Saturday 12 December 2020

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 :) 

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