246. Lamenting for the NHS

 I have to see the funny side of this but I really feel for the poor nurses.

Monday, I had an appointment at 8.45 to see Professor Chang, head of Ophthalmology, at his request I should add. I’m never good at that time of day so I was just about ready when my bowels decided to activate, not a usual occurrence. By the time we set off, we had 25 minutes to do a 25 minute journey but this was rush hour (not bad at all) and school run (horrendous - my language embarrassed even me. Dennis stayed silent.), plus I needed to park as close as possible. There are many ‘disabled’ spots right outside so I swung in, 10 minutes late, only to find they were all taken up. I’d love to have done a badge check!

It’s a horrible place compared
to the Bexley Wing

Eventually I parked in the NCP opposite and used my Blue Badge for the first time - but it meant a short trek and then steps, too many steps, all the time my blood pumping hard, my blood pressure up and I could hardly breathe, I was so exhausted. I then had to queue according to covid rules only to be told I needed to go to another clinic upstairs. No way could I do three flights of stairs. I found the lift. Dennis and I got in with some other bloke going to level 2; we only wanted level 1. The lift moved, the doors opened and we got out, only to find ourselves on the same floor - the lift must have gone down and come back up. Back in the lift, the other man trying hard not to laugh, and we got to Floor 1 which was the cardio floor. I was close to needing it too. So we set off to find a minuscule sign saying Eye Clinic. Den stayed outside, I got registered. I read my wonderful book (The Book of Longings). I got called in for the preliminary eye test, the puffer and the chart, I read some more. Then three of us were called together to be told the doctor wasn’t here so we would need to follow the nurse downstairs where another doctor would see us.

Off we trailed, back down to the original clinic I queued for. Queued again and I was told to take a seat so I started reading again. The woman next to me asked about the kindle and we were just chatting when I noticed a sign saying waiting time could be one to four hours. It was 9.50 by now and I needed to be home by 10 to take my chemo pills. The woman advised me to tell the nurse. I did and was magically transferred to the closer waiting area (felt bad about that). Problem - no room for the doctor when they located her. So the nurse set about clearing space in a junk room. All ready, then the nurse came and said I needed to go back upstairs to the other clinic as the doctor was there. Back we trailed, me in the lift, the others by stairs.

There may have been a doctor (somewhere) but there was no room so yet again, the poor nurse set about clearing space in a junk room! Along came the doctor and they called me first, which was kind of them but I’d never get home in time for chemo, which is a strictly timed schedule. The doctor was probably a teenager, called D. She was very kind and gentle, good bedside manner but, after introducing herself, she asked “How can I help you today?” My lack of blood cells, plus wearing a mask, meant I had to puff out the answer “I have no idea. Professor Chang asked to see me after talking with my oncologist.” She wasn’t aware I had cancer, no idea I had a tumour in the medial canthus that was showing a small progression and so I had to go through the lengthy background just to get to the point where she could help. Suddenly she was so sympathetic, so sorry, that I wondered what it was that I’d told her that made her look at me as if I was going to die!

She decided to look at my MRI. It was literally a junk room for dud equipment and the computer didn’t work of course. She trotted off to consult the consultant and look at the MRI scans together so I was left to more reading. Then she came back and said they had decided that it was a small progression (yes, I told her that earlier) and there was nothing to be done so they’d see me in 3 months. I shan’t hold my breath! So, two and a half hours to be told what I already knew. She did ask if I had any questions so I asked about varying things visible in my eyelid. Yes, they could each be the result of the tumour. Could? I might have an eye riddled with malignant triple negative cells resisting the capecitabine and spreading wherever they wanted! Well, yes. That’s when she looked stricken.

By the time I got home, I was furious. No doctors, no communication, no rooms, poor nurses having to deal with increasingly frustrated patients and so apologetic when it was no one’s fault but really, it did show the NHS is falling apart. A specialist doctor with no access to patient notes??? I missed my morning chemo (a plus for me) but the chemo decided to protest and I’ve been gripped by the Cape runs ever since. I must be shedding pounds.

Rant over.

This month’s bouquet, arranged by Dennis. I refuse to tweak it. I think he’s done a fine job of it, though he doesn’t know a rose from a fern. The light is fading so you cant see the lovely colours.

The highlight of my week so far though - Saturday, Carol drove me over to a new garden centre at Ilkley - we are SO getting old! I’d forgotten my blue badge so it was a bit of a trek for me and obviously there was a lot of walking round, but there were walls to lean on. Such beautiful flowers. I bought a blazing orange and red ranunculus, a pink camellia (mainly to see if I can keep it alive) and a bowl of purple and yellow violas, a little garish but pretty nonetheless. I give them to the end of April! I also bought a lovely gold and clear glass vase for me and a glorious textured blue glass vase for Carol as her 70th is coming up. She was going to buy it anyway so I knew it was a safe a choice. 

As an additional note - Happy Birthday to SHEILA. I did know the date (21st) but didn’t trust the postal service. How they arrived Friday I don't know! And apologies to LESLEY for not replying to her email yet. It gets hard when it’s just cancer, cancer, hospital, cancer. 

EXTRA: my blood and tumour markers remain unchanged. Yippee. PLUS Dennis decided to clean my spa bath. Eventually it was all on the floor too. I didn’t dare interfere, just took a snap!

263. Happy Anniversary

 

Yes folks, it’s a whole year since I said “Well, I didn’t expect that” when I got my Stage 4 diagnosis over Zoom. It feels like a lifetime! This glorious flower arrangement is a gift from lovely Trina to make the anniversary something positive and Dennis and I topped it by going out for a meal, his first social engagement in the real world since lockdown (you may, correctly, guess he’s not a social being lol). The only problem was that, although they serve their breakfast and lunch menu till 4pm, there was no food on so I was forced to resort to lemon drizzle cake. What a substitution.

Yesterday we went to the oncology clinic for my regular appointment with Dr U. He has obviously been spending a lot of time looking for solutions to my problem and definitely has some good ideas. Electrochemotherapy for my skin mets if they get worse and head to the surface. It’s a new treatment used for skin cancer, apparently. But I don’t need it yet.

I now know why I have an eye appointment. Dr U has been discussing my condition with the head of Ophthalmology - no, surgery is too dangerous; no, electrochemo won’t be possible there; yes, radiotherapy is a possibility (terrifying - it ruined my throat, so what would it do to my eye?? I cringe at the thought). Then Professor D suggested it might be useful to see me. About time too. I was meant to have a follow-up appointment last May! But this is Oculaplastics so maybe they will be considering if they can open up my eyelid again. Well, I’ll know on the 21st.

I’m to stay on capecitabine for the foreseeable future, until it’s definitely no longer working. There are new treatments offered in Manchester and Sheffield but they may not be right for me. He also realises that, for me to even get to Manchester would require drugging me to the eyeballs and chemo on top of that isn’t an easy option. There was something else but I’ve forgotten. Anyway, in the tradition of Seconds Together, here are Dennis’ and my waiting room feet. I should add that Dennis’s Doc Martens are 39 years old and have no wear on the heel to speak of. How’s that for longevity!! Actually, most of his clothes are probably older!

262. Stable Mabel

 I have to write this today as I have my clinic appointment at 8.30am (they really don’t know me - I’m sub-human at that time) tomorrow and the picture may have changed. I rang to get my blood results and the nurse who rang back was my first breast care nurse, the amazing Belinda. There, named because I can’t see me ever being critical of her. My results remained the same and she told me that I am considered STABLE. I can’t tell you how my heart soared (background of ethereal strings playing here) but I wondered why Dr U has never used the term. I was cautious. I did check this included my MRI results and, yep, as they say in Stage 4 Deserves More, I am Stable Mabel.

Dr U did ring this week but it was just as I was driving off to the hairdresser’s so Dennis talked to him for about 15 minutes. Knowing his usual concern for Dennis’s wellbeing (not in the slightest changed after his chat at Maggie’s of course), I assumed that would be the subject but, apart from the message that he has arranged an appointment with Ophthalmology “in 2 weeks”, Dennis said he was asking him how I am coping. That surprised me.

It was great just being normal and going to the hairdresser’s. She did a lovely job of it and I left to a blast of wind that ruined the overall effect. There was just me there and Liz wore a mask for my benefit, which I found rather touching. She was curious about the skin mets, which obviously I wanted my hair to keep covered, and she actually ran her fingers over them without a thought. I felt curiously reassured that someone could be so matter-of-fact about it. No mauve and steel highlights again. A tiny voice was saying ‘Don’t waste your money’ cos I know things could change very quickly and I’d need another buzzcut.  This is me after a nap completely undid all the wonderful flicks.

I am officially decrepit!

This cycle has been a bit rough at times but loperamide means I can go out without fearing another bout of the Cape runs. I just wish I could motivate myself better instead of yielding to the fatigue. Tuesday I had reflexology/reiki and then the hair appointment. You’d think that would lift my spirits but no, I was flat out after that. Yesterday I was up and about to do chair pilates (beginners) - I don’t lack the agility; it’s just that my muscles go into spasm if I twist or even if I just point my toes, so I spent maybe a third of the time frantically massaging my foot or my whatsits, the muscle running down your side. It’s something I hope I can do by myself as I really need to improve my back muscles. Fatigue is giving me round shoulders! But my Ercol chair, with its ancient seat pad, is not the best for me. I may have put on weight but it’s concentrated down my front so my ‘sitting bones’ as someone once referred to them, still dig into any hard surface. Ouch! After that very gentle class, it was back to flopping on the bed.

Soooo… fingers crossed tomorrow.