Late night ramblings

Hi squeaky 

They’re good thanks thoroughly spoilt, gorgeous cuddly babies. 

Good luck tomorrow. I’ll be thinking of you. Let us know how you get on xx

Kiwi Wolf

There are some great hard working politicians. My brother in law was an MP and was elevated to the House of Lords last year. He is very hard working and I think he will be at the All Party Meeting on PC.

I totally agree that patients need to advocate for themselves. We need to be able to ask questions and talk about care. I’m in Scotland where there are lots of hard working professional medical people. However, the whole system is out of control. In our GP surgery which is the second biggest in Scotland you can wait nearly four weeks for a routine appointment. It’s just so understaffed and they can’t attract GPS.

im sure your talk will be great.

Squeaky

Totally with you there, Squeaky. No better down here - although I have a wonderful GP if I want to see him specifically I have to book six weeks in advance! Or just see any of the other GPs who are also good but I don’t have the same relationship with them. They have nearly 40,000 patients on their books and it’s not a huge practice. Crazy. Few medical grads want to be GPs these days. It’s more of a vocation and good ones give as much pastoral care as medical.

Thete certainly are some great MPs - our last one was marvellous but he retired and now we have a publicity serving Tory twonk.Hey ho! I didn’t vote for him though!

Hello all and hank you for the lovely emails. A longer one from me will follow soon. I am so nauseous it’s infuriating.

i did not have good scan results. I loathe going to se my consultant and seem to feel the need to put a face on. Actually it wasn’t anything I wasn’t expecting. Doctor said I didn’t appear well enough to tolerate more chemo but she’s trying me on something called Vinorelbine from tomorrow. She hinted I may be approaching the time when the disadvantage s of chemo outweighed the advantages. I won’t be the first  to be faced with this choice, I know, and I have lived longer than expected. I think it would help if I just felt comfortable but the nausea is quite overwhelming so where to start? I’m in a new antisickness tablet, Domperidone. It’s not working yet. Here’s hoping. I think I could feel much cheerier without the constant threat of being sick.

We’re very excited waiting for baby’s arrival. The birthing pool is set up and ready. There are a million stairs in my son’s flat which isn’t easy and will be even more difficult for them once baby is here. As for me I have to go up on all fours (just like at home but more stairs). Meanwhile the local authority has agreed to fit a stairvrail into my house. It has taken weeks to get them to agree and I was all set to pay for it myself. 

I’ll be back! 

Pepys xx

Lovely Lady P. I was so sorry to hear about your unwanted results. I've heard how awful the waiting is. You're a very calm, optimistic person. I'm so glad they're trying something new with you. I know my health crap isn't life threatening. But i'm on & have been on very strong medication. When i was fitst diagnosed with reactive arthritis, i was on about 12 tablets a day. Horribel, very strong stuff that made me feel so ill. I had constant nausea, felt like a zombie. One day, my brain was so high, i didn't recognise my brother in law. He looked familiar. But i couldn't remember his name!! I couldn't read, or write or make sense of anything. Such a scary night. It lasted about 24hrs. My Consultant lowered my dose of one of the pills the next day. It was like ahlzeimers. (I was 22 at the time). It's scary what drugs can do. But it's also fantastic too!

I've had some distressing news too. (Not the same as yours Lady P). But still serious. I had my Moorfields uveitis appointment today. They've told me i have swelling behind the back of my right eye. In the 26yrs i've had the condition, i've never ever had inflammation at the back. It can be more serious. I was offered a deeper injection in the eye today. But i got too emotional to have it. I had a terrible teaction before. Felt so faint, felt i was choking & felt so sick. Was shaking after, just like a bloody junkie! I was upset about the news. Went outside. Had a ciggie. Rang my boyfriend. He thought i should have had the injection. The cigarette calmed me down. I went back in to say i'd changed my mind. Instead of the 2hrly steroid eye drops that i have to have in both eyes. (I have iritis in the left eye too). I said i wondered if i could have the injection. A&E told me they don't do that sort of injection. I was sent back to the clinic & was given the medical secretary's no. I was exhausted. Went to waitrose. (I always go there if i'm feeling extra low). (Real treat to go there!) i bought 3 of their cappuccino mousses. Really gorgeous. So creamy, but not too coffeeeee. Plus with a cup of coffee, they can ease your tense mood!

I must seem selfish going on about my health stuff. When Lady P & co are so optimistic & calm. I'm waffling on. Just wanted to wish you all the luck Lady P with your new drug. (They're thinking of offering me a new infusion. I've been on one for 13yrs. They're wondering if it's stopped working. Got to have a big conflab with my Con man & rheumatologist!! So quite serious. Anyway. Meant to say good luck with the 'new arrival'. I hope everything goes as 'smoothly' as it can!!! Keep warm Lady P. We all love you!! X

Dear Vixen,

thank you for that very sweet email. It is all too easy to forget one isn’t the only person in the world with health problems. I never had any before, I had a lovely misspent youth, smoking, drinking and eating whatever I liked! 

When you mentioned not remembering your brother in law’s name I thought I would amuse you with a little story of something that happened to me a couple of evenings ago. I was asleep on the settee, looked at my mobile phone, saw that it was 10, realised my son was picking me up to take me for an 8am blood test and rushed to get ready. He wasn’t answering his phone, which was unusual. I was really panicking, rang the chemo unit to apologise and left a long rambling message asking if I could move my appointment.

Have you guessed yet? I tried ringing my son again and this time he answered. ‘Mum it’s 8 o’clock at night. Your appointment is in the morning. ‘No!! I’ve left them a really stupid message.’  ‘Well never mind, you’ll have given them something to laught about.’

I suppose I should have noticed the quality of light. I should have noticed that 20.05 is evening. This is not the first time I’ve vecome disoriented and more since I’ve been on cancer treatment. 

Vixen, it gladdens my heart to hear how cakes give you such pleasure, especially in difficult times. Waitrose will never go bankrupt while you live, 

I need to pull my diet together, not in the sense of eating more healthier but of eating at all. I felt every upset this morning being weighed...down to 62kg at 5’8”. It is too bloody thin!! I seem to have developed knock kneed and my arse and thighs have vanished! I spend lots of time thinking about food but eat the tiniest meals. Too much food thrown  away. I love pasties and will kill for good pastry (no swede though). Today I watched the Hairy Bikers knock up Indonesian stew and a glorious fish pie! 

Poor you Vixen, I feel for you with the eye problems and what’s difficult is it’s been ongoing. I’ve only ever had one eye problem when Freddie (my eldest) accidentally jabbed me in the eye and scratched my cornea. That was actually several years of intense pain but apart from that, nothing.

tonight I’ve had a short reprieve from sickness and vomiting and I feel calm again. At I time like this is normally have a lovely snack but that would be tempting fate. 

Pepys xx

Hey Lady P. I've had an argument with my skanky neighbour opposite. She's only been living here a few months. (One of the 'i've got mental health issues brigade') i know there are some genuinely nice people with emotional problems. But she is a nasty piece of work. She had her music quite loud at 01.30. I knocked on her door & politely, but firmly asked her to turn it down. She's a drunk junkie type. As you know. I have serious eye problems. Have been on ALOT of eye drops. My left eye has muscle damage, so it looks quite closed. Plus i had an emotional, tiring day. I hadn't drunk any alcohol. She squinted at me with a glass of vodka in hand & slurred the words. 'Your'e pissed love' & proceeded to call me fat. (I'm not fat. I'm a size 14). I have a womanly figure & always wear nice dresses. I always try to look my best. If i feel 'rubbish' i try even harder to look my best. She always looks scruffy, has bad junkie skin & is always bleating that she has mental health issues. She lost her keys on Sunday. Called the fire brigade out to break her door. Then got a locksmith on Monday, who fixed the lock for free. She's the type i can't stand. So after she insulted me. I really lost my cool & swore at her, telling her i had problems with my eyes. I have lived in my cosy little flat for 15yrs. It upsets me when 'people' like her, come & make me feel differently about where i live. They've moved in quite a few 'undesirables' in the last couple of years. So depresding that 'those people' have more protection than me. I'm a Peabody person. She's a 'supported' tenant. I get so angry!

Anyway. I'm so glad the sickness has eased. Me ma suddenly went off her fave foods. She loved cream slices. She would buy biscuits. Have a few. Then lock them in her car. She told me she would have eaten the whole lot in 1 night. But she made me laugh. She would suddenly get a craving for a hobbnobb at 2am. She'd go out with her coat & slippers & a torch & hunt for her biccies in the dark. I think the neighbours got used to seeing her vision 'rummaging'. I got so worried when she lost her appetite. There were a couple of things she carried on enjoyinh. I wondered if you like them? Something light but tasty. Sainsbury's Minestrone soup. A bit of kick. But not too much, with a nice soft buttered roll. Me ma really enjoyed it if it was scorching hot. Plus plain vanilla ice cream. So refresshing after a bit of spice.    I remembered i felt so sick at about 2am. My husband (at the time) went out & bought me some softmints. Mint can really soothe your stomach & i sometimes find just warm milk & a dry cracker. Plus of course. A light comedy. (I do like a bit of miranda, or the office,  only fools. I have a whole pile of 'comfort dvds'. By the way. I can understand your panic about the appintment thing. When you have so many, you're used to looking in your diary & saying where am i today? Which hospital?? Then once you have it in your head. You panic.i was on my way to one of my hospItals. When all of a sudden. I forgot where i was going. My mind went blank. Right im the middle of the street!   One more thing. When i was in waitrose, my vision was rubbish. I put my basket down to look for some ham. I wandered off. Picked the ham up. Then proceeded to put it in a basket. Went to pick it up. (A woman that looked quite alot like ronnie woods looked puzzled. She said (with a real cockney voice). 'That's mine love'. I laughed & said really sorry. I'm on eye drops, couldn't see properly. We both laughed together & she said do you want your ham back?? I was really laughing. The Security Guard laughed. It's quite a stuck up shop. So it lightened my mood!! Bloody hell. I've written alot. Sorry i went on again. But Lady P. It might help if you try the soup to entice your appette & mint for the sickness. I know how miserable it can be. Good luck!!

Love reading everyone's posts, wondered as you love comedy whether you have watched Still Game, it's a Scottish comedy to rival only fools in my opinion. It's about 2 Scottish pensioners  and their lives. Once you get to know. Them you will love them I am sure   love to everyon

For those kind enough to be interested in the tests I have yesterday as a result of my severe anaemia both (endoscopy and colonscopy) showed no abnormalities which is good on the one hand but puzzling on the other. I got alarmingly anaemic so there must be a reason! I'm seeing the GP next week.

Squeaky

Oh Squeaky, that’s great news! Weird about the anaemia though. Let’s hope it’s just a blip and a course of iron will sort you out. I was badly anaemic when my chemo finished but a course of iron sorted that out and so far, so good.

Pepys, sorry to hear things aren’t great tumour-wise but you’re right - if you can control the nausea you’ll feel so much better. I find nausea far worse than pain.Have you tried the medicine which mustn’t be mentioned at all? Supposed to help in that area. Hope the baby turns up very soon - that’ll be a tonic.

Vixen, that eye stuff sounds very wearying. Good on you medicating with chocolate mousse!