273. Continuation …

WARNING  - gory details, not for the squeamish or the missish

Borrowed from Dreamstime

Friday I saw the tiniest man ever. Fair enough, I only saw him sitting at the desk and then peering at me between my decorously covered knees but he was like a baby sparrow - with the most beautifully delicate fingers I’ve ever seen on a man (including D who has beautiful hands). Stupidly I told the poor man, who looked a bit bewildered.

He was a Mr L, Consultant Gynaecology Oncologist - see, I go straight to the top lol - and he asked me the same old questions I can chant off by heart now. Then I was asked to go behind the screen, remove my lower clothing and cover my exposed self with the hospital gown provided. It never ceases to amuse me that they have full sight of the most intimate part of one’s body yet insist we patients cover our naked legs, which we expose to all and sundry when it’s warm enough. The nurse clucked round me like a mother hen, drawing the modesty gown further over my knees, presumably so I had no chance of seeing what instruments he held in his hands or notice his expressions.

He did a quick and very gentle examination and declared that my cervix and vagina were healthy and an colposcopy wasn’t necessary (PHEW) but that I required an urgent referral to Urology as he suspects I may have a prolapsed urethra. Eeeek! I’m NOT looking forward to that examination. The ‘urgent’ was because of my medical record - I think that was to reassure me. Tuesday I received a copy of his letter to my GP instructing them to make the referral and specifying the details - a purplish lesion on the urethra meatus. So there we go. Just one problem. I know my body well. I know the distance between the urethra and the vagina and, to be blunt, I know one hole from another (good job too). The “purplish lesion” is definitely attached to the vaginal opening! So now I wait to hear from Urology, not so prompt as Gynaecology. Actually I looked up Urology on the Hospital Trust’s website. 9/10 referrals wait an average of 38 weeks!! The strange thing is that, since the examination, I've had no discomfort, no pain and there seems to be an improvement altogether. Typical me.

I’m fast coming to the conclusion that, at this rate, the only department I won’t have visited at St James’s is Maternity!! Come to think of it, I did visit Anne there when she had Kathryn in 1981 (?).

Monday I heard via the Secondary Support Group WhatsApp that one of our number, Fran, has been moved onto a syringe driver (whatever that is) and doesn’t have long left now. She only went into the hospice for respite care and now they’ve withdrawn her treatment and put her on end of life care. I confess I did cry a little, as much for a ‘friend’ as for me - a reminder that this condition can turn on you at any moment. Now, we’re just waiting for news. I can’t imagine what she is going though, poor woman. And she’s only 50!!

272. Falling apart?

Friday morning, oncology clinic and all was well. My blood markers are slowly creeping up and Dr U noted that my eyelid looks more swollen. He was a bit concerned about the lump along the upper eye socket - he’d thought it was fluid build up but gradually it’s hardened and he said he should have been paying it more attention. So I have a referral to Ophthalmology again to see what’s what. I’ve been wanting that for a while, just out of curiosity. I don’t know what’s safe to massage and what isn’t.

My tiny new lumps are indeed new skin mets yet the original, what I call the mother lode, is definitely insignificant now. He talked again about electrochemotherapy but that does mean I’d need to stop capecitabine and he wants me to continue with it as long as I can “because the future options are so few”. It’s the first time he’s sounded a bit discouraging but in fact, things are doing ok. Not brilliant but ok.  No MRI results though.Then came the blow - the bugger is leaving in April!!! I took it well, only swearing when I told D in the corridor. He’s young, on the up and wanted very much to go back to Ireland with his family. Sigh.

We decided not to stop off for a coffee as I could feel my mini-UTI was active. I was more than bursting for a pee. Home we went, had lunch, then I went to the loo again and pop! Now considering that I taught sex education (often very frank as is suited to the area I worked in) and also sometimes trained teachers in teaching high school sex education, you’d think I’d be ‘body alert’ but chemo kind of means you take your eye off the ball. With all my obsessing about bowels and constipation and trying not to get haemorrhoids, I never once gave the rest of my body any thought. STUPID. I now had a lump outside my vagina, the vaginal equivalent of a haemorrhoid I guessed. The result of assuming I’d get back some oestrogen now I’d stopped hormone therapy and ‘out of sight, out of mind’. Scary, regardless.

I ended up ringing 111 at 11pm, after Lisa (over WhatsApp) sent a link to vaginal prolapse. I didn’t read much but I did click on the photo and that was mainly what I’d seen when I’d perched with a mirror between my legs. 111 dealt with me promptly, which surprised me for a Friday night, especially as I was warned by the machine that waiting could take up to 7 hours, and the nurse clinician decided I needed to speak to a GP, which would be within 2 hours. I then got a text asking me not to use the 111 service as it was very busy and was only dealing with emergencies. I was urged to wait and speak to my GP in the morning. (Yeah, like they work at weekends!!). That really bothered me. Did I stay up till 1 in case a GP rang or not. It’s not surprising that people are deterred from using these services and head straight to A&E for fear they won’t get a response from 111.

Meantime, the atmosphere was lightened when Lisa suggested I take a photograph to send to the GP - if requested, I hasten to add. Erm… try taking a photo when you need one hand to expose the offending area, one hand for a torch and another for the phone which needed to be held, angled right and leave a digit free to reach the button to take the photo. I got one eventually, then had hysterics at the thought of sending the equivalent of a dick-pic, medical or not! Fortunately he took my word for it, didn’t request an photograph and arranged an out of hours appointment in Sheepscar at 8.30.

Sheepscar is a very dicey area and the building was right on the end of a nightmare one-way system but we found it in the ice and fog and I hobbled to the building. I was seen by a lovely young GP who probably didn’t want that sight so soon after breakfast. He was so gentle and considerate and recommended an urgent referral to Gynaecology. He thought I might have a prolapsed cervix (not vagina) or a large cervical polyp. He said to ring my GP Monday morning to make sure it was done, at which I just rolled my eyes.

 What to look forward to!
She doesn’t look enthusiastic!

Now I owe an apology for maligning my GP practice so often. Monday morning I rang at 9. Someone answered immediately. I almost dropped the phone in shock. The receptionist arranged for a GP to ring me that morning. At 10.30, my GP, Dr N, rang me and made the referral while talking to me. She also gave me practical advice about how to deal with it in the meantime because it is NOT comfortable and is sometimes painful. APOLOGIES. I got a call the next morning - could I go to the hospital Friday morning. So Friday morning, Emma is taking me for a colposcopy (tho I doubt they’ll bother since it’s so obvious what’s happened), and then Lisa is taking me Friday afternoon for my head MRI. I shall be nicely stoned most of the day - one thing to look forward to.

So ladies, respect your vagina. You only get the one. Use it and, if you’re too ill for sex, look after it. Being a dried up prune is one thing, having bits drop out is another!!

271. And into the New Year

I think we’re past firework displays reminding you it’s new year. In fact a whole week has passed so the best I can do is wish each of you a good, healthy and prosperous year ahead. I rather liked this: 

Maybe there’s a tinge of black humour (I know Dennis wouldn’t appreciate it) but that’s how it is. And, only a week into New Year and I’ve already had an MRI. I got a call Friday morning - could I come in tomorrow? Lorazepam? Check; Transport? Check. Yes of course, so Lisa kindly drove me (mildly stoned) for an 5pm MRI. It was done at St James’s Imaging Centre. Comfy chairs, hardly anyone there, so unlike the LGI’s bustling and overcrowded facilities. The young woman (micro bladed eyebrows, lashes a robin could happily perch on, immaculate skin (beginning to dislike her lol), nothing like a uniform on) who took my details took me through to the cannulating room where…nobody else. I’ve never been cannulated by someone in mufti before but I have to say she was the quickest!

Straight in for my MRI. I could keep my clothes on but remove my jewellery. Done. Quick word with the radiologist. “Let’s have a look at this lump on your neck.” Which one?? By now there are about a dozen of different shapes and sizes. Plus the ‘lump’ inside my throat that impedes swallowing but is probably psychological. He warmed to the one in my hairline that is by far the biggest now, tho it changes size frequently. 45 minutes lying absolutely still, trying to create music from the cacophony of thumps, screeches, squeaks and bangs and wondering how it is I can lie absolutely motionless for so long…and it was finished. The only blip came when a disconnected voice said “If you want to swallow, do it now please” to which I reply “what do you mean?” “Clear your throat or anything because after this it’s essential you don’t swallow.” I dutifully did a little cough and a swallow and thereafter obsessed about not swallowing. If he’d said nothing, I’d have been fine - I don’t think I’d swallowed up to then. Thank god for lorazepam because compulsive swallowing is part of my anxiety lol.

It turns out that was a neck MRI and I still have to go to my appointment at LGI on 27th to have my head/tumour done. Dammit, I was expecting to cancel.

This New Year’s Eve, by the way, was the first where my husband was not gently snoring and, for the first time since I don’t know when, I got a Happy New Year kiss and hug. I’d like to say it was the New Dennis but actually it was because the cat had woken him up and he got up to let Del out, forgetting about fireworks, so he couldn’t get back to sleep lol. And he STILL won’t let me have a middle aged, trained housecat to keep my company!

I’m not one for resolutions but, 8 days on, I’m doing quite well on my 1. Get washed and dressed even if you feel fatigued 2. Eat meals downstairs with Dennis 3. Don’t spend days in bed. I’m getting nowhere with 4. Tidy pockets of the bedroom till it is bearable. In fact, things are so bad that I cannot find 2 months supply of my medication which the pharmacy says I collected on 19th December. I am slowly going doolally now. I’m sure Dr T would issue another prescription but it’s the principle - and the fact that I swear I didn’t collect them, just dropped the prescription off. They are on or in none of my logical piles of mess! So I’m writing this rather than keep searching…

270. OK, sometimes I get it wrong

 Yes, hard to admit but my Christmas predictions didn’t all turn out right. So here are my reasons for liking Christmas:

1. A husband trying really really hard, so hard it was almost tangible, to be nice and (much as I hate the word) positive over Christmas. Better than any present, to see him genuinely smiling.

2. Christmas presents, from a tiny terrarium (“I thought you can’t kill this one”), a goody box with sweets from childhood as well as Haribo and chocolate sprouts to an antique ring I chose months ago. Every present a joy - so thank you to everyone.

3. The kindness of strangers (see previous blog). The flowers are still thriving, though I can only remember watering them once.

4. Christmas dinner. Ok, the usual Sunday roast with some pigs in blankets for me. It always makes me think of that year, late ‘70s, early ‘80s? when D said there was nothing he fancied for Christmas dinner so I took him literally and served him a plate of baked beans with a sprig of holly in the middle. His face was priceless. He was more precise after that. 

5. Christmas crackers. We normally don’t have these as I find it quite difficult pulling one on my own. However, a friend sent a box of six rather up-market crackers and, being on his best behaviour, D agreed to join in. Not only were they pretty explosive, they yielded keepworthy gifts. We took the remaining 4 when we visited friends on Boxing Day and our collection included a rather pretty heart necklace (sent on to my friend’s 9yo granddaughter), a butterfly key ring I instantly coveted, a solid metal die, some cuff links (ok, who wears them nowadays??), some nail clippers that actually work and a nifty double-ended screwdriver to attach to a key ring. Unsurprisingly, gold crowns were not worn. I do know when not to push my luck.

6. Cracker jokes. Yes, they were corny but they also were quite witty. They also included charades (I drew the line at that one) and dingbats which were rather challenging. Example, a blanks space with the word ‘just’ printed to one side.* Most important, they made D smile (and groan)!!

7. Christmas cards. I am still awaiting delivery of my order from Etsy so very few people received cards from us this year. Apologies. However I think fewer people sent them anyway because of the postal strikes so the ones we received are treasured. Particularly the one designed and sent by Anne’s 7yo granddaughter with a reindeer design. It took me back to the Anna Newby School of Dancing, which I attended weekly from the age of 8 to 10. At a Christmas show at Brooklands, the local ‘mental hospital’ as it was known then, I performed Rudolf the Red-nosed Reindeer, singing and tap-dancing. I wore my red tap shoes, a red taffeta tunic and had red lipstick on my nose. Unfortunately, the lipstick wouldn’t come off properly so I had to go to school with a pink nose for several days. Miss Newby of course performed The Dying Swan. I thought she was beautiful.

8. Christmas TV. It’s not the same now there are so many channels and so many providers, but it was still fun to go through the tv magazine and highlight what I wanted to watch (ok, record) and there were still surprises. I watched Christmas Carole. To be fair, I tend to partially-watch as I’m such a fidget, but I got a real shock when I saw Suranne Jones, modern-day Scrooge, meeting the ghosts of Christmas Past in the form of Morecombe and Wise. It took a few moments to realise it wasn’t brilliant CGI but two actors who, in my opinion, were superb. They had the voices, posture, mannerisms, everything off to a T. Only in close up could you tell they were completely different people. 

9. Ted Lasso. This was my Christmas discovery on Apple TV (special offer for 6 months with Sky so why not?). Slowly I began to see why this has earned so many nominations and awards (including 2 nominations for best supporting actor for Nick Mohammed, my book group friend Litsa’s son, aka Mr Swallow, on the right). It’s smart, subtle behind the in-your-face appearance and so funny. It even got me past the fact that it’s based in a football club. Brilliant (and so sad now I’ve binge-watched the two series). Loved it!

10. Christmas lights. There have been fewer official lights in Bramhope this year, presumably because of the energy crisis. We still have the WWI soldier with his gun, a silhouette that always makes me smirk as it looks like a giant phallus. It’s outside the Methodist Chapel of all places!!  But driving back from Carole’s, the lights so many houses still displayed were absolutely beautiful. They made up for the hairy journey with black ice and too many headlights and traffic lights causing sensory overload. Maybe night driving is no longer for my chemo-frazzled brain!

So, unexpectedly I had one of the nicest Christmases in several years. Thank you Dennis and I’m sorry it only lasted two days till I said something to spoil it - but it’s my reality, not something to be avoided!! This week I am having another week off chemo (currently experiencing withdrawal but the next few days should be lovely) because of logistics - I either had to drive to St James’s on Christmas Day to collect my prescription or delay taking them, not an option as it would mean no longer seeing Dr T OR take a week off. No brainer.

* Just right

269. Sob sob…Specsavers!

I got a phone call this morning from the manager of my local Specsavers asking if I could pop in some time today. I assumed it was something to do with my prescription as I do need a referral for laser treatment. Anyway, when I arrived, I was greeted by the manager and she presented me with a beautiful bouquet of flowers on behalf of M, the optometrist who’d spotted my tumour and urged me to get a referral to Ophthalmology back in 2020, and the store “because of all you’ve been through this year”. I could have wept. I was so touched.

I’m guessing it’s because I wrote thanking M for virtually saving my life (you may remember my GP diagnosed dermatitis!). I had to pay a price though - a photo with the manager and M, for Head Office. Fortunately I imagine not many people read Specsavers Monthly (or whatever it’s called!). The funny thing was, I just removed my coat and scarf but M dashed to a mirror to check his sparse hair, straighten his tie etc. Then he asked to see the photo and requested a second attempt as his phone in his pocket looked untidy!! Men!

So, no. 1 on my list of Reasons Why I Enjoy Christmas will have to be

1. The kindness of strangers.

268. Reasons I dislike Christmas

Sigh. Observations, not a pity-party.

1. Christmas starting early November. Christmas not just being two and a half days but two solid weeks of desperately seeking to please everyone.

2. Thinking about presents, choosing the right thing for the right person, then not bothering to buy/make  them in plenty of time. This year two friends receive something I knitted pre-pandemic! I’d forgotten all about them (the gifts, not the friends). Unfortunately, there’s one unfinished and there’s no way my brain could follow such a complex challenge right now. Other presents haven’t been delivered. I’m stuck!

3. Ordering unusual Christmas cards from Etsy and not receiving them. Then not realising Royal Mail brought forward its ‘last post’ dates. No cards anyway so…sorry folks. One rude friend here.

4. Living with someone who genuinely can’t see the point of Christmas and is able to suck the joy out of it all with one shrug.

5. Living with someone whose response to the question “What would you like for Christmas?” replies “Nothing”. There are only so many variations on the theme of Nothing one can think of and, after 52 years, I’ve run out of ideas. This year, I had a brainwave. Then, in conversation, I was told he hadn’t bought it because it was a waste of money. Ok, drop that idea. Then (and this is because he’s too lazy to have his own email account) I see that the b****r has bought it!!!! For now, he thinks it’s a delayed delivery, thank you Royal Mail strikers; in fact, it’s secreted somewhere to be wrapped on Christmas Eve. Just one problem: I’ve forgotten where I hid it (:

6. Having to buy my own Christmas presents, thrust them at my husband and say “I hope you will wrap these this year”.

7. Seriously, realising that we have no one to share Christmas with. Everyone is tied up with children and grandchildren, relatives and friends. We have no children, grandchildren, relatives within reach or friends not committed to all those things. But even if we did, Mr Killjoy would find some way out of it.

8. Christmas adverts. Do I need to say more? At a time of austerity, they still paint that picture that the Christmas table must be laden with more food than anyone can consume, that everything must be perfect, everyone be joyous. My heart goes out to all those homemakers (mostly women) who are running round in circles and expected to come up with perfection on a limited budget.

9. At heart, as someone with no religious conviction, Christmas is about children. Without children, Christmas has lacked something essential and eventually become a time to be tolerated until it’s passed.

10. A gently nagging thought - will this be my last Christmas? It casts a pall over everything, even though the thought only pops into my mind briefly and occasionally. It saddens me that D will carry mostly colourless memories of me because he will add no colour, so low as he is.

11. Being a non-drinker. Not by choice or necessity; I don’t metabolise it well. The older I get, the more I wonder if my inability to enjoy myself more is linked as much to the absence of alcohol as to my phobias.

12. I HATE Christmas food. Turkey was not available in my childhood. With luck we might have a chicken. But all it took was “Look at those dead flies” whispered in my ear by my brother and… I have never eaten Christmas pudding, Christmas cake, mince pies… that leaves sprouts, which I do like but which taste very different thanks to chemo and require apple sauce as an accompaniment! So, chez le Brun, Christmas lunch will be exactly the same as what I had today - Sunday, meatless roast. I might get a pig in a blanket if Sainsbury’s haven’t sold out.

Will I be able to come up with Reasons I Love Christmas? I’m thinking….

267. Looking good

Not me, but the progression of this disease!

First, apologies if you’ve dropped by and found nothing. I’ve had a fairly bleak month but then I’ve never been great come Autumn. I try to see the glory of those falling leaves and all I think (oh, I have more in common with my husband than I thought) is it’s all dying! It reminds me of a poem we studied in the first form, by Thomas Hood:

No sun — no moon! 

No morn — no noon — 
No dawn — no dusk — no proper time of day.
 
No warmth, no cheerfulness, no healthful ease, 
No comfortable feel in any member — 
No shade, no shine, no butterflies, no bees, 
No fruits, no flowers, no leaves, no birds! — 
November!

At the time, I thought what a miserable old git! But it’s always stuck with me. Only 2 poems ever have (apart from the WWI poetry) and the other is the sumptuous Ode to Autumn so maybe that’s telling me something - everything has two sides at least. 

Anyway, four weeks since my last consultation, thanks to that wonderful week off that felt like a holiday. We saw Dr U on Friday (only a 50 minute wait this time and I still missed Support Group). My CT scan shows I’m healthy from thorax to pelvis and my blood markers have dropped from 28 to 24 so they are heading back to 18, my baseline. There was no tumour marker owing to some kind of Phlebotomy error. It’s pretty obvious there’s a struggle going on but Cape and I are doing well against the cancer. My tumour is definitely trying to grow - it’s visible and also I can now feel its presence near my sinus. Up till now, I’ve only experienced an occasional twinge but now it’s a constant pressure. 

So, I continue with capecitabine. I confess I really expected to be told it was time to move on to the baldy treatments but Dr U believes cape and I are still winning the battle. I’ve always hated this battle analogy that is the public image of cancer but sometimes it IS unavoidable. There is a battle going on. I watched the remake of All Quiet on the Western Front yesterday and it just showed the futility of war (maybe, in this case, because I knew the outcome). The parallel with cancer is right (ouch, that hurts to admit). It’s a battle. And in my case, we know which side is going to win. But there’s no harm in making it a lot harder for the cancer to come out on top!! 

Unfortunately, my cough is no better. Dr U believes it’s a virus I can’t shake off. The week off chemo did no good, the antibiotics made no difference - so now, clutching at straws, I’m testing the gastro-intestinal approach. I’ve been taking my cape tablets with an extra creamy Activia (what an impact on my gut - only one bout of cramps and diarrhoea) and Dr U is happy for me to continue. Apparently though, it’s a source of contention. Some oncologists believe it interferes with chemo and some believe it can cause infection (I got lost at this point so don’t ask how) but he believes there is insufficient evidence so he’s fine with me continuing with the Activia. He’s moved me onto Omeprazole but that will take time to work, if it works at all. So I also brought home a litre (yes, a whole litre) of Gaviscon Advance. I already have problems swallowing but this takes the biscuit. It is VILE. I managed 2 doses yesterday but my instinct is to swill out my mouth to get rid of the viscous taste, which would obviate the whole point of the exercise. I usually like aniseed and I persuade myself this is not much different from neat Pernod but… it’s proving a challenge.

Then bloods. The queue when we arrived was LONG. By the time I had to queue, it was way better but it was 12.45 and lunchtime loomed. It took over an hour to deal with just 11 patients ahead of me. Then I turned to D and said “I won’t be a minute’. Famous last words. Three attempts to find blood in my inner arm failed abysmally. Not a spot came out and it hurt like hell as she fished around. So she decided to try my hand. Straight in, no pain and lots of blood. But she didn't use the obvious vein they use to cannulate me. She went into a vein between two knuckles. Like I said, painless and effective. Then as I walked away, PAIN. Plus a mother of a bruise that’s very decorative on the back of my hand. Over 10 minutes to fill two small vials!!

So I’m really pleased. I expected D to be but no such luck. His attitude is that the good news is only for this time. Maybe next time will be bad news. He definitely experiences the scanxiety I seem to have avoided so far.  I TRY to get him to see that it’s not helping me but he accuses me of using emotional blackmail - it isn’t, it’s simple fact - and the case is closed. However, right now he is preparing our Sunday roast so I’m not complaining (well, only a bit lol). 

Meantime, the house is falling apart. A computerised component of the boiler has broken (no heating one day and it was impossible to find anyone to come out - till I rang the number of the bloke who did the service 10 days earlier. Bless home, he came in his own time, on the way back from work and he’s overridden the system so we have to deal with the boiler manually for now. It’s either freezing cold or belting out heat. Last month’s energy consumption was nearly 500 quid. What will December’s be, at this rate???). Then our 4 ceiling lights in the bathroom have failed one by one so I walk into a pitch dark bathroom, pull the cord and have to wait till one solitary light flickers on. I thought I had an electrician coming this week but he’s not committed to a day or time so I’m guessing that chance is gone. Heigh ho.