208. Waaaah: Woman with a Tantrum?

I've hesitated to write this but I keep reminding myself, my blog is for me first and foremost. So let me start with a warning and you can opt out.

It started yesterday with a visit to Oncology Rehabilitation to see my favourite physio, D, who I last saw in February. By the time we got there, I was jiggered. Maybe radiotherapy did affect my puff after all. Maybe, the grounded me thinks, it’s simply lack of exercise. Fortunately we had a long wait so I was back to normal by the time D called me in. Normal? For some reason, I felt quite anxious, even nauseous.

We got off to a great start, with D introducing herself in her jolly way, as if we’d never met. But maybe that was a good thing because she took a broader remit than before and went through all the exercises I’ve been given over the phone, assessed what I needed from each and adapted the exercises and showed me ‘short cuts’ and aids for when I find them too painful, as an alternative to not doing them. She also assessed the arm I hurt when I fell in the early summer which has never really healed. She diagnosed referred pain from an injury to the socket. Exercises for that now!

Then she looked at my left arm and the problems I have with my scar and absence of breast muscle, which can make movement/exercise very painful. I’m doing the massage right (well done). I ought to be able to stretch further (exercise avoidance), and although I have some swelling, it’s not sufficient to indicate lymphodoema (thank god for that). Then she parked me in front of a mirror and I saw my full scar for the first time. That’s TWO years of not knowing exactly what’s going on. It hasn’t been avoidance, more practicalities: we don’t have a mirror like this. I look down on my scar, I see part of it in the bathroom mirror, but I’ve never seen the full route. Now I was intrigued to see how far it swept under my arm, to notice that it IS a clean sweep, not the tangle that I prod and massage. I’ve only felt it, not studied it, and it feels shorter than it is. I was also shocked to see how deep into my ribs it goes. No wonder those ribs feel so sore.

Then I burst out laughing. It wasn't quite what she’d expected. Maybe she expected tears? However, I suddenly thought about the idea of having a reconstruction. If I’d opted for one (I don’t think I had the option at the time because the margins were so tight but, 2 years on, I probably could now), if I’d had one in 2018, it would have been a 34B and I’m sitting there with this solitary boob looking like nothing I’ve ever seen on my body, weighing in at a generous 36D. I’d have had a severe boob imbalance! 

So why the wail? I asked her opinion about the pain in my joints and muscles and she said I needed to regard it as permanent, something that might improve with exercise but, in her experience, I’m not likely to end up pain-free after all this time.

So I am terribly upset, made all the harder because I don’t want Dennis to know how upset I am. He’s ‘shocked’ but accepts it and, when I said about how I didn't want him to be waiting on me hand and foot for ever, he said he didn’t mind. I suggested we get a cleaner. Nope. Mind you, he didn’t say anything when I suggested we get a gardener. A glimmer of hope.

When I started this blog, I was optimistic in calling it “It’s only a disease.” But I did really believe that. I still do. However, upon reflection, with the value of hindsight, in retrospect, whatever: I’ve refused to adopt the cliché of ‘the cancer journey’ but it is a long, winding road with pot-holes and giant boulders to navigate round, It’s littered with side roads, some of which sweep round to rejoin; some are exits to something better, some are booby-trapped (no pun intended), some are dead ends. I assumed the road would lead back to good health. I would compromise and settle for OK health. But if this is the best I can hope for, it’s pretty shitty and not at all what I expected. I AM grateful I’m cancer-free and I know this is a blow I’ll recover from. I know too that I could be ill with a lifelong condition like rheumatoid arthritis or MS and I’m not, so things definitely could be worse and for that I’m grateful. I just feel really, really pissed off that the cancer treatments have done this to me. I’ve not read about it anywhere. Mind you, I’ve only read some leaflets - I have several books about breast cancer but I’ve never felt like reading them.

It’s a Hydra and I’m no Heracles.

And I want to yell “IT’S NOT FAIR.”

207. And so it continues....

Now I have high cholesterol and, for the first time in my life, high blood pressure, though that has to be monitored because it may have been a blip. Unfortunately, I can’t see the nurse for blood pressure (Covid restrictions) so I have to buy my own machine. I refuse to turn into a BP fanatic but I know me - if I get a machine, I’ll be reading it every day ‘just in case’.

My medication pile has grown, with the additional statin now which I “have to regard as lifelong.” I tried statins BBC (before breast cancer) and stopped them because they caused muscle pain. How ironic that I can happily take statins now because I have so much muscle pain, I don’t notice a bit of extra. I am not a great fan of this ageing process. I can’t keep on laying everything at cancer treatment’s door. But what next? I may have the answer in that the GP wants me to check in in 6 weeks time for a cholesterol test to ensure levels have dropped, a blood pressure check and... a check for diabetes. I guess we’ll be adding that to the list. Oh, and the doctor suggested a referral to the Opthalmic Clinic for my eye and the Lipid Clinic to check my genetic predisposition for heart disease. I declined. I have two referrals I’m still waiting on. I will continue to squint with a cholesterol-swollen eyelid:

 

            

Accidental selfie!

Apparently there’s a landmark mast in the distance. But I’ve no idea what is is...

                So here is proof that I really am trying. We went to Surprise View on Otley Chevin, from where you can see over Wharfedale, as far as York in one direction and Lancashire in another. That of course is on a very clear day and with spectacular eyesight. Parking was a tight squeeze. If I’d been wearing my other parka, I doubt I could have got out of the car without clonking the car next to me! Then it was a nice flat walk, a few steps and a gentle slope to the view. It was a glorious day but so cold, I really thought one of the reservoirs below was iced over. Turned out it was birds.

 

A bit of outlying Otley, a reservoir and a lot of Yorkshire grass

The place was surprisingly busy. I guess everyone was trying to get their outdoor exercise - the odd jogger, quite a few pockets of young men who didn’t look as though they had an purpose (maybe they are furloughed and bored) and of course the perennial senior citizens. Since the paths are uneven, strewn with boulders, puddles and odd patches of grass, we weren’t able to walk far. My feet couldn’t manage it and I couldn’t have walked the short distance I did without relying on Dennis for balance. But what a lovely change from exercising indoors (that is not going well, so I’ll keep quiet on that).

What else? I got fed up and cut myself a fringe. Being so grey/white, you can’t tell how uneven it is but it covers my receding hairline rather well and I no longer have to keep flicking my hair out of my face. It’s great news that the hairdresser’s and the gym/pool can reopen next week but I’m not sure I’ll feel confident about dashing off to either immediately. It’s like the last lockdown. Spend all that time without contact with the world and basic immunity must be down to minimal. I’ll build up exposure to colds and coughs gently, I think. Good god, what’s happened to me?? HOWEVER, I have booked myself in for reflexology and reiki in 10 days time. Bliss.

Meantime, I continue to be utterly depressed whenever I look out of a window or go to the side of the house. I feel like I’m being gradually squashed by these enormous houses. Honest, they were just little rectangles on the plan and that was alarming enough but the reality... I need an emoji or two here! Anyway, this is as far as they’ve got:

Add caption

I'd love to add captions but my blogger.com has gone potty and all I can see is the coding. Basically, one is the house just the other side of the fence - our kitchen window looks directly onto our hideous hedge and their blank wall. The other is the lower part of that side of the garden. What a lot of houses - and how ugly. The Yorkshire Housing houses are all painted white and grey to blend with the village. We get this!

206. This is how it should be

Today I got some fresh air and (sun)light on my face as I walked with Dennis to post a letter. I actually plonked myself down in the bus shelter while he posted the letter as I didn’t trust myself to cross the busy (arterial) road quickly enough but it’s a start. This time last year, we picked up conkers. This year, I wouldn’t be able to scoop that far down!! What has gone wrong?

I suspect a significant factor has been the lockdowns. For almost 5 months, I was under instructions not to leave my home. But I didn’t try hard enough to maintain a reasonable amount of walking round the outside of the house, let alone exercise. Everything was just so painful. And now of course I’m paying the price, with swellings in places I didn’t know could swell. Gone are my skinny but shapely legs. Bring on the support stockings! Though not yet please. Maybe I can exercise away these unsightly lumps?

Quite how I managed the walk is in some ways a mystery unless you believe in the efficacy of EFT. At 11, I plonked myself in front of the ipad feeling exhausted, and zoomed into an EFT session. For once, we all had several factors in common, including long-term pain, fatigue and frustration, so each of the rounds of EFT we did was directly relevant to me. At 12, I came out feeling energised and a bit more optimistic. Just from a bit of tapping? I then did some of my physio exercises which I haven’t been able to face for a couple of days so, at last, I can fill in my online form with a few ticks. These progress charts have no room for excuses or reasons so my record looks shameful.

That just leaves my hand exercises - I was doing so well with my green squares and now the chart is marred by a beige one because I forgot to finish them and I’m too honest to cheat, even for the aesthetic effect.

Look how close I am to the end of the programme (top line). I’d like to say the time has flown by but it hasn’t. And then what? The pain level is as high as it was but my hands are definitely getting a bit stronger. Now when I grasp something, I just say ouch. Before, I dropped it!

I also have to do my breast/arm exercises which I keep forgetting to do. I think people who know me will recognise that this is all characteristic avoidance and aversion to the idea of physical exercise. This has to change if I’m not to age prematurely. However, I’ve already finished series 4 of The Crown. Unfortunately, this multitasker can no longer do more than one thing at a time. Netflix won. 

As regards The Crown, I wasn’t impressed. Too much of Thatcher and that annoying Princess of Wales, let alone reminders of what must be the most hideous period in women’s fashion. And I went along with it!! Verdict: a bit dull. Queen’s Gambit was more exciting and that’s about chess, which has always been beyond me.

205. Just for a nice change

 

We snuggled up on the sofa and watched a live gig last night. Unfortunately we had to watch it on Den’s laptop as my Chromecast doesn’t support laptops any more and we’ve never thought to invest in something more up to date. So that goes the same way as my iPod Shuffle which was soooo good.  I hate this built-in obsolescence. My Apple Pencil is on its way out - its battery is inaccessible and has a limited life. Good job I don’t use it much.

Anyway, back to the gig: The Smoke Fairies, whom we first saw a decade or more ago, warming up the audience for my my beloved Bryan. I just turned to Den and said “You like this, don’t you.” He nodded and he has every track they’ve released (and more, but don’t tell anyone). He also received a collection of Smoke Fairies special stuff, including very personal things like shells in a tin, which Trina arranged for his 70th birthday in 2018. I can’t repeat his reaction in writing (he also got stuff from several of his heroes like the Green Pajamas, Cliff Bennett, Randy Newman, so it was a bit overwhelming for him lol). 

We’ve seen them as the main act at the Brudenell Centre (when Den started collecting Bear’s Den, their supporting act, who I must say are rather good) and I think we had tickets but had to miss another gig, maybe when I was ill? Watching on an 18-inch screen was a bit strange but perfect harmonies and excellent guitar playing just need good sound in the end and factor in the absence of crowd noise - it was great. I felt sorry for them with no audience to feed off but I don’t remember their patter ever being anything but awkward.

I’ve just finished my first book in a month. Normally I’d have read 8 to 10 books but recently I just look, sigh and leave it. The book was Dear Fatty, Dawn French’s autobiography written when she hit 50. It’s a series of letters addressed to various people in her life, Fatty being Jennifer Saunders, her late father, her mum, brother, daughter, various friends... At first I disliked it, it was so unrelentingly Dawn French in her comedy persona and I wanted to slap her. As I couldn’t attend book group - I was booked for Part 2 of The Haven’s Dealing With Change and Transition - there was no pressure to finish it but I picked it up yesterday and read 3/4 in one go. On balance, it was quite readable and therefore enjoyable and she did make me laugh a few times. It was sad though to realise the things that have happened since, like her divorce, Rik Mayall’s accident and, later, his death; Jennifer Saunders’ breast cancer, all of which would have influenced the whole tone of the book I think. Not that she could write a PS. That would be another book entirely. 

Lying next to me is my next read: the 26th (?) Jack Reacher novel. No one said my reading was intellectual lol. It’s young bro, Anthony, who has had to change his name to Child so he can carry on the franchise now Lee Child has retired. I think they wrote this together. I’m not sure I approve. I’d rather Lee Child had sent Jack out in a blaze of glory but I believe there’s a TV deal with Netflix or Amazon Prime so he has to keep the stories coming. I just hope the casting is more within his control. The idea of diminutive Tom Cruise flattening a team of six private security guards, armed and immovable, with just a few choice moves with elbows, feet and knees is risible. May Anthony write as smoothly as Lee. Fingers crossed.        

Just this moment got a hospital physio appointment (but I may not be allowed to go as I’m CEV -hospital policy, sigh). I was about to say I didn’t need it till I realised it was D, my excellent oncology physio who I have confidence could look at the whole of me and sort me out. Fingers crossed again.

I say fingers crossed. I can’t physically achieve the move right now lol

204. Progress

First the good news. I received my mammogram letter today - all clear. I just put it to one side. I knew that, had there been anything amiss, I’d have had a recall phone call early on. But Dennis kind of collapsed in a heap and said that had been one of the longest two hours in his life (I was doing my online writing course so the letter was left for me to find when I finished). I’ve tried to rationalise it with him but, ever the pessimist, he gets eaten up with worry. I was still surprised and feel terribly sad that I cause him this grief. Then he went and spoilt it by saying he has no faith in mammograms after they failed to show anything wrong in the first place. Yes, thanks, I need reminding of that. I’m holding onto Dr S, the last oncologist, saying it’s ‘most unlikely’ I’ll develop breast cancer in my other breast. Erm, my mum had two different kinds of breast cancer in different breasts, 20 years apart. Oh, let’s tuck it away in its box in my head. I got the all-clear. No more thinking.

But actually, thinking about it, why aren’t I examining my healthy breast while I know it’s healthy? Have I learnt no lesson? There’s no point declaring publicly I will do it because I won’t. It will remain the cursory swipe, gentle probe in the shower. NOT GOOD ENOUGH, JAN. 

Second, more good news. I saw my first REAL live, breathing consultant yesterday. It got off to a bad start. The walk (waddle? plod?) from the car park, through the best part of a whole hospital to Rheumatology Outpatients left me panting for breath (oh the shame of it) and I was summoned by a very abrupt nurse to be weighed (in a chair!) and have my blood pressure taken. My blood pressure shocked me since I’ve always tended towards the low end but, as I don’t understand what the figures mean and the doctor didn’t mention it, I’ll assume it was adversely affected by the effort expended finding the damn place. But, horror upon horrors, I heard my weight read out in kilos and I’ve never heard anything above the 40s before. THAT was one hell of a shock till it was converted to stones and then it sounded right, a bit more than I’d like but still within the healthy range.

Eventually I saw Dr W, the same rheumatologist who gave me a phone consultation. I came away a happyish bunny. Happy in that I’d been seen, everything that concerned me had been explained and put into context and that I have a good range of movement and there are good signs that, with exercise and time, I may well revert to how I was. Of course, I’ll be 4 years older but we can’t have everything. I have a baker’s cyst behind one knee, I have bursitis, I have osteoarthritis, but no more than she would expect in a woman of my age. I was happy too because we agreed that, despite all the pain, I can’t point to any single joint that might benefit from a steroid injection and also she agreed with me that a general slow-release steroid injection wouldn’t be a good idea right now. It would affect my immunity (I’m officially Clinically Extremely Vulnerable, with all the benefits that brings!) but it also would disguise my symptoms IF, by any remote chance, I am seen by the frailty clinic or Neurology, So, I’m happy with that, happy to be discharged and happy to plonk myself down in the socially distanced waiting room and fill in a form for her professional appraisal - what next?? No wonder she was so nice lol. I just wish I could hold a pen and write neatly again.

It helped too that she suggested I might be CEV because I was registered with Rheumatology and everyone automatically is considered CEV even when they aren’t. I’d received my email the night before and, to my surprise, I felt upset and a bit anxious. Maybe because I didn’t know what it is that makes me more vulnerable than the next person. 

Basically it just said keep to the general rules, so you can do x,y and z, but don’t because you’re CEV. I just love the communication skills of this administration. The best thing was that it wasn’t signed so I didn’t get infuriated by Matt signing a letter to me. I choose my friends much more carefully.

Meantime, I’m trying my best with my exercises (Dr W says I have “excellent thighs”). I eventually found my physio programme in Junk 4 days later and it looks so easy. It bloody isn’t. My thighs are on fire. That means the following day, I can’t do any of them. More about the hilarity of exercising on the toilet seat and doing The Bridge on my bed, cos I can’t get up again if I manage to get to the floor. All I can say is, she better be right and, with exercise and time, I’ll get better. Right now, I can’t find any muscle beyond my head that doesn't hurt in some way. It doesn't help to know this is “unusual”.

I’m whingeing again, aren’t I? Maybe I should talk about the utterly compelling American election, which I’m beginning to understand and beginning to appreciate the joys of being British as a result. Brexit next. And no mention of Covid-19. Yet.

203. Whatever next??

 I think it’s pretty amazing how this pandemic has revealed how we patients were completely misusing our NHS. We actually had the gall to expect to be seen and listened to by medical practitioners; for them to pick up on our cues and deduce far more than we knew from our questions - and then look for a solution. Maybe a treatment, maybe a cure - who knows?

It seems that we needn’t have wasted their time. All it needs is a few questions over the phone and it’s sorted: diagnosis, plan for a way forward and then you get on with it.

Maybe I’m being cynical. Maybe the way forward is via technology, Maybe people can be plucked and placed into neat little diagnoses groups and all respond to a general kind of treatment.  A couple of months ago, it was remote Occupational Therapy. I faithfully do my hand and finger exercises daily but, at this rate, I’ll be in my 90s before I can say the recommended regime has helped me. I confess, I do have the ability to open a bottle now but there’s not much else I can yet achieve. I’ll let you know tomorrow after I try out a chicken stir-fry. Can I wield a knife and dice strips of chicken breast? Will it be edible??

Meantime, today I had a telephone physiotherapy appointment. T was a lovely man, with a delightful Irish accent (always my favourite) which was quite hard to grasp till I got into his rhythm. He asked his questions and has been able to come up with an exercise programme (yes, another) and is confident my knees will recover. Unfortunately - and this is what really pisses me off - he couldn’t veer from his brief (knee, but he extended it to two knees, thank god). He knew as well as I do that my walking won’t get much better till my feet are dealt with but he wasn’t able to help with them, let alone my arm that hasn’t healed since my fall in the summer. So a bit of me was pleased that someone was helping me, another bit was frustrated that he couldn’t see me and help the whole body, another bit was full of admiration that they can work from a distance (it must be hard for them) but really I felt quite tearful, that I may never get a holistic look at what’s wrong, just departmental decisions that aren’t co-ordinated. 

Of course, I may have felt tearful as I resorted to buying a “lazy bike’, listed in Amazon as mobility for the elderly. That’s it. My fate is sealed.

Next, a walking frame!

Today it was announced we move into Tier 3 on Monday. Why not today? The figures are soaring and we should have moved two weeks ago. I know I’m being naive but I don’t see how the local authorities (I’ve given up on the government) could drag their feet to protect business before lives. I understand the dire situation for small businesses and for unemployment but surely life comes first.

I already knew the local hospitals were filled to capacity and are cancelling most surgery (you were so lucky with the timing, Maureen) and Chapel Allerton hospital, where I’m due to meet a rheumatologist next week, has closed all its surgical departments. So my big question is, will Chapel Allerton continue outpatient clinics? It’s not an emergency but I’ve waited so long for this and I’m never going to get to see a neurologist am I?? This is essential in understanding what is wrong and which bits can be repaired.

I’m so tired of being a walking, talking side effect. I want to be me again. 

Ok, no more pity-partying, I hope so anyway.  

202. Something to celebrate

I saw this at noon today. I shouldn’t have - I should have been doing a BC Haven Online Zoomy thing but, despite Dennis asking me very intently if I had anything online booked for today, I blithely said no. Ooops. Anyway, my good news: 

This has become known as Microgate this month. It’s a monthly competition. A prompt is provided and the task is to create a stand-alone story of exactly 100 words. I haven’t entered many as they were introduced when I was ‘ill’ but the photograph this time caught my eye and I created A Dead Man’s Thesaurus (should have been Dictionary but, hey, poetic licence). All the shortlisted stories were incredibly depressing, mine included as you could guess from the title, but the photo was bleak, a b/w image of a filthy sort of porthole, set in thick concrete, with some kids walking by on the other side and some astronomic markings, both of which I ignored. I found the congratulatory email in Junk at 6.30 tonight!

Anyway, it’s a bit of a poisoned chalice. First, someone was found to be cheating - they’d emailed all their contacts with their title and asked them to vote, so the competition was going to be cancelled but was rescued by Twitter. Result, the offending story was removed. Sadly, it was the one I voted for. The hilarious thing is, when it was announced in horror that someone had cheated, I immediately felt guilty. What had I done? I can feel guilty just passing a policeman! Then it got better. The voting is public and there’s a list of the titles, you click on your choice; sorted. Only this month, every time you refreshed the page, you could vote again. You could also vote on multiple devices if you wanted so this made a mockery of the votes. I emailed them to alert them to the problem and it was fixed to some extent. Maybe I won for being the swotty telltale lol.

I’m in the early stages of a writing course I paid for almost a year ago! It was due to start this Spring but... so we swapped 3 days of 4 hours in a café in Harrogate for 6 x 2 hours over Zoom. It started with the very basics, which I’m comfortable with and homework was to write 1000-1500 words, a story inspired by something in the paper. I found an incredibly beautiful photograph in the i, promoting a photography book, and was inspired to write... yes, more death (or almost). I think I’m terrified of having to write romance. I was scarred for life at school. We’d been given a homework to write a short romantic story. I missed the lesson for some reason and when I came back, the teacher read the best one to the class - it was straight from a teenage magazine I read. 17? I can’t remember. I do remember the girl who wrote it because she indirectly caused my humiliation when, having adapted a story from Woman’s Own, I got taken aside by Mrs Friend and castigated for cheating. I could hardly say “But X took her story from 17” could I? There you are Lesley, another memory. I can even picture the classroom. Mrs Friend was very good at the icy, cutting down to size bit. I modelled myself a bit on her!

Things are looking up on the Let’s Check Janet front. A breast care nurse rang me and she’s ringing in 3 weeks to see what progress has been made and chase things up if I don’t have appointments. I am seeing a real, living, breathing rheumatologist on 5th. If they discharge me then, at least they will have seen my symptoms rather than diagnosing over the phone. I’ve also (cause for hilarity) got a phone Physio assessment, after which an exercise programme is planned and you learn what to do from YouTube videos. The world of medicine is changing!! Apparently, there’s another oncology letter from Dr S to arrive, with several things to be actioned by my GP. Well, good luck there, considering it took 6 weeks to get a simple blood test. 

Tomorrow I’m doing part 1 of a short online course run by the Haven on Working Through Change and Transition. I know the answer is more exercise but, at this rate, it will be exercise 9 - 5! I’m looking forward to it though, certainly the meeting up with others in the same boat, even if it is through Zoom. I’m getting quite adept but I still can’t manage to achieve the tropical background effect. 

To complete all I can remember, I’ve posted on the BreastCancerNow forum for recommendations for shampoo. My hair is getting thinner by the day and my temples are receding like Dad’s. HELP!!!

OMG I wouldn’t usually nick a photo but this is spot on,

except of course my hair is white and almost transparent