Bad news

I’m suitably cheered. Thanks girls 

Alive

Hi Maggie 

I am with you on the independence thing. Don’t get me wrong, I’m grateful to my wonderful neighbours. But how did I give you the impression that my preference is for Kingsmill white sliced bread? Of course I wouldn’t dream of saying anything other than thank you. But I end up feeling churlish. 

My preference now is for my ex to do the shopping when I can’t get deliveries. He does at least know what I like to eat and where I like to shop. Ironic, isn’t it? 

xxx

Hi Daloni, I know exactly what you mean! But like you I am grateful for any help but what I would give to be able to choose by how the fresh veg and fruit look. Still people do put themselves out to help and I do appreciate it. I miss the browsing around the shops. I didn’t often buy on a whim but how much I enjoyed the looking and the odd conversations with people I didn’t know. Now it’s all video chats and a phone call. Oh and a quick distance ‘how are you’ when we are all by our front doors after the clap for the NHS. Mind you a friend from over the road and I have been sitting on our own chairs having a coffee and chat from 2 metres apart on some sunny days. It all helps doesn’t it.

take care all

love and hugs

Maggie xx

Now ladies, I could be offended but due to the fact that I have no male hormones left I feel I can be part of this tacky conversation!  Bring on more.

Talking of clapping the NHS, I caught up with one of my neighbours this morning. It’s a small cul de sac of 24 houses. She said they had all gone onto the street to cheer as the ambulance pulled round the corner and suddenly everybody went quiet. They saw it pull  up outside my house, everyone went quiet and all the kids started bursting into tears. Then nobody knew what to do until they all started clapping shouting again while the paramedics went inside.

It must’ve been really awkward. I hadn’t realised quite the impact that it would’ve had on the neighbours. It kind of seemed nice from inside my strange world at that point where I could hear the clapping and the paramedics coming upstairs through the haze of my pain.  But now I think of it from the other way round it probably was really quite upsetting.

Anyway that seems to put a damper on things. I’ll have to find something tacky to say about lacking hormones and how we all start as foetuses with our genitals inside. Then males get all testosterone’s up and turn theirs inside out. Seems foolish somehow to put something so precious on display. But that’s males for you. Will this get past the moderators? Have I offended half the community? Is Norberry still talking to me? Do I have too much time on my hands and strong painkillers in my veins? How long can I keep using that old chestnut? 

As if I wouldnt speak to you daloni, especially now you have made clear where all my male troubles started. I think you have given me a good excuse for all my failures in life, all down to me turning myself inside out. I dont even remember doing it!

I do worry though that I can be taken seriously and I must consider before I post.

I don't  think I was like this until I was stuffed full of lady hormones so some of the blame must be directed to the female psyche. Mind you a large daily  helping of lyrica and citalopran does seem to colour my perception of the real world.

I need to hear of pain free improvements from your current abode? Xxxxx

Perfect!  I’m pretty sure that chocolate cures .... a lot, maybe not everything, but chocolate is a key ingredient to one’s health. 

Thinking of you.  Hope that your team and the hospital are continuing to take good care of you.  

Xxoo

Hi Everyone, Oh Daloni, I don't ever see the day coming when anyone would not speak to you! Norberry what's happening in your house!! We will all vote for your wife to be an MP, does she wear the pants now? (Paper or otherwise!). Lass now do they not say if you read or hear a word said wrongly it's got something to do with what's on your mind at that moment! Well, now we all know what you have been thinking about...&..it's not plants! Lol! Alive I hope your experience with online shopping is better than mine was! The first time was the first Christmas after dx, I thought I would be smart and order everything I wanted online, trouble was I ordered it to be delivered on New Years Eve instead of Christmas Eve! The second time was in January, out of 14 items I wanted, 5 were delivered, the other 9 were replaced as they were out of stock. But in place of a tub of Walls Soft scoop ice cream I got a box of 8 small Split ice lollies, instead of fresh strawberries I got a punnet of grapes, instead of fresh raspberries I got a bag of oranges, instead of meringue nests I got a bag of marshmallows instead of a tub of fresh double cream I got an tin of skooshy cream ( which disappears two mins after put on the plate! Now you try making an Eton Mess with these substitute goods! Good luck Maggie!

Oh sorry Daloni, hope this didn't make you hungry and that you are settling down for a good sleep!

Take Care ALL Stay Safe

Lol anndanv

I've not thought about vibrators or sex for a long time. Good old hormones, both the thyroxine and provera, have killed off any thoughts along those lines.

Lass

Xx

Hi Folks 

The steroids are doing their job and I’m here again with insomnia. I spoke to the palliative care nurse yesterday afternoon and she suggested taking the whole 16mg in the morning rather than as two lots. 

She also said they'd had contact via their consultant with either UCLH or Guys, she wasn't sure which, and they advised agajnst an MRI scan now. Said there was no cause to suspect a fracture at this point so act as if it’s not unless my condition indicates otherwise. Hurray!

So the plan is now five days on steroids (backdated to friday) while weaning me off the syringe driver. They want to replace the syringe driver with patches at the lowest tolerable dose and get me home. 

To do this, they've upped the steroids from 8 to 16mg, cut down what's in the driver and increased what I can have as a top up by mouth. If I don't need to top up they know what's in the driver is adequate. I’m not being a hero but I’m not being a whimp either and I can report that I had the last oxycodone top up yesterday mid morning. I didn’t need it at bedtime and I’ve not woken in pain now. 

And I made it to the en suite and back without needing to cry just now. I am pretty sure a trip to any vending machine would be a different matter, however. 

So I guess the dose I’m on is good for now for staying in bed but I don't think would be enough if I actually wanted to move around. I'm improving every day, which is brilliant. We are getting there.

I'm definitely in here until Monday, when I'll see the consultant. I really hope I might start to be on the way out after that. Could I hope for the middle of next week? I really hope so.

Moving to the hospice for the final stage is still on the cards. I guess it depends if they have space as much as anything. I'd be happy to do this for the cake alone but also to test out what it's really like there. I'm hoping to start the advanced care planning with the nurses at the hospice soon. This would include things like DNR orders and where I want to die.

Everything could change again, you know how it is, but this is where I'm at now. I'm optimistic.

In even better news, the chocolate situation has been remedied and my big girl is home.

My twit of a little sister has some explaining to do, mind you. You may recall a friend had dropped off a bag of chocolates for me. My sister had packed a couple of items with a bag of essentials and dropped them at hospital reception to be brought up. She packed the bag of Maltesers and small box of Celebrations (both gone now) but kept back, I can hardly type this you are going to be so shocked, the Guylain Seashells and, wait for it, the Lindt Lindor balls. What was she thinking? She was apparently heard to mutter “I’d like some chocolate too”. Go and buy some!!!!

My big girl is having the collie wobbles unfortunately. She’s been holed up in her university halls with one other girl for four weeks and I can only imagine the intensity of it. The capable, strong, together young woman who left for uni in September has returned a snowflake. I’m not really being fair here. She’s scared and would really rather not be coming home to a sick mother and her younger sister. I do understand. She’s also been through some very tricky times with her mental health since going to uni. She doesn’t want to be in charge at home. I’ve told her she isn’t and doesn’t have to be either. But I do need reliable arrangements in place for her sister, two cats and the dog and back up for me while I get back on my feet. If it’s not her, that’s ok and I won’t judge her for not being able to cope, but I’ll need to make other arrangements. My big sister is going to come down for a few days to support both girls. She’s very sensible. I’ve made calls to a couple of my most trusted friends, both also trusted by my girls. 

I know I need to sit back and let others take over. I think I can do that now. The safety net is in place. 

Thanks for listening to me offload all this. It’s really helped me to get it straight in my head. I can see our very dear and much missed Millie hitting like on earlier posts in this discussion as I’m typing now. Nearly there, Millie! 

xxxx