Hello

Hi Sanj 

Welcome to our special family. It can be amazing how typing on here can help us feel more connected and the advantage that we can each do it at a time that suits us. Sometimes of course it can help to talk to someone on the phone too so if you feel the need remember you can ring the helpline here too.

Do post anytime as someone is always listening and many never get over that first step of putting up a first post. I know I was late in my journey before the first time I asked for help but I have found it really true that a trouble shared can be so helpful.

<<hugs>>

Steve

Thank for your reply Steve very much appreciated. 
I am a year into this journey and now I’m asking for help!  
I have felt very isolated and alone.  No oncologist interaction since his diagnosis and I had a bit of a meltdown yesterday on the phone to my local doctors surgery, embarrassingly.  

sanj

Hi Sanj 

You were quite quick compared to me, still I have been here for 7 years now so just a little bit more experienced. We had an excellent blog on loneliness written a little while back see here.

I know with our journey it sometimes seems the only time things move on is when we have had a meltdown. With my own health issue at one point it seemed like I was being pushed from pillar to post by my hospital and I was reduced to tears. Went and spoke to my GP who said he would be happy to write to the hospital but he feared they would ignore him just as much as they ignored me - perhaps surprisingly that was the best thing he could have said because then I new the answer - PALS - sorted within 2 days.

<<hugs>>

Steve

Hello Sanj - my husband has liver cancer too. He was offered a course of immunotherapy but after two treatments that was put on hold while they tried to stabilise his bloods and reassess his medication. It meant a lot of ups and downs which I found the hardest to cope with. Trying to be positive for him while I was struggling was hard. Fortunately they are giving the immunotherapy another go and he re-started treatment yesterday. I still find it hard to be positive and almost daren’t acknowledge the good things fearing they will be taken away again. Rambling away on this site has helped me so I hope it will be the same for you.

Hi MrsJp

thankyou so much for your reply. 
I hope the immunotherapy will work for him this time.

I’ve found it hard to be positive all the time too and I’ve kept a lot from him.  Steve’s always been a glass half empty kind of person so telling him the truth would be really detrimental for him.  There is no treatment for Steve as he wouldn’t be strong enough. He was given 6-12 months about 12 months ago and I can see him starting to deteriorate more over these last few weeks.  He now has fluid on the stomach is hardly eating and sleeps a lot.  
however you shouldn’t dismiss the good things, I’ve taken everyday as it comes.  Good things may be taken away but we can dare to hope for better.  

sanj

Hello,

I also am such a positive person, I’ve not had tears for a month, but tonight I couldn’t help but have a little cry.  My husband I feel is showing signs of change, he’s been so amazing after his chemo. Something has changed and I am concerned. Scan coming up next week, always nerve wracking. This is so hard for those with cancer and loved ones around. 

Aww sometimes it’s good to have a cry (on your own without them seeing!) lol.  
I think the sign of change is the hardest thing to cope with.  For me it’s now inevitable that this is real and I am going to lose him.  
I will keep my fingers crossed for you for next week and hope that it’s good news. 
Sanj

How are you doing today.  

I’m doing a lot better today, I have family around so it is distracting me. How are you ? 

I’m good after my “meltdown” on Thursday thank you.  Maybe I needed to get it out of my system. 
Have  a good Easter weekend, thank our blessings and take each day as it comes.  That’s all we can do x