211. May I be ‘classic’ for a change?

Tuesday’s appointment began promisingly. We arrived in plenty of time and I’d been squeezed in before Mr Gout’s first appointment - I could see that on both check-in lists. Dennis had to sit outside and the eye clinic, which I’ve only ever seen heaving with people, was virtually empty. Seats were 2 metres apart and there was a one-way system. I was quizzed about my medical-quality mask - was it my own mask? had I worn it before? Was it fresh on today (trick question, considering the answer to the first two. Honestly, who would share a mask??). Then I was allowed to sit and stew till I was called for at 9.25 on the dot. The poor man in the queue behind me wasn’t allowed in - he was too early. They mean business here. Although my answers to the raft of COVID-questions were all No, of course I developed a nervous cough. I feared I might be ejected. If only. 

A rotund nurse checked my eyes using what looked rather like a Venetian mask. She wiped it down with antiseptic and missed nothing except the handle - that should have been a warning. Then she took me to another area and I had a prime seat for the TV. I watched a full hour documentary about bears, very interesting but not enough for me to fail to notice the steady turnover of patients while I sat put. When it got to High Society, I began to get more antsy and, with only 30 of my 120 minutes of parking left, I went off to find the nurse to ask if there was a delay. I knew Den’s mind would be working overtime after all this time. The explanation was that Mr Gout had had to deal with a couple of complex cases and was running late but I noticed the nurse scurrying through carrying a folder of notes. She hadn’t passed them on!!

I went in soon after that. The examination was unspectacular, though I did have both eyes anaesthetised so I’ve no idea what he did. I rolled them in every direction possible (and more) and was informed that my eyelid was “unusual” in that he could detect no apparent cause for the discolouration (still spreading) or the swelling. He didn’t mention the lumps but he prodded them a bit. I wanted him to say these are the classic symptoms of X or Y, not tell me they’re unusual. I was unusual in September 2018. I had a skin infiltration (use the right language) of effing cancer. Give me ‘classic’ any day.

The upshot is that he wants an MRI so he can have a better idea of what’s going on behind that socket. What? I went about my eyelid, not my eye. I’m to go back in 5 weeks and, he assures me that, if my eyelid doesn’t go back to normal, they can easily “give it a lift”. I didn’t ask if they do 2 for 1 but imagine having one tight eyelid and the other showing the wear of 69 years! So, no further along, everything still hinging (should that have an e? My iPad won’t allow it) on an ultrasound and an MRI. 

I rang the breast care nurses to tell them I’d still not received dates for the tests and they rang back to tell me they are on the system - Sunday January 3rd at 2.30. About half an hour later, the post arrived with my appointment letter. Carol is driving us there and, if she doesn’t assume that involves fetching us back, it’ll be taxi or goddaughter (though I’m using her on the 11th when I go for my zometa infusion. Neither of us feels happy about a cab in Tier 3 but needs must...

So, where does that leave us? At the back of my mind, all sorts of fears try to surge up and get pushed down but that means there are surges of adrenaline I could do without. Dennis is just in a mire of misery but I swear if he doesn’t cough up a Christmas card tomorrow, that will be hard to forgive. Otherwise it’s wait till 8th January for the results and, I hate to say it, pray. I know we don’t push the boat out at Christmas, but this is not really what I wanted.

BUT I still have it in me to say: 

210. Waiting, still waiting

I don’t know how many times I have written reassuring responses, oozing with empathy, to women on the Breast Cancer Now forums, new to Cancerworld and feeling desperate as they wait for tests and results. One of the Community Champions, Shi, always writes that no one has cancer until they are told by their oncologist that they have cancer. I usually wade in with reassurances that the vast majority of lumps referred to breast clinics turn out to be benign and that, with the worst case scenario of a cancer diagnosis, what follows is all doable. And that’s true. But no words can shift that weight of fear and those sneaky what ifs that catch you at the most inconvenient moments.

My first appointment is with a Mr Gout (?) in ophthalmology at St James’s on Tuesday. This was organised over the phone so I have no letter and, more important, no map. I know it’s Chancellor Wing. I know it’s Ground Floor (phew). I’ve been there before to get zapped (the other eye) but I can’t remember. So that means getting up even earlier, to get through rush hour/school run traffic, find a parking space and then slowly walk to the right building. I’ve a feeling it’s before A&E but that doesn’t help unless we can’t find parking nearby.

Dennis insists on coming with me but he’s not proving a tower of strength right now. He’s permanently locked into worry/fear mode in all things health-related now. I have had a bit of a cold for the last couple of days - almost incessant sneezing but not much else - you’d think I’d done it on purpose (I still don’t get how I caught it when I’ve been socially distanced at all times). Now of course, if it hasn’t cleared up by tomorrow, I may well be banned from my appointment. They ring the day before and take you through a checklist and I may fail, though I have no COVID-19 symptoms. Wouldn’t that be dandy?? So I’m eating vitamin C tablets like sweeties as that has only once failed to halt a cold in its tracks. Fingers crossed.

So... the fence. Or fencing.

First, a digger was at work at the end of the garden, with a pretty scary blade (?) that swung perilously close to our property at times. But we have the 5 metre buffer so we should be safe. Dennis commented that they might as well come into the garden.... Next day, I noticed this: 

They’ve clonked into the back fence with such force that they’ve knocked all the upright posts and the first three panels sideways. Then one post has resisted so the panel beyond that has broken. You can’t see much of the damage here but there are slats of wood broken away - a sorry sight. I contacted the site manager. No problem. Send him photos and he’ll consult Head Office. Three weeks on and we’ve not even had an acknowledgement. 

The weeds are there because the patio has been left to overgrown. The ground beneath seems to be flooded with water from the site and the stone slabs were lifting under the pressure. Let it go wild since Den doesn’t have the time and I don’t have the strength. Yes, we do need a gardener. I digress. We did meet with the site manager over another issue. This happened next: 

It may be hard to work out but it beggars belief. Miller Homes has ignored the 5m buffer and erected a fence to plot 27 that adjoins our fence. Just a few feet but strange nonetheless. We are assured that the buffer exists, only it’s being incorporated into the garden of no 27. Not 25 and 26 - they are mere semis - but 27 and also plot 30(?) the house we can reach over and touch. Ok I’m exaggerating but it looks like it:

That’s no 30 (?) just over our hedge. It’s their garage - the house is just a blank wall fr us to gaze at, with 2 windows thankfully just out of our line of vision. The builder did turn and wave! It’s a large detached property with a tiny garden. UNTIL the 5m buffer is conveniently absorbed into their garden, as is planned. Actually, that part of the plan would suit me as I think it’s a security issue to have a strip of landscaped land between the two properties, open for kids to play in or young people to gather in (not much else to do in Bramhope!) BUT I would want to be assured that the same principles are being applied all round the new development, not, as I suspect, just around our road. I bet you anything they will respect the landscaped 5 meters buffer when they build along the back of Creskeld Lane (aka Millionaires’ Row). Grrr.

So I insisted on meeting the site manager with his plan to compare to the plan I have downloaded from the Planning Department, We met. Our plans did not match, even though mine is the latest agreed Landscaping plan. He pointed out that the owners of the new properties were aware that their gardens included the 5m buffer but couldn't say whether the same rules will apply to the ‘posh’ part of Bramhope. Fair enough, they’ve not been built yet but either we are living in a Conservation Area or we are not. Then it got better. He told me that Miller Homes intends to ‘gift’ the residents of High Ridge Way the proposed buffer land and we can extend our fences so we acquire an addition 5m of land. What about the bit already within the fences of no 27? Oh, that’s not a problem. They already know it’s buffer land and we can take it from them. So, by that reasoning, we end up having to pay the costs of moving their fencing to leave them with a minuscule garden AND we lose neighbourly goodwill, just to acquire a 5m stretch of land we don’t really want, we can’t build on and which would leave us with an island of trees!

Anyway, Mr Planning Department is doing a site visit ‘over the festive period’ (one day now, as far as I can tell from our ultra-clear government guidance) thanks to my pals Billy and Barry (councillors) so watch this space. Or don't - probably wiser!

I know I’ve said it before, but if you have followed this and even tried to get your head round it, you must be a true friend! Apologies but it’s a good distraction for me.

209. Ask a simple question...

Sometimes, the ripple effect can feel like a tidal wave. The other day, I had a brainwave (ouch!): the single swollen gland in my neck (new) might be related to the single swollen eyelid (3 months?) which might be related to the deficient lymph system I now have (2 years+). So I set out to find out if that could be the case.

First I must emphasise that I wasn't worried about any aspect of this. I already, I hope, have a GP referral to ophthalmology regarding the cholesterol lumps in my eyelid and we might as well throw in the swelling at the same time. I spent the first half of my life plagued by throat infections so swollen glands are nothing new - though usually I had them on both sides. Now I have a single mini-mump which looks a bit weird.

Question: could the removal of all my lymph nodes under my left arm make my left neck and everything up from there more vulnerable to inflammation or infection? An academic question, not a worry.

Step 1, since I was determined to avoid Dr Google, was a nurse on the Breast Cancer Now Helpline. They are wonderful - very reassuring and knowledgeable. Her advice was that it would be better to ask my breast care nurse, as they would have access to my notes.

Step 2 was a breast care nurse. I rang the number about 11 on Thursday. I got a call-back at 2pm. She pondered a bit and then said she thought it would be better if I was seen. She trotted off to consult on whether I should be seen by breast care or oncology and was advised oncology. I told her I have an appointment in less than a month (prior to my next treatment - ugh) but she thought maybe it would be better to keep the two separate. By 3pm, I had an appointment with oncology at the breast clinic next day. A cancellation. Still no alarm bells.

This coincided with a minor conflagration with Miller Homes, but that’s another story.

Step 3 was finding a way to tell Dennis without him assuming I’m about to face Death. That failed miserably and, try as I have, I can’t bring him out of Severe Anxiety Mode now. Damage done.

Step 4 was convincing him that our Sainsbury’s delivery, which clashed with my appointment, meant he couldn’t come with me. Yes, I could manage on my own.

Of course, Dennis’s reaction undermined my whole calm approach. It genuinely hadn’t occurred to me that any of this could be connected to cancer. Not till the breast care nurse said they thought I needed to be seen by oncology and I wondered how on earth I could explain it safely to D. Even then, I brushed it aside, tucked it neatly back in its box and continued with my All Is Well approach. Then I had to reason with all D’s Yes Buts and found myself reacting physically (no more constipation!) if not fretting mentally.

Yesterday, I had an appointment. I expected a bit of prodding and a blood test. What I didn't expect was what is to follow. Don’t get me wrong. I think it’s an amazingly thorough approach which I should be grateful for but right now I’m cross and a bit upset. It feels like cracking a boiled egg with a sledgehammer. 

1. THREE phlebotomists were required to extract two measly phials of blood. Amazingly, I don’t even have a bruise, only four tiny indications of needle attacks. Good job I’m not scared of needles.

2. I have to wait for an appointment for an ultrasound of my neck. “How long have you had this node?” It was almost accusing so I felt like replying “All my life” but I meekly said “About 5 days.”

3. Dr U (yes, my lovely Dr U, dressed in scrubs (!!) and vanishing for 5 minutes because of “a problem upstairs.” I told him I remembered that only too well) ringing straight through to the Eye Clinic to get me seen immediately. They didn't answer, so he dashed off a letter there and then, requesting an expedited appointment. WHY?

4. I have to wait for an appointment for an MRI of the occipital orbit (eye?). That I have googled and it takes 30 minutes and uses contrast dye so it will require a dose of the blessed lorazepam. I don’t know how I’ll get there as I can’t drive with lorazepam, I can’t ask friends (social distancing and no bubbles, even though I’ve been in such isolation, apart from this hospital visit, so I must be a safe bet) and I am reluctant to use the taxi service. In fact Matt said not to use public transport in his CEV letter. That leaves hospital transport which could mean staying all day waiting for a lift home - and isn’t that public transport only with more vigilant hygiene?

Of course I didn’t ask any questions, apart from one when he said something that sounded really scary but wasn’t. Dr U did say that, with my level of risk, everything must be followed up but I didn’t think to ask if he was concerned. I want to consider this as completely routine. I just wish my intestines believed the same. So no, I’m not worrying about metastasis but I do know it’s still a risk. I am reassured by the thoroughness of the response but I’m not grateful for the protracted waiting for the all-clear, which will take me well past Christmas. It takes me back to 2018 as I sat and wallowed in self-pity and fear as my first chemo loomed on Christmas Eve. I’m not being callous about myself - I was wallowing and there was a hefty dose of self-pity there - BUT the fear was real and justified for me and I feel sad about that.

So, watch this space... and the story of the 5 metre Buffer Zone ;)

PS. I had to chuckle. Dr U was trying to work out why I looked so different from when he last saw me (17 months ago - I got handed over to Dr D, much to my disgust). I pointed out I was carrying close to three extra stones in weight but he hesitated and then said no, it was that he’d never seen me with so much hair. Dr Tactful? Anyway, he said that I was looking very well. So, no worries :) 

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 

201. 42H??!!!!

 I’m reading Dawn French’s autobiography for Book Group next week and have just read that her bra measurement is 42H. Having lived in the non-committal (bra or no bra?) world of the 34A for decades, I didn’t know they went up to that size. I guess I never even thought about it. 

So why is this relevant? On Wednesday I had an appointment with a lovely member of St James’s breast care team who measured me for a new bra. 36D. In my head, I just scoffed. My first post-mastectomy measuring had been at the specialist Nicola Jane shop and the assistant measured me as 32 C or something. When I questioned the 32 (I hadn’t got as far as the C), she assured me it was more like 30 but it was academic as their bras started at 34 so let’s just see... I came away with what I still call my fortress bra because that’s what it feels like (34C) and I have never been able to wear it or any other more functional bra I’ve bought for more than an hour without having to yank it down to avoid my sore ribs and yank it off at home so I could breathe.

Anyway, like Dawn French, I’m digressing. The nurse took out a 36D bra (functional, flesh-coloured knitted cotton with seams across the front (!!?!) and we put it on. These nurses do like to help. Being a patient seems to deprive you of your ability to perform simple tasks for yourself so WE put it on. I felt quite smug when I looked down at the solitary boob and noticed all the crinkling. “It’s too big,” I said triumphantly. “Hold on a minute,” and she rearranged my boob, yanking a handful of what I can only assume is my new fat, and then pronounced “There you are. Perfect.” Perfect it was but the other half lay like a popped balloon, a shell of broken promise. In went a gigantic prosthesis: a little too large at the side. In went another: not enough in the top. In went a third: perfect match.

Not sure why they look so sad, except Olive Oyl

Once I was Olive Oyl, now I’m more Betty Boop!

Cartoons by AleXsandro Palombo

I almost skipped out like a happy bunny, clutching my indiscreet purple plastic carrier containing discreet box, old (expensive), defunct bra and a brochure which gives me 20% off my first purchase. I had to walk back through the clinic where we’d sat miserably, waiting for details of my chemotherapy regime to be explained, and where I’ve sat on tenterhooks awaiting the dire mammogram, but I barely noticed. I just knew I was displaying matching boobs for once. Poor Dennis, who insists on accompanying me to every appointment I have but is always consigned to the corridor if they let him inside the hospital, was leaning against a wall and yet again we got lost trying to find our way out. It just takes one wrong door and you embark on yet another adventure exploring the dark depths and back alleyways of St James’s. 

We popped into Maggie’s where Dennis again went into a relaxed trance just by sitting on a sofa, while I poured my heart out to a different counsellor who suggested I might benefit from seeing a psychologist. I know my head is a bit of a mess but a psych and a psych? I can’t see that would do any good. So do I stick with the devil I know or drop her for a short stint with someone who truly understands Cancerworld?

After that, it was meant to be straight home but i) I couldn’t find my keys - had they fallen out of my jeans pocket at the Breast Clinic? I emptied my handbag twice, which is no mean feat considering how I’m prepared for every eventuality that never comes, but they weren’t there. The counsellor was just about to ring the clinic when I found them in my jacket pocket. My only excuse is that I thought I as wearing the one with no pockets so I didn’t bother patting myself down. Embarrassed apologies, lots of reassurance and we left, only for me to realise that ii) I didn’t have my velvet scarf. I’d looped it round the strap of my handbag because it was warmer than I expected but it was no longer flapping. Back into Maggie’s, ignoring the subtle eye-rolling I’m getting used to from Dennis, but it wasn’t there. Abandon it and head home or retrace our steps, which wouldn’t be easy given how we’d got so lost? I decided to check the route I knew we’d taken early on and, at stage two of my mental map, there it was, draped over the handrail of some steps. A heartfelt THANK YOU to some kind passerby, probably a member of staff more than used to dozy-minded patients who can’t remember what they had for breakfast as they work through a mental fog.

Thinking of mental fog, I woke this morning and it was dark, which I found surprising. I reached for my phone: 05.12. I knew the clocks had changed so I put on my glasses and looked at my watch: almost quarter past six. I know it’s ‘Spring forward, Fall back’ but I must have spent 10 minutes waking myself up unnecessarily, trying to work out if the new and exact time was 5 or 6. I gave up in the end. Wasn’t it enough that it was still dark?

Now what else has happened? I got my cholesterol result (7.7!! The consequence of the fatten-her-up diet during my treatment. Ok, and probably the chocolate) so dietary changes are again required if my eye is to revert to normal, let alone if a stroke or heart attack are to be avoided. Not to mention vascular dementia. Bloody hell, once you get on the Health Train, there’s no getting off. Anyway, I have to try statins again. They didn’t like me last time (about 3 years ago, when my level was highish but mainly good cholesterol). The doctor checked my reason for not taking them and it was muscle pain so I thought Sod it, I probably won’t even notice it this time. Oh, and I have a real, physical, fact to face appointment with Rheumatology. I have no idea why but Dr U (favoured oncologist) thought it important. 

Things are beginning to move forward just as Leeds hovers on the brink of Tier 3 measures and no hospital appointments again. Aaarrgh.

200. I deserve a medal?

Today on the Breast Cancer Now Forum was a post thanking me and one of the community champions for our support during this person’s crisis.  She referred to us an angels and said we deserve a medal. Whilst experiencing a little smirk of satisfaction, I thought about the irony of my reality compared to what she probably assumes. I try to be honest and I told her how I needed to be sedated to sit through a chemo session but I don't think that’s what she wanted to read. She needed us to be heroes. Well, in the interests of honesty, this was me on Wednesday:

This was me Thursday morning, can I can’t I?: 

But this was me yesterday afternoon: 

Yes, I was a big girl and I had my mammogram. Thanks to a mask, the radiographer could not see my contorted face as she did the side x-ray and I continue to be grateful for being monoboobed. Only two xrays! When she came out and said they were both good (so no extra xrays) my heart soared, only to be brought back down to earth by Dennis muttering “So that’s just another three weeks of worry.”  I wish I could laugh but it makes me feel a bit guilty that I cause him this stress. I’ve tried telling him Dr S said that I was unlikely to get cancer in my other breast (let’s face it, that chemo would have killed anything dormant) but it doesn’t stop him worrying.

So here’s me advising someone on the forum to be kinder to herself and stop calling herself a wimp when I seem incapable of offering myself the slightest compassion. Must try harder.

Tuesday was my Second Anniversary. The day I had my cancer removed and came home in a stupor, attached to a bottle of raspberry smoothie. I don’t know what I expected of myself but, having identified it as the one positive date I can clearly identify, I felt incredibly low. Back to the ‘I really didn't expect to be like this two years later’ train of thought. I was lifted by the delivery of a lovely bunch of roses with irises from Trina but my head remained a mess. So, since we got lost yet again between Chancellor Wing and the car park, we stopped off at Maggie’s. I mentioned once before that we popped into the Maggie’s Centre briefly a year ago, not long after it opened. I can’t describe what makes the place so special but Dennis left me to talk out my frustrations with a former oncology nurse and, an hour later, she found him zoned out on a sofa. As he said, the atmosphere is so relaxing, it takes the worry away. Maybe we should move in?

199. Oh well...

 

I just thought I’d start with something cheerful (not) to give you an idea of how we are being encroached on. No excuse for the patio apart from 1. It’s useless as a patio as it is waterlogged from underneath, thanks to the changed water courses on the construction site. Water just bubbles up and covers several slabs 2. I can’t grasp a weed to pull it up so I’ve done nothing 3. Dennis has his work cut out mowing the lawn and breaking lawnmowers 4. We’ve lost heart - and I think many people would. This is how it was when my cancer story began: 

So, back to my cancer story. Yesterday I waited till 2pm for my 10.30 telephone consultation. Despite being added to Dr U’s list, I had yet another unfamiliar oncologist, a Dr S, who was willing to answer all my questions. It seems some of the referrals have been made (the various departments communicate by letter - can you believe it??) but some have not, being left as draft letters in my file. So she needed to get back to Dr U to find out if this was deliberate or not. I suspect not. She did say she would email each of the departments to back up the letters but she contradicted Dr U who believed Neurology wasn’t a good idea. She thinks a referral to Neurology is essential. I pointed out that Dr D referred me in December, the same time as she referred me for an MRI in preparation for my appointment with a neurologist. When this new doctor asked how that had gone, I was able to say I never heard a peep from them. So, if she’s putting any hope in a referral to Neurology, I’m not.

If I sound down-hearted, it’s because I am. Having asked all my questions, the summary is that, having had side effects x,y and z for so long, I should regard the side effects as ‘probably permanent’ as they should have gone by now. This includes: 

1. One numb arm from the elbow upwards and a tendency for an unreachable itch... for the duration.

2. Two very tender breast muscles above and below my scar, on two ribs, caused by radiotherapy but, she says, also likely to be the consequence of major surgery (so why didn't I get the pain till 10 months after surgery? I didn’t bother asking) so...for the duration.

3. Two very painful hands requiring daily exercise... for the duration.

4. Two very painful feet

5. Two painful knees. 4 & 5 will depend on how I get on with a physio (if I ever get to see one. Telephone diagnoses seem rather harder when it comes to physiotherapy)

6. Loss of muscle strength on the right side, with dropped eyebrow, droopy eyelid (looking quite pert while the other one has its own un-cancer-related problem), reduced internal muscle action and one incredibly droopy upper lip when I am tired...depends on Neurology. For that, read for the duration.

7. Tingling fingers, toes and lips...for the duration. 

8. I forgot to mention difficulties swallowing and dry mouth/throat so I’ve no idea about that.

She told me I am one of a very few unfortunate women to be so adversely affected. Like that was going to cheer me up. Hey guys, I’m rare, if not unique!

Dennis and I had a long conversation about where we go from here. I do wish I could cry with frustration as I don’t seem to accept her diagnosis. NO-ONE HAS SEEN ME IN PERSON. I won’t accept that a life of frailty lies ahead as a result of effing cancer treatment. It’s not even the cancer. It’s the treatments! I can’t imagine not swanning about sporting the latest Jigsaw but I’d have to drop at least 2 stone to revert to that, be able to trust my feet and knees to support me, be sure I wasn't going to trip over my own feet while walking and generally feel good about myself.  Am I going to have a future of elasticated waists, flat Hotter shoes (with orthotics of course) and Damart outer wear?

Mammogram on the 15th. No wriggling out of that but, ON THE BRIGHT SIDE,  she did say I was ‘very unlikely’ to get a cancer in that breast. I’m not even going to think of the unasked questions.

198. Hee-aad, shoulders, knees and toes, knees and what?

I have every good intention of updating this, then I think things are too miserable or too complicated or mañana. I’m good at mañana :)

Today was an Otley day, both of us booked in for our flu jabs, so I also booked my follow-up at Specsavers. The Medical Practice website said be prepared for a wait of up to 20 minutes. We were the only ones - straight in and out, though poor Dennis got caught on the hop and found himself having the pneumonia jab (which he’s always declined - he only did the flu for me when I was having chemo, he doesn’t believe in medical matters for himself). He now has two stiff shoulders. I told him to press hard to reduce bruising but...deaf ears.

                                 

It seems I have selected two pairs of blue glasses. I went for green, a kind of teal (possibly my favourite colour). I had little interest in trying on glasses on the last visit and just plumped for a smaller and a larger design. One is a distinct blue to me which, once my faulty eyelid is sorted out, should enhance my blue eyes before they fade completely; the other is a grey tortoiseshell but with subtle splashes of blue I hadn’t noticed. What’s happening to me? I’d have spent hours, if not several visits, selecting the most flattering. Now, all I care about is will they stay on and can I read better? The answers are yes and no. It turns out the blurred eyesight is my lazy eyelids, not a fault of my sight. 

I am making steady progress with the MySarah exercises. I’m into Session 3, which last two weeks. Hold the holds for longer and increase the repetitions from 5 to 10. That takes well-nigh an hour, after which I have to do my leg and heel exercises and I’m worn out. My hands still hurt but I have to admit that they take far less time to unlock, to achieve mobility and for the pain to go away. The exercises have to be worth it. I got a call giving me an appointment at Chapel Allerton Hospital Occupational Therapy, which was a bit of a surprise but I felt chuffed because it meant at least somebody was going to physically SEE me. Then I got a call the day before from the team leader who’d done my initial phone assessment and got me onto MySarah. She sounded quite indignant that I’d accepted a hospital appointment when she’d suggested a phone reassessment. Since it’s her team, she should know what’s going on. Result, no physical appointment, a phone assessment and another discharge. Ok, that’s hands sorted then. By phone.

I confess it was a relief - I‘d have had to leave here at 7.45 to get there on time. The phone assessment was somewhat half-hearted. She was thwarted by the fact that Dennis does all the housework and neither of us is bothered for proper cooking! I get the impression most OT is based on getting one to use the vacuum cleaner, manage a mop, chop vegetables and such-like. Don’t think I don’t fully appreciate that I am spoilt...but not quite a brat?

So that just leaves tomorrow’s oncology consultation. I need to get together my questions (including has the referral to physio been made because the OT says it’s still marked DRAFT - honest, this is the story of my health). And as soon as I wrote ‘that just leaves...’ my stomach lurched because I have a letter with a date and time for my mammogram which those of you who are familiar with me know is anathema to me. Close to my idea of hell. I am going to go back a year and read my blog to see if I can draw any comfort from the experience but I’m sceptical.

I have some great photos of the building site as the houses get roofs on. I’ll save them and just leave you with the view from my bed the other day. Should I wave?

197. Goal #1 Achieved

It may not be much in the grand scheme of things (whatever that is) but I have achieved my first goal in the MySarah project aimed at people with rheumatoid arthritis (which I don't have but I have to do the exercises). I have opened my own bottle of water using my hands. It was bloody painful but it means I have some grip again and I have some strength. Big pat on the back (actually that’s one of the hand exercises tho I don't get why). Next goal is to do it pain-free but as I’ve only just finished week 2 out of 12, I guess it’s early days.

I cannot convey the sheer delight of using therapy putty.

I could play with it for hours. However, you can’t take your mind off it for a second. Touch something and there’s a green mess that seems impossible to remove. I rested my hand on the tv handset and had 5 bright green keys. You can’t pick it off!! Thanks to Google, I learnt that a dab of hand sanitiser will remove it - a little miracle to unscientific me. The other thing you cant do is touch another batch of putty. Do that and you are dealing with countess strings of putty that get so thin they are almost invisible - but the two pieces are still attached. It’s like it has a mind of its own. So much for a simple way to reduce the time on the exercises - I thought if I got one lot for each hand, I’d have things sorted. Forget it. Anyone want a pot of green therapy putty??

Yesterday, it was back to the pool, which we had all to ourselves so I was able to focus on water walking. It sounds so easy and it looks so easy but when you’ve no muscle strength, it’s quite hard. I was actually quite proud I could walk or wobble a full length, ending right on tiptoe/points, but I’ve watched a couple of videos about how to do it this morning and, of course, I was doing it all wrong. Better luck Tuesday. I’m building up the number of lengths (swimming or walking) but I can’t do more than two without collapsing with exhaustion. I also counted the number of strokes I did in a length. I used to be able to cover the full length in 6/7 breast strokes. Now it’s 25. I think I’ve a long way to go!

On the down side, we’re creeping closer to lockdown in Leeds. They’ve done very well in my opinion, the Council I mean, keeping track of where precisely it is, but the number of cases is increasing at a frightening rate and I can see it will be back to isolation and no trips to Cookridge Hall. No more entertaining in the garden, as we did yesterday. I might not even get back to Otley for my new glasses or our flu jabs (week after next). It’s just wait and see. I just don't get why everyone can’t take a long-term view, can’t see beyond the implications for themselves and basically why many people don’t seem to grasp the notion of transmission. Result - Leeds’ figures are way too high for comfort.

196. Happy Anniversary?

A few weeks back, a woman asked on one of the Breast Cancer Now forums when was she entitled to celebrate her anniversary - did she date it from her mastectomy, or the end of chemo, or the end of radiotherapy? When could she say she was free of breast cancer? I kind of got the impression she was desperate to find something positive to hold onto. I remember a few of the comments I made in my reply 

• I was told (so Dennis says) that I was cancer-free by my breast surgeon when he visited me after surgery. It had all been removed by the surgery and what followed would be to make sure it didn’t come back. That was October 2018.
• I was told by T, my adjuvant oncology nurse, at our first appointment that my bone scan had confirmed that I was officially No Evidence of Disease ie. cancer-free. This would have been January 2019.
• That when I finished radiotherapy, I didn't have the slightest inclination to Ring The Bell because I knew hormone or endocrine therapy was to follow, as well as five zometa treatments over the coming three years. How could I ring the bell to celebrate the end of treatment?
• That I felt inclined to look at the day I noticed my bumps on my nipple and knew I should make an appointment with my GP as a lifesaving day. The sunlight caught the bumps which caught my eye. In the days of Covid, I fear a GP would be likely to say over the phone that it doesn’t sound like anything to worry about and get back in touch if anything changed - after all, both my GP and my breast surgeon reacted the same way: some interest/intrigue but no concern - till the biopsy results. I decided as I wrote that post that I would celebrate 12 September as my Lifesaving Decision Day, something truly positive.

So what has gone wrong? I’m not sure but I spent yesterday and today, my anniversary, in a ball of misery. Mostly it’s bitterness at the constant pain and the utter fatigue that sweeps through me. Bitterness is not a great feeling; it can eat away at you, as I found during the years I found it impossible to accept my infertility. I prefer the anger I felt last week but Dr U defused that. 

An ill-chosen comment hasn’t helped. I wouldn’t repeat it but the effect has been that some of that ‘what if’ feeling that every cancer patient has to live with but which I’ve successfully processed and tucked away safely somewhere in my head has seeped out and suddenly I don’t feel as safe as I did. That’ll teach me to be so smug that I had that bit sorted!

So today is my breast cancer anniversary and it feels horrible. A touch of what if the cancer comes back almost smothered by what if this damage is permanent and I’m condemned to a life of pain, misbehaving joints, slumped walking and generally not being myself. I know I’m getting on a bit now (sorry, girls) but I didn’t expect on the gloriously sunny September day two years ago to be so rapidly reduced to a self-pitying pessimist. I don’t think anyone expected it, certainly not the oncologists (though they knew I was in for a tough time). Have I been unlucky, more unlucky than most of the tens of thousands of women who face the shock and horror of this diagnosis every year in the UK? I don’t think so. I think everyone has their own issues in the aftermath. I wonder at Mum. Part of me is in awe at how she just got on with things, each time. But another part of me wonders - did she have that gnawing fear that it might come back a third time, always there like a Jiminy Cricket whispering on her ear?

What now? There are a few anniversaries coming up that I have no plans to mark, thank you very much. Should I celebrate surgery day - all cut away, all cancer removed along with a whole breast and one of the lymph clusters? Feels hard to think about that, apart from it being a bit of a blank. Anything after that, no matter how good the news, is tinged by the fact that I felt like shit. Maybe I’ll have to wait to my 5 year anniversary, after which my odds against a recurrence improve considerably. It’s a long wait. Oh shut up Jan. You’re here. Be grateful. Without those freckles, you would still be happily going your own way, carrying a stage 4, probably terminal cancer bomb ready to be dropped on you at any moment. Yes, today was worth celebrating even if I can only do it by toasting myself now with cold water, some crushed Tuc crackers and a few grapes!

And an outdated discount code :) 

195. Do I really want to hear the truth?

 Before anyone panics, I don’t mean about cancer recurring!

Thursday, I had my telephone consultation with Oncology. Much to my pleasure, it was Dr U, the young (well, relatively) Irish consultant who had dragged me through my chemotherapy so he was familiar with my history and I felt able to speak in free-flow. Poor man. I’d already talked with a Macmillan nurse and been slightly alarmed but I asked the same question and at last got an answer. There is no such thing as cancer aftercare specialists for adults. They exist for young people but not us. It falls to oncologists to follow things up and to GPs (not encouraging when you have a GP like mine who admitted she had no experience of cancer treatment side effects. Why didn’t I scream that it is her job; if she hasn’t the experience, then get it!). Dr U said there should be such a service - St James’s is the regional centre of excellence after all - but there isn’t :( 

So we were off to a bad start. Remember I was nurturing my UTI at the time and waiting for antibiotic magic to work so I was perhaps vulnerable. However, Dr U took me seriously and asked me to list my symptoms in order of severity. That was a long tale of woe and I confess I omitted to mention a few things like still being wide awake at 2am but I offloaded a lot and he is the first person apart from my therapist who has listened to the whole picture. Then he drew up an action plan with me and made sure I was returned to his list so we’d get continuity. Brilliant. Dr E has been very nice but I don’t know her from Adam. Dr D, with whom I completed my treatment and all the follow-ups is way too focused on results to bother with a holistic picture.

So where am I? 1. My MRI showed nothing problematic, nothing that would cause my lack of balance, misjudgments, muscle weakness etc. 2. Peripheral Neuropathy (which I may have permanently, it was always a risk but it’s still early days) DOES cause neuropathic pain (contradicting Dr E) so my weird pains have a possible cause. Example: I stood barefooted on the carpet and lifted my foot to dry it because I was sure I was standing in cold water spilt on the carpet. It didn’t matter that I knew the carpet was dry!! Confused messages to the brain. 3. Neurology may not be the best team to look at my balance etc as they tend to focus on specific disorders and take a long time to arrive at a different conclusion like chemotherapy after-effects. So here comes the humiliation 4. He wants to discuss my case with the Frailty Team. My mum went to that clinic when she kept having her falls!!! He did say they might not see me as I am far too young for their service but the insult had registered. Insult? To be honest, I guess I am a bit frail and I really would like to regain some of my upright stability. 

I now have to wait 4 weeks till he rings me again with a proposal or even a sorry, nothing doing. Meantime, I have registered with MySarah and I’m doing my hand exercises daily. I hope to return to the leg exercise tomorrow, now my bladder feels more secure, and go for a swim next Tuesday and just pray my GP was right last week when she said it was bad luck and not swimming that caused my UTI.

Fingers crossed that there is something out there to get me back on track. I feel something of an invalid right now. But I treated myself to a lovely bouquet to cheer myself up (and supported our local businesses): 

And I got invited by the Breast Cancer Now site to join their Community Champions as it’s been noted that the replies I write for others are “consistently kind and thoughtful.” What a lovely compliment. Sadly, I’ve had to say no for now as I think I need to get myself sorted out but maybe anther time.

193. Testing, testing...not testing

Completed 3rd September. I’ve not been my usual (?) chipper self:  I’ve dutifully been making my contribution to Covid-19 research since its introduction in March. It’s run by King’s College, London and I sent the link to all my contacts so if you aren’t doing it, it’s not my omission. It has contributed immensely to understanding of the coronavirus, including providing the data so loss of smell/taste were added to the official list of core symptoms, so it feels worthwhile. It’s simple enough: 2 questions daily. Unless something is amiss - and that’s when I question my civic duty in the face of such confusion. 

Instead of clicking ‘I feel the same as normal,’ I clicked the alternative because my IBS had sneaked back. In fact, I had a tummy upset following my first foray to the pool at Cookridge Hall (I have this plan that swimming will help build up some of that missing muscle mass I apparently have and also build up my stamina. If you’d seen how little I managed first time, you’d question if it was worth it). The questions that followed in the survey were simple yes/no responses. Yes, I had an upset stomach and yes, my appetite was poor, unsurprisingly. The next thing I knew, I had an email saying my responses indicated that I had (or didn’t have) some of the symptoms of coronavirus so would I be willing to take a test? They were asking people with and without symptoms. So I agreed.

Meantime I was faced with ethical decisions. I knew I didn’t have coronavirus but I didn't have the proof. I had to tell my potential visitors even though they would be sitting outside. End of visits. So then I thought what if they are right and I’m wrong? I’d have to do the test. The test arrived very quickly but not quickly enough - a home test has to be done within 4 days of onset. I didn't even understand the posting directions - within not more than one hour before the time stated for collection. Eh? Did that mean I had to post it in the last hour or before that last hour. It was Saturday anyway so it was academic. No test!

You’d think that would be it but no. My tummy settled and back on track for swimming, did I have the moral duty to stay away just in case some algorithm was right? If it was right, I’d be putting others at risk and risking people’s jobs. So I decided I’d better not go till 14 days since the tummy upset had passed.

Then it was back in my cossie, manage to swim further and do more leg exercises like water-walking (bloody difficult when you’ve not much strength) and then a UTI, from which I have yet to recover. Sadly, no swim this weekend, although my GP did say both the tummy upset and the UTI are just bad luck, not the pool. My oncologist says the reverse. Why does no one deal in facts any more?