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 :)