Bad news

Hi Gang

Well I had the radiotherapy and then it all went tits up. I’m writing from a hospital bed. 

It started on the journey home from Guys when my sister had to swerve onto the hard shoulder of the A2 so I could puke out of the car door. Got home and then the pain started. They call it a radiotherapy flare up which sounds a bit like a fire work and oddly enough is what it felt like too. But not in a good way. Unremitting, extraordinary level of pain and nothing I could do except lie with it, shouting and/or crying. My poor sister and daughter could only watch. 

We called the hospice nursing team, the on call oncologist at Guys, and NHS 111 who sent an ambulance. It arrived as my neighbours were cheering the NHS. We worked hard to control the pain at home but it became clear I needed to be in hospital so off we went. 

The first doctor was fab and whacked me up with alfentanyl, which he described as “fentanyl on steroids” and morphine. The next doctor was equally wonderful and started me on a syringe driver. 

I’m still getting hideous break through pain and we are managing that. It feels like I’m on the right path but definitely not there yet. The palliative care team has been in to see me and they are taking over the prescribing. I’m definitely here for a few days but they may discharge me to the hospice as it could take two weeks for this flare up to flare back down again.  It’s a much nicer environment to be, I think. It has a lovely garden onto which the rooms open. 

My sister stayed with my little one last night and my big girl is on her way home from uni today. Either of my sisters can stay with the girls but I’m leaving it to them. It’s important that they have some sense of control. I think my little one is traumatised. Can you imagine being 16 years old and seeing your mum like that? Poor lamb. 

So that’s my latest big adventure. It really wasn’t in the plan. The radiotherapy was supposed to help the pain not magnify it a thousand fold. 

On the upside, the nurses are great here. I’m in a side room with an en suite and view of a wood. The food is truly dreadful, however, and my sister failed to pack any chocolate for me!!!!!!!

I hope you are all having better days than me 

xx

Oh God, . I wish there was some way I could help, something useful I could say. But I have nothing.

I guessed things hadn't gone well when you didn't post yesterday, but I never imagined this. To be honest, I've never heard of this.

My thoughts, and every positive vibe I can generate, are with you and your daughters. I hope that the hospice team can bring your pain under control quickly, and that they can help the girls, too.

Love,

Xx

Hi Daloni, all I can say is that I am so sorry to hear you are back in hospital and in pain. I really hope that everything will soon settle down again and you will be back in your own bed with your girls to keep you company. Do as you are told for now and feel better soon.

love and hugs

Maggie xx

O blinking hell I was really worried when you said how much RT you were going to be having. I know you are made of strong stuff but I would have died of radiation burns. You need to be looked after as we all know things can get worse before they get better so I am glad you are in the right place. 

I am sending every wish a have that things will improve quickly and in a short while you and your family will be thinking it was horrible but worth it. 

I have not heard from my oncologist about my last scan but the Pallative care nurse said today she has a copy of it and she is reading it as I have a chest infection. As always she pointed out she is not a doctor and wants to clarify things. If it is not the Cancer growing and the infection can be treated that seems more positive to me. Not enough to get me out of my PJs today though, which is very unusual for me. Not sure how much is because I feel awful and how much is because I am being lazy. What the heck.

Take care and rest as much as you can 

Oh s**t Daloni.  What a time of it you are having.  I’ve just said a wee prayer for you.  I so hope the flare up pain can be controlled and that you gain at the other end when it settles.  Thinking of you and your family too, they will be so worried about you xx

I havent been on the site for a while and I am just reading about the horrible time you are having. I have no words other than to say I hope you get your pain under control as soon as possible and you can get back to your girls.

you are a very lovely lady who supports others no matter what you are going through yourself. My thoughts and best wishes are with you and your loved ones xxx

Thanks so much. I’m sorry I just can’t reply individually. I’m on so much morphine I can barely string a sentence together. 

I’m in PJs too. Have we now reacted the time we talk not of sofa days but PJ days? At least we will each know what the otter means. 

I am feeling very loved, not just by you, my wonderful on line friends. One group of girlfriends just sent me a hilarious video they put together featuring lovely things I’ve made for them over the years. African print trousers, crocheted wrap, bunting. It ends with them throwing a toilet roll between them at their different locations. 

We had to cancel the move to Norwich. I think I mentioned it? I’ve just had a bunch of flowers delivered at home from the buyers I had to let down. People can be so kind  

xxx

Hi ,

like I was worrying about burns which can be bad enough.  I hope things settle down quicker than they expect and it does eventually help you with the pain.

I think you have done remarkably well to be able to reply and reassure us, I slept for a week when they increased my pain meds and I'm only on a fraction of what you were on before.

People are lovely and it is probably a good thing that macmillan don't let you put personal details on here or your home would look like the glass houses at Kew gardens with flowers from the members here.

I do think that you do need to plan a bit more around your chocolate cravings.  Perhaps a chocolate ready bag (with combination lock to stop sisters and daughters pilfering) left ready to grab by your front door as you head our.  I would suggest at least two weeks worth as you know how slowly time goes in hospital and how in need of treats you get.

I hope that they can get you to the hospice as the pain management skills, the views from the rooms and what must be an improvement in food can only help.

Take care.  With love and big hugs,

Gragon xx

Holy shit that sounds truly awful.

I had tumour flare after gamma knife surgery but not as dramatic as that. I couldn’t make it upstairs to bed so spent a few nights on the sofa with ice packs on the most painful areas, there were a lot of tears. I was told it was a positive sign, an indication of a good response to the radiotherapy, (I think that was anecdotal) and was given steroids to help with the inflammation.

What a shock for you all. I hope you’ll soon be at home and finally pain free.

xx

Daloni, you have got to get a bit better soon, I am worn out just reading about your latest test of NHS staff, medicine and your poor family. 

I always think you are better off in hospital because you are surrounded by nice people who know their onions.

I cant believe you are in a no chocolate situation, every bit of your clothing that has a pocket should be bulging with whatever you can stuff in there! My wife is never to be found more than 2 feet from a bar of something, something to do with government distancing rules she says!

I so hope you can get some pain free peace soon. Xxxx