Didge Posted June 19, 2015 Posted June 19, 2015 Having not posted for a while, my darling has been in a lot more pain since his radiotherapy to blast one tumour, having had the other ablated. The latest scan shows that there are now livers tumours in every section of the liver so the prognosis from last summer of this July (I know they are only averages) looks horribly likely. We are both hoping we get to celebrate our big birthdays next month. Sorry that the run of good(ish) news has come to an end. In a lot of cases, chemo is like poking it with a stick and makes it more aggressive, which is what has happened to us - others find it keeps it at bay for a long time. If only we knew which was which! Hopefully individual treatments will not be too far off and we will know then for sufferers in the future. xx
jay Posted June 19, 2015 Posted June 19, 2015 Ah Didge, Im so sorry, sending you an enormous cyber hug, this pc is unrelenting,Thinking of you both, hope they can sort the pain out.love Jaynexx
Guest Posted June 19, 2015 Posted June 19, 2015 Didge, Really sorry. Something else so horrible to read. They said this is what happened with my Dad. Dreadfull. What happens now then? What are they going to do for him? How is he feeling, and I know that is a stupid question and I'm sorry I couldn't word it better. Leila xx
Didge Posted June 19, 2015 Author Posted June 19, 2015 Thanks both. My dear Leila, it is not a silly question - he is feeling shellshocked - the pain is largely under control at the moment and he is going to get himself hospice sorted out. I am heartbroken though, even though I knew it would come soon enough. Having trouble holding every thing together. we were talking with the oncologist about how unrelenting it is and it seems to outwit everything which is thrown at it.Lots of love to everyone xxx
Guest Posted June 19, 2015 Posted June 19, 2015 Oh Didge, I really am so very sorry. It is so horrible to hear the words that chemo hasn't worked and anymore isn't an option. It's like, what do we do now. Where is your boyfriend now? Where are you? I know there is a distance between you. I read on another post that he has young children. How do you even process something like this? Life is cruel. They seem to pick up for a while, and then have huge shitty knock back. Wish I could say something, but I know there is nothing. Just please keep posting when you can. We are all here for you.Leila xx
LMD Posted June 19, 2015 Posted June 19, 2015 So sorry Didge.Thinking of you both - there's nothing that can be said to make it any easier, I know, but please know you're not alone... X
Didge Posted June 19, 2015 Author Posted June 19, 2015 He is here with me until tomorrow. there is a chance he can go on a developmental drug trial - we will know in a few days if he is well enough. Otherwise he wants to try folfirinox again which they have agreed to - unfortunately, it will probably kill him, but he wants to try. Thanks all for your support x
Guest Posted June 19, 2015 Posted June 19, 2015 I hope he can get on a trial.I really understand him wanting to try. When they told Dad he had broken bones in his spine, Dad said " I don't care about that, I want my chemo". It makes it all the more heartbreaking. Your boyfriend has been through so much, and he's always wanted to try. You never know, there is always hope. What else have we got?Leila xx
sandraW Posted June 19, 2015 Posted June 19, 2015 Didge,I am so sorry to hear your news, but it is good that there is the chance of more Folfirinox, as is it Rob? did well on that the last time, and the chance of a trial is good news too.Just remember we are all here, for you, and keep looking forward to those special birthdays. sending you love and strength sandrax xx
Go green sue Posted June 19, 2015 Posted June 19, 2015 Didge, I am so sorry to read your bad news.I have not been a regular on here but you were the first to support me when I first posted.Sending you both massive hugs and hoping he is suitable for the trial.Keep us informed how things go.Love Sue H
EmmaR Posted June 20, 2015 Posted June 20, 2015 Oh I 'am so so sorry to read your post you joined the forum a month after my hubby of 51 years passed away 8 weeks after diagnose! and I have followed your posts with hope that things would get better but unfortunely as with a lot of forum members the prognosis never seems to improve some on here are the exception but sadly not many so having walked the path that you make be takeing in the near future all I can say is for now love him to bits and be strong and know the forum family really do know what you are going through ..... Thinking of you EmmaR xx
WilliamS Posted June 20, 2015 Posted June 20, 2015 Sorry to read your news Didge. Similar to Sue H, you were also the first to support and advise me when my Dad was diagnosed in March. Thinking of you and fingers crossed your bf is accepted for the trial.
Sueoliver Posted June 20, 2015 Posted June 20, 2015 I am thinking of you Didge . Also going through tough times at the moment! Stay strong.Love Sue x
nikkis Posted June 20, 2015 Posted June 20, 2015 My lovely Didge,What can I say, this is all so blinking awful and unfair. I really started to hope that Rob could be one of the ones to beat this. Paul also wanted everything they could possibly throw at it, even if it made him worse, and why would you not when you have so much to live for? Not everyone understood that, but it is a decision that I have never regretted. If you ever want to get in touch, please ask Jeni for my contact details. I really hope you get to celebrate those special birthdays,Lots and lots of love to you both,Nikki
RLF Posted June 21, 2015 Posted June 21, 2015 I'm sorry to hear this didge, my thoughts go out to both you and rob. Glad his pain is being managed better and I hope you manage to celebrate both your birthdays Xx
Didge Posted June 22, 2015 Author Posted June 22, 2015 Thank you everyone. A little better yesterday, we managed a couple of drinks in the pub. Yes, Nikki, I would love to have your contact details. And anyone else who wants to contact me, please do. xx
jay Posted June 22, 2015 Posted June 22, 2015 Glad a little better yesterday and u had a couple of drinks. Jenni has my e mail address if u want to get in touch. Thinking of u both love Jayne
kittycat Posted June 23, 2015 Posted June 23, 2015 Didge, I can imagine what you're going through and I'm glad things are a little better at the moment. I agree with what you say about chemo seeming to poke at stick at things but keep trying to think positive. Look after each other!Sue
Slewis7313 Posted June 24, 2015 Posted June 24, 2015 Didge, I am like everone else here so sorry to hear about the latest update. I hope the Fox will help and give you both a little more time. Also glad to hear that the pain is under control. The Hospices are amazing places and will no doubt offer additional advice and assistance. You are such a great source of support on this amazing forum and I my thoughts are often with you both.Take careSteveX
Didge Posted June 24, 2015 Author Posted June 24, 2015 Thanks, everyone. We are waiting to see what the development drug trial possibility is on Friday. And, Steve, I believe it was happy birthday to you for yesterday? Hope you had a lovely day.Didge x
Bryansie Posted June 25, 2015 Posted June 25, 2015 Hi Didge,My thoughts are with you, I am so sorry that the chemo has not worked, your sad news has given my brother the understanding he wanted, he declined chemo as it is iminent what the outcome will be.Once again I am so soryy, I hopeyou can take a little comfort from all of us here.Sue
Guest Posted July 5, 2015 Posted July 5, 2015 Hi Didge, Just wondered how Rob was doing and what was happening with the possible trial?Hope you are getting by ok? Leila xx
Cathy Posted July 5, 2015 Posted July 5, 2015 Hi DidgeMy first time on here for ages and feel desperately sorry about your news.I'm crossing my fingers very hard for you both that the trial can start and goes well. I know how tough all this is.Take care DidgeCathy xx
kittycat Posted July 5, 2015 Posted July 5, 2015 Hi Didge, wondered if you had any news yet. My thoughts are with you - what a dreadful disease this is!Sue
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