Bad news

Oh daloni I am so so sorry to hear your news, I had hoped this drug would give you some stability.  I really hope they get on top of the pain and get you more comfortable.  Your eldest will come to her senses I’m sure, once she has come to terms with things a little.

i don’t really know what to say so I won’t waffle on, just to say I am sending you my very best love, and hope you are more comfortable soon, xxxx

Oh, , I am so sorry to hear this news. Everything sounded so positive for you, so recently, I thought you had found a trial drug that was helping. 

I hope your doctors can bring your pain under control quickly, and give you back some quality of life. I can only imagine how bad it must be to bring you so low.

Sending best wishes, virtual hugs and love to you and your daughters.

You have always looked after everybody here on the forum, please save some of your energy for looking after yourself.We will all want to share your pain so as to lessen it for you.

I do so hope that you can report some improvement soon. I am sure some of your strength is residing within your daughter, I am so pleased she is with you. Xx

Hi Daloni sorry to hear the news.Its such a rollercoaster one minute good news the n bad.I hope they have sorted your pain relief there is nothing worse than pain.Sending you a hug x

Hi Daloni,

sorry to hear your news and that your pain has been bad 

I have had bad headaches and had a day near to tears and talked to my son on FaceTime and couldn’t stop the tears which I didn’t want to do in front of him.

eventually I managed to get some codeine from the GP and I am now able to cope.

i do know how you feel. If they can help you with the pain you should begin to feel better.

i am hoping to go back on my lenvatinib once I get a new BP tablet to try. It hasn’t been easy having to come off the drug again the drug does give me some hope to keep going a bit longer.

give noodle a cuddle from me.

love Ruth xxx

Hi Daloni

I have just replied to your message to me yesterday and then saw your post. 

I am so sorry to hear your news and extremely grateful that you took the time out to respond to me and give me support when you have such a lot going on with your own illness.   

I was anxious and nervous about joining the group but I think it is actually the best thing I have done.

I hope the pain killers get the pain under control and you can have the radiotherapy asap to make life a bit better. xx

Oh shit!

I really can't think of anything appropriate to say.

Sending love to you and I hope that they can get the pain sorted.

Love and hugs to you and your girls,

Gragon xx

Thank you all for your lovely messages. I know how hard it is to know what to say, so if it’s been a struggle don’t beat yourself up. I’m glad to hear from each and every one of you. 

I am feeling a wee bit better today. I managed to stand up for a shower this morning. Hurray! Then I managed to make cheese on toast for lunch. I’m having a lie down now, mind you. 

The hospice nurse rang this morning to check out how I’m doing. We think it’s time to do some advanced care planning. It’s not something I’ve tackled yet. It feels the right time. She’s sending me a leaflet to get me started thinking about my wishes. 

My daughter and I have also talked about revisiting our move to Norwich. The way I feel now, moving and everything it entails would be beyond me. I have a great GP and hospice nursing service here and that’s not something to give up lightly. 

It’s amazing how much life can change in a week 

xx

Hi

me again. I have just had my third (count ‘em) extremely vulnerable letter. The first was from my GP. Then I got one from the government. Today’s comes from ULCH. Can’t say I haven’t been warned. 

This most recent letter extends some categories (eg to include anyone who’s finished chemo in the last six months) and modifies some advice for lymphoma patients. It’s interesting to see how the advice is evolving. 

Oh

My turn to want to give you a big hug. Gosh, it's the worst part of being on this site, the horror of this awful disease never gets easier and I'm gutted to hear this; your girls must be reeling.  

Gragon is right, no good words here. 

Much love, dear friend. Your honesty is astounding, don't stop now it's getting really tough, we're listening. 

Xx