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?