than hobble now, unless there’s a fair bit of preparation of my knees and heels. My hands are awful, with all the pain of rheumatoid arthritis but none of the visible effects (because I don’t have it). I have problems holding cutlery now. I’m clumsy and can’t do simple things like lift the kettle or open a bottle. My worry is, if this has been caused by the zometa and it’s still getting worse even though my last treatment was 5 months ago, what if the next treatment makes it worse? What state would I be in? It doesn’t make sense in that it’s 5 months since any treatment, but the onset and the deterioration fit exactly with the treatments. Something in my chemotherapy has caused this and I don’t care if it’s oncology’s or rheumatology’s  responsibility so long as SOMEONE/ANYONE explains it and resolves it. I’m very reluctant to have the next treatment if there’s a risk.

But a phone conversation with an oncologist who will not be up to date with my notes (it’s always someone different) is going to be hard if Rheumatology hasn't ruled out the rheumatic side of things, putting the ball firmly back in Oncology’s court - where it belongs. I will only have the weekend to make a serious and informed decision, without much information, because I can safely predict the oncologist will say ‘we don’t know.’

By now you’ll have worked out why I’ve put off writing this. And I do apologise. As they used to say at the beginning of Soap (the comedy series in the ‘70s?) “Confused? You won’t be after this episode of Soap.” And you ended up more confused than ever. Oooh, you can buy it on a t-shirt!

                     

185. Another year gone by...

Since I’m one walking (almost), talking mass of side effects PLUS my life is consequently quite limited PLUS I’m living the life of The Shielded Ones, things are singularly unexciting on the Jan front, let alone the breast cancer front.

Having written that, I can stop saying Breast Cancer as I don’t have it and haven’t had it for well over a year. I just have to contend with all the damage done by the treatments. I can live with that. I am happy to remind myself and the world that I DON’T HAVE BREAST CANCER.

I turned 69 on Monday. I hadn’t planned on celebrating but, as usual, Trina twisted my arm metaphorically speaking. We had afternoon tea delivered by a local catering firm and dined on delicate sandwiches and a LOT of cake (which lasted us two days). (I’m not noted for my food presentation skills - nor would you be after my experiences in Domestic Science - I do know how to clean behind taps though). Fortunately we’d been warned so D had no let-out that he’s just eaten and it was very tasty. I got three bouquets of flowers, all of which are still going strong (well, one is flagging but I’ve just bucked the roses up with a plunge into boiling water that usually does the trick). I also got a video of Sheila demonstrating that she has taken to piano lessons more successfully than I did and a rendition of Happy Birthday (hmm, I wonder of it’s copyrighted - I could put it here!!); and a chatty email from Lesley.



You may notice one source of gift remains missing... Dennis did the usual routine of making getting me a present (found by me, ordered by me, paid for on my card) such a toil that I suggested he forget it. His brother redeemed the Brown reputation with a gift voucher which inevitably will be spent on books.

All in all, a nice birthday. I remember disliking my 29th birthday because it marked the beginning of my 30th year and 30 was completely grown up, no excuses. None of the others (39, 49 etc) bothered me but there’s something about being in my 70th year, particularly while my body is feeling so decrepit, that makes me feel I’ve entered Old Age. Certainly in terms of data and statistics I have. Mentally I’m nowhere near. I need my body to perk up so I don’t feel that 70 will mark a steady decline. Apologies to my 70+ friends - I know ‘you’re only as old as you feel’ and ‘age is just a number’ etc etc but I’m talking about how I feel right now. Yesterday I stripped and remade the bed. That was it. Done in for the rest of the day.

Today I talked at length to someone from Breast Cancer Haven about my ‘side effects’ as I feel there are several people, each of whom knows about things from their own perspective, each willing to deal with it from their own perspective and each wanting to refer it on to someone else, who of course refers it back. It’s good that they want to help but no one is actually doing anything. Rheumatology has decided I don’t need to be seen and passed it back to my GP. I got a text asking me to reply within 30 minutes if I wanted an evening consultation with my GP. It arrived at 15 minutes past MIDNIGHT.

It was good to have someone to talk to, though she needed me to go right back to diagnosis, so that took an age, but she had no answers beyond the fact that Rheumatology might be more responsive to the referral made by the oncologist. Might. What if they still don’t think I need to be seen? I don’t believe I have a rheumatoid illness but I suspect I need a rheumatoid treatment. If not, I don’t see how I can risk having the next zometa treatment in 4 weeks time. Once it’s in, there’s no going back. If the problems increase exponentially with each dose, life will be rather difficult.

Now I shall return to my latest addiction. The easiest art available. No paint, no mess, no shaking hand and inability to grip a brush. Just a simple app, choose my design and then tap the screen - painting by numbers in the 21st century. I remember Mum doing a Painting By Numbers she got for Christmas when I was about 5. It hung above the fireplace till we moved and was never seen again. I distinctly remember the oily smell that clung to your tonsils, yet they were the tiniest, dinkiest pots of paint you could imagine. Anyway, none of that nonsense nowadays. If you want to give it a try as a form of relaxation, it’s in any App Store, free, and is called Happy Color. This is one of my favourites, though I have no idea what it can be. I like buildings and landscapes, with the occasional mandala.

184a. PS

This can’t go unacknowledged:

Anya, Lottie and Emmy on their sofa

184. My changing world #7

It’s official. I have Government approval to leave my house, go for a walk but not have contact with people. That’s rather difficult, particularly since I want so much to have contact with people. It came across as a bit of an afterthought as if someone had at last said ‘What about the ones shielding? We seem to have forgotten them.’ So, although it actually matches Dr U’s advice, I’m wary. We’ve been shielded so long now that we must have low immunity even to the usual coughs and colds and the data indicates that, though the risk is low here, the risk is still there! Given that I am now contending with what may be an auto-immune problem on top of the ‘breast cancer within the last 5 years’ predicted vulnerability (I found out at last), I’d rather use my own judgment like we did when Kevin and Carol came round and we each sat 3 metres apart in a kind of square!

 Kathryn has just driven across from Wetherby with the girls to collect the Migraine Maker (aka rainbow blanket). Unless they are very good actresses, I think they loved the it. They’d made me a Thank You card with a picture of a mermaid (I think) and made me a little bracelet. It won’t be long before Anya is old enough to learn to knit. No one in her family can knit of course - I’ve always done it for them - so maybe she won’t learn. It was just so nice standing in the sun chatting to another person, albeit 2 metres apart.

Then it was time to pop round in the car, regardless of the orange spanner on the dashboard, to deliver the 60 mask extenders I’ve made for the hospital. Someone local collects all the donations and then packs them off. I think it’s a bit late for these and, much as I’d like a second wave just to prove what utterly reckless decisions have been made about relaxing lockdown lately, I really would prefer they were binned than needed. Driving back, I misjudged the turn into the drive and scraped the car along the low drystone wall. There are long and deep white scratches on my lovely ‘new’ dark grey paintwork now. I’m beginning to wonder if I’m safe to drive, yet I felt completely fine driving around. I can’t afford these misjudgments. I know it could happen to anyone but it’s happening to ME.

Tuesday I had a phone consultation with yet another oncologist, a Dr E, who sounded lovely. She seemed disappointed that there’s been no change in my joint pain despite being off the anastrozole - Dr U said 6 weeks, but perhaps he meant it would completely go in six weeks rather than I’d see some improvement. Well, my scepticism remains. There’s zero change. I’m still like an old lady in my body. Anyway, this doctor has made a referral to Rheumatology, asking them to see me before my next scheduled treatment in 5 weeks time. In normal circumstances that just wouldn't happen but she seemed to think I’d have a phone consultation within 2 weeks and then they’d want to see me at clinic. I’m hoping, even when they find nothing, that they’ll have useful suggestions for pain relief so I can move about with my usual mobility. I’m still agile - I can still hold my knees to my shoulders and touch my nose with my big toe (sitting of course!!), the usual things one does with one’s legs 😉 - it’s just when I move the particular joints that either they are locked or they hurt rather a lot.

So that’s Oncology, Neurology and Rheumatology, all because of chemo. I asked whether it could just be old age, speeded up by the chemo but Dr E was emphatic that I’m too young for old age. I don’t bloody feel it! It was reassuring to hear that though, with 69 approaching!

Just to prove I’m not just a whingeing grumpy old git, this was sent to me. It is me to perfection: