How do you discuss terminal cancer

Hi Bramblejoo

My husband had been accepted on trial but dependent on certain criteria/results was due some tests this week coming but has been admitted to hospice to manage nausea as not eaten for 10 days, so trial is pending. We just feel nothing ever works out. He also had 9 lt of fluid drained so lost 8kg on top of weight loss due to nausea, he just looks so thin and sad. I am the same at nighttime I constantly check him so no your not mad. Things still sound hopeful for you, we mustn’t give up I try really really hard to remain positive but I have to admit I had real swear out a couple of days ago all to myself, I then wiped my eyes washed my face and put my ... I’m back in control head on. It is such a roller coaster isn’t it? I really do hope you get bit of good news. Keep in touch.

Much love

Lee Bop

Hi Lee Bop,

Im so glad your husband was accepted for a trial and hope that things progress well with that, and quickly.

How have you found the hospice? Who referred him? The reason I ask is that my husband is now struggling to eat, he manages the odd bit  here and there but not much and also keeps being sick. So I am worried what to do next. His energy levels are dropping more and more each day, he is so weak now it’s awful. And we don’t really hear from anyone on a regular basis so are just left to our own devices to a degree! 

My worst fear is that by the time there is any option for either immunotherapy or chemotherapy he will not be well enough to do either, he has declined so much in the last few weeks.

Take care all and keep the chat going, it helps so much xx

Hi everyone,

I haven’t posted for a while, My husband has been in a right old mood not sure what bought it on well I probably do this horrible disease but he seems much brighter this week. I guess it doesn’t help that we haven’t discuss what we both know what will be the outcome.

Bramblejoo sorry to hear your husband had to go into hospice hope he is improving and hopefully will be able to go on the trial. He is really going through it I guess none of the anti sickness worked for him.  It does a person good I think to let off a bit of steam sometimes. I often have a rant to myself life seems so unfair doesn’t it. I sometimes think I might go mad hospital told my husband he will have a scan soon the though of results if I allow myself to think of them makes me feel ill. 

Hope and Strength to all

Hi Bramblejoo

Our husbands symptoms are the same, the process and push to get medical attention is quite some fight, we didn’t actually realise that until he went to Marsden in October it was the first time he had been physical examined since diagnosis! Anyway, he hadn’t eaten very much at all for a couple of weeks then started sickness and feeling awful so st his request phoned our out of hours Macmillan advice line who said to call an ambulance. The ambulance crew were great and spoke to advice line nurse who said he would like him taken in, in for 2 days ... I am going through this drawn out event as it is relevant to the process to hospice admission... still feeling poorly 3 days later spoke to our nurse specialist at McMillan and palliative care team at local hospice and pushed to get him in as he needed stabilising. The hospice are brilliant, I have had to get my head around medical care and hospice care, the really good thing is you can go in and visit which is reassuring for both of you. I can only suggest don’t leave it make some calls and get him the attention now before weight loss becomes another obstacle.Let me know how you get on, ask me anything anytime it is so important to have this communication and support for both you me and others.

Lee Bop xx

Gosh LeeBop, I can’t believe how similar issues we have with our husbands illnesses! I’m so glad that you’re getting good help from hospice now though. It’s worrying not knowing what to do for the best sometimes.

our hospital Macmillan nurse ha now referred my husband to our local hospice so we are just waiting to hear from them. They will have as much or as little involvement as we want apparently and can help with symptom and pain management. So I am feeling relieved about that.

As far as weight loss goes, my husband has already lost well over 7 stone so he doesn’t have much left to lose bless him. We have ensures for him to drink now though so he’s back on those at least.

How are you all coping? Sometimes we get so consumed with taking care of our husbands/wives we forget to always take care of ourselves x

Hi me again Bramblejoo

Firstly I have to say our chats are really supporting me and helping me through a very difficult time. We are at the point of having to absorb acceptance but It’s bloody hard and I’m not really ready. Hubby is now waiting for yet another CT scan to see if progression of this wretched diseases which is causing his nausea and being unable to eat and carry out other bodily functions. We are hoping he can be made comfortable and come home next week which I am so excited about and our children as they haven’t been able to see him. I feel selfish as I want a lovely Christmas memory it’s not just for me but for everyone. As you say I haven’t got much time for me at the moment but will ease if he gets home. I feel horrible that I can’t write anything cheery I am speaking to counsellor today so onwards and upwards and I am going to make a point of smiling every day. Keep me updated.

Fondest Love

Lee Bop

Hi Lee Bop,

I feel the same, it’s so nice to share with others who totally understand and are going through the same issues. Please let us know how the scan goes.

Dont feel selfish about wanting a nice Christmas, I’ve actually posted this very same comment elsewhere online. I want him to be okay for Christmas as we have a new grandson and also so that future years for me are not overwhelmingly sad forever more. I love Christmas and last year was awful with his diagnosis xmas Eve, this will not be great, so by hook or by crook I’m determined to make something of next year whatever happens. Never give up.

good luck with his scan and I so hope you get him home soon xx

Hi 

I hope you all managed to have the best Christmas you could, we went into tier 4 so couldn’t even go to church with grandchildren for nativity the first one missed since mine were little. It is with a heavy broken heart that I need to let you know I lost my darling husband just before Christmas, my boys moved in and we had the best time we could. I hope we can still keep messaging as I can’t even start to say what support these chats have been as we all understand one another. I really do wish all of us a better 2021, enjoy every moment it is all so precious Love to you all

lee bop xx

Oh Lee Bop,

I am so very so to read of the lost of your darling husband, what a rollercoaster of a journey that you have travelled over the past months.  To see that your boys came home and spent Christmas with you is comforting, and for you all  to have managed the best time that you could lightens my heart.  I send you my deepest condolences at this sad time.

Continuing to message with those here who have been such a support is definitely a way of helping you through the next few months... I am not sure if you have visited the Bereaved Family and Friends Forum  yet but I hope you will find a great deal of support and understanding there if you choose to join.

Once again, I am so very sorry for you loss. Thinking of you

Lowe'

Dear lee bop,

I’m so sorry, I can’t think of any words that measure the overwhelming grief you must feel but I hear to listen, if you need an ear.

budge xx