Scared & not feeling positive

Oh Modge! I am reading your post with a lump in my throat! I can really identify with your story as it is so similar to mine, I was diagnosed with liver cancer and was told I had a very short time left, just a few months and to go home and get my affairs in order as the tumour is inoperable and untreatable. I went home in shock basically and it was only after 6 weeks I could really think of all the questions I wanted to ask. My experience was the same as yours, couldn't get hold of anyone, didn't have any nurse or specialist I could talk to, the only councillor available (after 5 weeks) just wanted to discuss my end of life plan. They promised me they would not just leave me adrift but that is exactly where I was.

Modge you may not want to do this but I just got so angry at the situation I contacted PALS (the complaints body of the hospital) and layed out every last detail in letter form, including the fact that I was getting stronger and fitter every week and this couple of months I had left was over a year ago! I also contacted my mp with the story and he was ready to advocate for me, this made the hospital start a series of new tests and to cut a long story short the MDT have said I should be started on chemo very soon. It is wrong that we have to go to such lengths when we are not up to it mentally or physically.

Contact your GP and ask about counselling for you and your family, contact the complaints board at your hospital, ask your mp to advocate for you. Something should happen very quickly.

I really hope you and your husband can get through this but please don't try to do it alone, rope in anyone that can help.

I wish you the best of luck and life 

Hello

I have read Modge and your posts I'm so sorry to hear how you have been treated not sure which hospital you are under. 

But both Birmingham and Wrexham hospitals have been great with me only trouble I had at first was Birmingham never commuted with Wrexham but we got that sorted out.

Hope you both get some good news soon

Hi Henna & Barn Owl

I'm not sure where to start with my reply ! We're now 2 months on from my original post & I wish I could write that there's been improvement. The scan I spoke of in original post showed hubby's 2 main tumours had both doubled in size to 16cm & 12cm in 9 weeks growing at a rate of 2cm a month. The other various smaller tumours have also grown. We managed 1 more cycle of chemo & immunotherapy (after LFTs reduce) before developing ascites which needed draining meaning on 3rd cycle immunotherapy had to be dropped! Later we were told drainage is only done for symptom relief. Hubby wasn't too uncomfortable & had no pain so if we'd had this info before, he wouldn't have had the drainage when he did, instead, he would have rather had his full treatment but no info or choice was given. Even the drainage procedure turned into a fiasco, but I won't go into that. Since then LFTs haven't been good enough for further cycles with bilirubin fluctuating between 30 & 44. At our 3 weekly appts we usually see a 'trainee clinical assistant' but 4 weeks ago she called consultant in who said that my hubby "caused him problems because what he sees on the outside is not what the picture on the inside is" ! We were told that if there was anything we wanted or needed to do to do it now with a hope we may get to do it again in 6 months !! Again, nobody to speak to, chemo unit nurse (not very pleaant) said see GP, GP said spk to CNS but after 5mths & constant hassling, we still didn't have one. The total lack of communication between anyone we come into contact with is appalling & we go round in a circle of passing the book. 10 days ago I'd had enough & without making this post even longer with details, I spent a morning ringing around to pinpoint who 'should' be our CNS & finally spoke to her. She was very nice & had all hubby's notes although all she wanted to discuss was Hospice care, funeral arrangements & supportive treatment. We have come away (after arranging a gap in cycles working a space out with clinical assistant) for a break to where hubby grew up & to see family; the consultant has rang to make an unscheduled appt with him the day after we arrive home.....we can only think (after conversation with CNS) this is THE appt where we're told they're stopping all active treatment & only supportive treatment will be given from now on. Fluid has built up in hubby's belly again & his legs are very swollen from it so another drain will be needed but.....& we're very thankful for it, in every other respect, he feels as well as he normally does, his appetite is back to being good, he's eating normally & still maintaining a high protein diet with food supplements. We are both utterly exhausted from the weekly roller coaster f positive up news quickly followed by the negative down news. We only just process one lot of negative news & within days we're hit with more, we just can't catch a break. They say....go ,& live, but this is existing, how can you live well with this weekly fortnightly seesawing of emotions. Again, sorry for the long post.

Sorry to hear what you are going through, hope you get some positive news soon, and things don't go down hill. Will be including you  both in my thoughts and prayers.

Jackie

Modge

I can't believe how similar our cases are and the mind blowing lack of communication and information that we are given, I feel our oncologist was determined to do nothing from the very beginning when bilirubin was at a stable 40 and I was physically well and active. Even his own colleagues are astounded by his lack of motivation which I won't go into as like your story it would just take too long but to say the frustration and worry we feel is so similar to yours. As a last ditch attempt at getting any chemo treatment I have just informed the hospital trust that I need every single document recieved or sent since I was first diagnosed as we will be passing these to our legal reps.

Suddenly there are appointments being made all over the place as they try to look like they have not wasted 18 months we didn't have doing nothing. 

I know how you feel at the moment, how it all seems so desperately dark and hopeless but all I can say is this is a strange disease and anything could still happen. 

I don't know if we are allowed to exchange numbers on this forum but feel if we could then at least you would have someone that is in the same place as you that you could talk to. I will see if it is possible if you would like that?

Henna

Hi Henna 

No, I'm not sure if we're allowed to swap details either ? Even if via a social media platform? I'd be interested if you find anything out.

Modge

Try  friend request on FB 

Steve Henzell 

Look out for Janet