Chemo

And a big hug right back to you

xxx

Fingers crossed for a pain free positive outcome Daloni.

Hope the chocolate situation improves.

Xx

Hi

the chocolate situation did indeed improve. A dear friend of my niece’s who lives in east London set out from home to bring a fabulous care package containing five bars of Green and Blacks butterscotch milk chocolate, a big box of Maltesers, a newspaper and a book. Bless him. 

It was the perfect antidote to a difficult day. It started with a planning scan for the radiotherapy to my spine. It’s incredibly painful for me to lie flat - and scanning requires me to do just that.  I’d talked to the nurses about taking some top up pain medication before the scan but the porter sped me out before I could stop anyone to ask. The scan was an ordeal. 

Then at 4pm, the young radiologist came up to the ward looking worried. They’d reviewed everything, he said, and while they could safely zap my spine, the resultant zapping of my organs would be outside safety limits because of all my previous radiotherapy. It wouldn’t be safe. They would send up the pain team to talk about a nerve block instead. 

I’m in two minds about this. On the one hand, no one could reassure me I wouldn’t have another radiotherapy flare up like the one that put me in hospital for a week in April. The radiographers assured me I would definitely have more pain before I had less. So not having it was a relief. On the other, the radiologist sold me the idea of going through with it on the basis that the tumour, left untreated, has the potential to paralyse me. It will grow and it will cause more pain. So not having the radiotherapy feels like a risk. Either way, the choice is out of my hands. 

Also during the day I saw my oncology registrar. My consultant has ordered a full body ct scan so we can decide on whether to continue with the chemo. That would definitely happen yesterday. I’m still waiting...but it is ok. 

I saw the palliative care team who reviewed my pain medication and added a medication to help me move. It dissolves under the tongue and I can take it ten minutes before I need to be mobile, eg to take a shower, and it should give me an hour to move around. 

I also saw the OT. She can help put in a home care package for someone to clear up after breakfast and make lunch. It’s a good start to having people in the home. I’m not ready for help with dressing and washing just yet and I don’t want to cut across what my younger daughter should be doing if things were normal. This feels like a good compromise. 

So while these were great visits and I really couldn’t ask for more, each one required me to confront the uncomfortable fact that I’m really moving towards palliative care that will help as I become increasingly dependent on others and to accept that pain will be a part of my life. All I can do is manage it. 

A huge part of me is grateful I’ve got all this support. But I’m scared too. And sad. So very sad. 

xx

Me with chocolate. I ate one bar immediately 

Well Daloni, Trying to hide that smile behind the choc bars didn't work, your eyes gave you away! Boy do you deserve the choc your visitor brought! I know what you mean about the underpass to link the hospital from the cancer hospital. We have one under Gartnavel Hospital leading to The Beatson West of Scotland Cancer Hospital and summer or winter it is freezing with bare walls apart from all the pipes. It always seems never ending and very eerie too! What a lot has happened but at the end of it, when you get home maybe at the weekend, I hope everything will fall into place and you will be relieved and glad to be home! Do the orderlies in the hospital not volunteer to go to the shop for you, the same as they do here? Maybe it's to do with the virus, the service might have been withdrawn for now! As soon as you get home, get someone to bring a box of choc for you! Take Care 

Georgette  I hope your chemo goes smoothly today with no hiccups and definitely proves that unfeeling Prof wrong! Good for your oncologist!

 How clever are you!!! Resting all the way there and all the way back so you would have a great time in between without being exhausted!! That's forward planning for you!!

Love to ALL 

Oh !

I am so, so sorry to hear the news. Do not know what to say, you are a warrior. And you have been so brilliant.
you have just shared some hard news and hard choices. So much to unpack and process. 

I am very sad. Wish I had a magic wand that could make this go away. All I can think of saying is that I am here for you,  and we are here for you. 
xx Gentle Hugs,

Millie

Daloni you are the complete warrior not just to yourself but to each and everyone of us on this site you are so inspirational with advice your sense of humour kind words always there for everyone you are our  leader we all turn to I always think I have a personal connection to you as you were the first person to contact me on that terrible night when I could see no way out except one way it is because of you firstly that I am still here and then everybody else followed to help me with so much support that I needed and continue to receive today you have me another chance to fight on and because of you I help as many people out on here with my weird copeing ways and anything else I can help with the feeling of getting a response back that I have helped in a small way makes me not feel so useless and it gives me a good feeling that I have achieved something helping someone else out so keep fighting on and I really hope the hospital can sort your pain relief out and everything else we are all rooting for you on here and we will all give you the support and love that you deserve here is a massive hug from all of us on here xxxxxxxxxxxxxxxxxx

Hello daloni, this is all unhappy news but they and you appear to have plans and options.

All it takes is these to come together successfully and you will be back with your A team at home.

I know you know your onions, medically wise, but a bit of luck mixed in with your care will swing it.

You can probably feel all your friends rooting for you, that's a lot of friends and a lot of power.

Hi

There's not much I can say that others haven't. I want to wish you all the good luck that's going for your next treatment. 

Take care Daloni and of course stay safe.

Tvman xx

Hi gang 

how nice to open the community to such an outpouring of love and hugs and good wishes. You’ve quite buoyed me up. 

Popgate Flippen - we wouldn’t, couldn’t, be without you. I do think we have a connection after that awful night. Enough said. Let’s not go over it again but recognise we are here now, holding each other up. I’ve got an image in my mind of one of those old fashioned newspaper cartoons of two old ladies, maybe with walking sticks or frames, leaning on each other and a park bench and saying to each other “to me, to you, to me, to you”. 

Funny what the mind conjures up, eh? 

Georgette I’ll be thinking of you today. Will you let me know how it goes when you have the strength? 

I wish you all a happy, joy filled day. 

xxx