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Hi Welshy82

Sorry to hear that your boyfriend has terminal cancer.  I would keep on at his GP to get palliative care nursed in for him until he does something about it.

Hope this helps.

Best wishes

Daisy53

Hi daisy I have tried again today with no luck it's so frustrating because no one seems to care about him actually I'm shocked its been 9 months and he's not had one bit of treatment it's only McMillian that's shown any interest in helping us x

Hi welshy82  So sorry to hear your boyfriend has terminal cancer , Could you ring the consultants secretary that gave him his diagnosis and tell him the situation,  or better still ask your Macmillan nurse to contact them  , also I am sure Macmillan can contact your local hospice to arrange support,  its must be heartbreaking for you both going through the worst thing that life can throw at you and having no support , also contact your GP they have a duty of care , our Macmillan nurse has been amazing getting medications ,counselling  and generally looking after my hubby's wellbeing,  I truly hope you get the support you both need .sending hugs x

Hi thank you for replying his consultant is worse he doesn't want to see him again he's referred him to Manchester but Manchester won't see him unless he has a biopsy the nurse I spoke to yesterday doesn't understand why he needs one because it's pointless and sadly his nurse in Leeds is no help she left me a voice message telling us not to phone them McMillian has been the only ones that have shown they care I have always been so supportive of the NHS I just feel let down by them it's 9 months now if they acted sooner he wouldn't be dying xx

Hi Welshy82

Would consider complaining to PALS about the way your boyfriend is being treated? You would be perfectly within your rights to complain about the way he’s been treated. I’m glad to hear that you are getting support from Macmillan they are so good at it.

Best wishes

Daisy53

They are fantastic I never gave it a thought that no one would help him his GP has looked after him for 30 years it's not right I sent them an email last night I don't want this to happen to anyone else it's unhuman x

Glad to hear that you sent them an email. As you said it’s inhuman the way he’s been treated. x

Hi Sarah, it is inhumane to treat a person like he's being treated.  As others have said contact Macmillan to ask for more support.  You say Manchester hospital (?Christi's) won't take the referral as he's not had a liver biopsy?  So the diagnosis is just from scans only?

They cannot ignore you, your boyfriend's oncologist or the doctor who diagnosed him needs to speak with you both and explain what's happening.  Try the doc's secretary, you can access that through the main switchboard and persist.

Contact PALS tomorrow to start the ball rolling re your complaint too if you're up to it but firstly concentrate on chasing answers, PALS can maybe help with that too?

Good luck and stay strong x

Yes he's had scans and ultrasounds that's the thing I have a problem with the picked up cancer in December after a routine  scan the first doctor he saw said that the operation that Leeds wanted to do wouldn't work and he thinks chemo was the best option but they didn't listen to him sadly when they eventually brought him in to have it removed 4/5 months later it had gone to 8cm and gone into his portal veins he had a special scan the next day and sent him home and a week later he phoned him and told he is dying and said they didn't want to see him again and then Manchester said they won't see him until he has a biopsy but he was told years ago it's not safe for him to have one I have sent pals an email if I don't hear back of them tomorrow I will go in it's only up the road from me I even phoned Manchester me and begged for help it's heartbreaking because all he does is sleep and it scares me because I lost my mam to cancer a few months ago and she went the same way before she died x

Hi, my heart breaks for you.  It must be a terrible time for you both. Plus you are still in shock from your mum dying.  Please contact Macmillan locally again and have them start your boyfriend on the palliative care support pathway hon or contact your local hospice community team and they can visit asap.   It was so unfeeling to be told you are dying over the phone, I can only imagine how horrendous that must have been for you both. You both need care right now, no time to wait.

To be really honest and upfront time is so important right now as obviously curing or treating the tumour is not possible.  Most people who die of cancer, not all, have a period of sleeping more and more as their body tires of the disease and various organs begin to shut down.  The liver is a vital organ of the body, it helps to clean the blood so when it's not able to work properly toxins can build up in the bloodstream making the person more tired, possibly confused, itchy skin, pain possibly, irritable, nauseous. Community palliative care will be to give him meds to relieve any symptoms and emotionally support you both.  They can also advise you on any physical care support your boyfriend may need.

I really hope nothing I've said is too open or shocking but you are obviously aware time is short. Be with him as much as you can, time is so precious.  I'm so sorry that you have had such a short and shocking time especially with such poor and segmented care.  PALS will help you I hope in continuing with a formal complaints when you are ready to do it.  

I really hope you can obtain some help quickly for you both and that your boyfriend is comfortable and peaceful. 

Contact Macmillan on here too as they provide good advice re PALS plus can advise on how to quickly get home care for your boyfriend.  Lots of love to you and a huge hug xxx