228. Ostrich neck aching a bit

 

Mentally I still feel I’m in a good-enough place, though I felt this evening like I imagine a cat must feel after a trip to the vet’s - the need for time and space to lick my wounds. This has surprised me as nothing spectacular occurred today, but I think Dennis’ tuts and “I could do without this” makes me want to turn round and ask who the hell has an “incurable disease???” So, time for me, time to deal with the reflux the contrast dye has caused, time to work out what I want to say, what I need to say and who needs to hear.

Today my lovely neighbour Lisa picked me up at 8.50 and we headed for St James’s. She dropped me and sat in the car studying her antiques and, I imagine, freezing. FOUR hours!! I was at the clinic by 9.30 and informed my appointment was at 10. Why does lovely Dr U not pass things on?? One of the nurses thought she knew about it and checked my notes and yes, the plan was for the CT scan at 10.  Got into to see Dr U at 9.45, quite a useful discussion, then upstairs to the ward to be cannulated (presumably a sop to whoever was doing him a favour in Radiology as my notes say “difficult to cannulate”.)  Yep, I lived up to it. 20 minute wait for a nurse, then she bustled along and said they send all the difficult cases to her. 

Two veins failed in my hand, despite her admiration for them - touch of the vampire there. Painful doesn’t describe it but needles don’t faze me so press on. I asked about inside my elbow so she played with them for a bit and went in. Aaargh. Dead end. Even she agreed (no blood coming out). Attempt 4 worked, though with a lot of bleeding, so I got the lift down to Radiology, realising my arm hurt like b****ry cos it had to be kept ramrod stiff. Nope, no appointment. Next Wednesday at LGI. I explained that the oncologist had sent me down so off she went to enquire. Nope, no one knew anything. She would ring the breast clinic. Now she could have spoken to anyone who might have a snowball’s chance in hell of finding Dr U. 30 minutes later, I asked if I should go upstairs and ask myself. No, no need.

Another 20 minutes and I just picked my stuff up and walked out. I parked myself outside Dr U’s office so

I could grab him when he came out for his next patient. It worked. He marched downstairs, came back and said to go down and wait. By this time I was a bit edgy so I resorted to half a lorazepam and then I was straight in. It was different this time - the contrast dye affected me differently. Last time it was a weird  feeling that disappeared in seconds. This time, parts of my body felt like they were in fire (ok, exaggeration, a strong internal warmth) including my hands. Weird. 

Then home to tell Dennis. Tell him what. I had no intention of telling him that Dr U looked at the unhealed  spot at the top of my vertebrae and decided it looked very much like what happened with my eye. He encouraged me to have a photo taken (Lisa did it) and I do see what he means. So now we wait on the CT scan. Is it better than the MRI at picking up cancers? I thought the MRI was infallible! We moved from it’s possible this may be the only site of the new cancer to it’s possible it has spread... so I don’t know what to think. He wants radiotherapy for the medial canthus but my eyelid isn’t sufficiently healed. One tiny bit isn't healing at all, as far as I can tell! So that’s a handy delay. But maybe I’m being stupid and I should go for treatment asap. Big sighs.

Full picture next Friday. Oh, yeah, I nearly forgot. None of the team have ever seen breast cancer in the medial canthus. I just want to be normal.

And yes, I did tell Dennis :)

I see I have acquired a comment. My first! Unfortunately Google won;t allow me to reply so I’ll do it here:

Dear Alan. Thank you for your effusive comments. I’m sure your husband’s erectile dysfunction must have been a source of great distress to you both but comparing a floppy dick to the harsh realities of cancer isn’t appreciated. Perhaps Dr Itua could cure you of your insensitivity and poor blog etiquette as well as the diabetes. Regards, Jan. 

227. Ostrich working well

 A week has passed with not a lot going on, except the things I have instigated:

Second vaccine has been brought forward to next week (8 weeks) though I doubt it will make any difference at the rate the hospital moves.

Dental examination booked (far scarier than much else - I exaggerate not)

Breast care nurse following up the two scans. Apparently dear Dr U recorded the need in my notes but didnt action anything so I had to contact the BC team and they are chasing Dr U to authorise the scan he wanted done THIS week. On the bright side, it might mean he’s not certain it’s going to be a secondary cancer but I know that’s just wishful thinking on my part.

I’m in a good place mentally. I’m not fretting over something I can do nothing about and I’m not getting anxious about tests etc until I have to. I do spend a fair bit of time trying to ease Dennis’s anxiety, which is not easy. How awful it must have been to live over 50 years with a perpetually anxious wife. I guess he must have blanked it or I hid it very well when I could.

I sat out in the garden a couple of afternoons, in my parka but plenty of sun. Unfortunately, plenty of builders too and I could hear their (often misogynistic) conversations as they yelled across the beams of a new roof. So, we’ve decided to get a “summerhouse,” something that provides an element of protection from the wind which is still strong but also makes me feel I’m not being overlooked from all directions. It might also disguise the hideous mess of fencing. I was trying to describe it to a friend and the closest I got was a beginner at machine embroidery being given free rein to locate the fences! No luck in finding the perfect summerhouse so far but a trip to a place in Harewood will happen. Bramhope and Horsforth were flops.

So for Dennis at least, there is another painful weekend of waiting and all the tension and bleak thoughts that brings. For me, well I have a bit of a fatigue day today but hopefully I’ll be trying a bit harder tomorrow. I have my lovely Charlie Mackesy t-shirt for Comic Relief 2021. I think that’s as close to involvement as I need get. Oh, the joys of teaching on Red Nose Day! Oh the joys of retirement!

Love that the Boy is now a girl.

BTW, the primroses aren’t (sadly) from my garden - they were outside Maggie’s. Still beautiful :)

226. I need my ostrich

 When I started this blog, on a steroid high after a ruined Christmas thanks to my first chemo, I defiantly called it “It’s just a disease,” I still maintain that. It doesn't carry the helplessness of a dementia diagnosis but it carries a lot of stigma, dating back to the inability to do much except cross your fingers in the 1960s. Recently, I’ve felt like changing the title to “It’s a way of life”. There’s barely been a minute when I haven’t had a reminder that I had cancer - annoying doctors referring to it, painful joints, sagging upper lip and lisp, nasty saliva, clumsiness...all chemo-driven, despite the fact that I finished it officially in March 2019. Two years ago. 

And two years on, I learn that I still have breast cancer - in the lump in my eye socket. Sorry friends. I really wasn’t expecting it, although I had unpleasant moments of being realistic. I was completely thrown but my manners were better this time. I just said “I really wasn’t expecting that”. And yet again, I heard an expert in his field say “Nor were we”. 

How do I manage to be so effing unique? A clear mammogram. A breast surgeon telling me he didn’t think I had anything to worry about. A clear MRI January 2020. Two clear MRIs January 2021 but with reference to the “indeterminate mass” that “in retrospect” they can see has grown since 2020 in the eye socket. No one mentioned it in 2020. It doesn't feature in the radiologist’s report. Dr U is going to ask the radiologist to talk him through the two scans but it looks very much as though something was there and they would have kept their eye on it - I would have kept my eye on it. Meantime, it’s grown, it’s had 15 months to do whatever this cancer chooses to do. I want to be angry but I need to know it’s justified.

But in an eye socket???

Same with my GP practice. I didn’t bother them about it till August when I saw that real live doctor. I asked her to look at it. That’s all she did, literally, from her seat safely 2m away. If she’d examined it, that would have perhaps been 6 fewer months. But she didn’t. Nor would the practice refer me to Ophthalmology as the optician recommended early in September in those glorious post-lockdown days, not till November when it was visibly worse and I had to send those photographs. The upshot of the referral was a letter saying the team were considering it and would let me know the outcome. I make excuses for that GP but, if the facts support it, I shall have to make an official complaint. Same with the radiology report. I’m just looking for someone to blame. Sigh.

Meantime, I have to struggle with my phobia - the vomiting husband has emerged again. I could deal with an anxious and stressed husband - I did for most of yesterday - but I cannot deal with this. Don’t I have enough to handle? Blood tests and an ultrasound on my neck next week, then a CT scan as soon as there’s a slot. Results from histology - which of the two cancers is it? Is it the hormone-driven one (I’d be very surprised as I don;t feel I’ve a hormone in my body)?

It’s just bad luck. I knew I was high risk without the regular reminders, I’ve moved from che sera sera to ‘it is what it is.’ I don’t know quite what that is so I’m not going to jump the gun. I got through it last time. Let’s hope...

225. No news...

I’ve been back to the clinic and my eye is healing nicely. It was Dr K again and she’s not good at reassurance. I think she’ll be disappointed when histology finds I haven’t got a metastasis to be honest. They’ve suggested nothing else. So she said to come back in 2 to 3 weeks for the results, saw my face drop and suggested giving me the results on the phone. In the meantime, she was browsing my records and said “Oh, I can see they’ve already got you down for chemotherapy.” That moment is recorded on my Fitbit as a rise from 74 heart beats per minute to 110 in an instant as I yelled “WHAT??” Then common sense set in and I asked her if the date was for July. Yes, it was. That’s my continuing biphoshonates treatment. I told you she’s insensitive!

Next Friday, I have a video call with oncology in the morning and a phone call from Ophthalmology late afternoon. I’m kind of guessing that the oncologist will refer to the results since he made the referral so there will be no shocks in the afternoon. But it’s all so wearing, NOT thinking about something that really ought to be thought about, just in case.

However, my ostrich approach does work, anxiety-wise, the let’s keep that head buried and try not to get any sand in the stitches. I am told the stitches are self-dissolving and will be gone in 4 to 6 weeks. I had self dissolving stitches in my mastectomy and they were gone within 10 days. SIX weeks?? I look like I have a little stretch of barbed wire across my eyelid, with a big red and black cloud behind it!

I might fool myself into not feeling any anxiety but it always find its way out somehow. Immunity this time. Another swollen gland (just tell the GP, I was told - she must have thought I was mad) and another UTI. The same antibiotics as last time. Not of course the one that worked immediately but the one that didn’t work because that’s what my UTI should respond t, according to a GP I’ve never met before. 7 days instead of 3 so, according to the GP, it will soon be sorted. Well, I’m on day 4. I have excruciating stomach aches and it’s had a bit of an effect on the UTI but it’s not gone. I mean, why not just give me what worked last time? Why prolong the inevitable?? I am so pissed off. Rather apposite, that.

Another week of waiting...

See, just as red overall, still swollen - BUT no crows’ feet!! OK, yes, I frown a lot!