Malignant Melanoma & liver metastases

Gosh, LadyR, that is an awful situation to be in. I don't know either you or your husband but God does and I will be praying for some positive actions to happen very soon.

God bless you both

Thank you so much

LadyR welcome to this forum.  I'm so sorry to hear about your husband's diagnosis and consequent treatment.  He does sound poorly and you both have further questions I'm sure.  Are you able to chase up the consultant asap?  Try ringing the hospital and asking to speak to a cancer nurse specialist - they can certainly troubleshoot very quickly for you.

It's worth ringing the Macmillan helpline too for some quick advice.  Referrels do take some time but as your husband hasn't eaten for two weeks and drinking is difficult it's a concern he may get dehydrated.  His GP can surely chase things for you too and they should know about the biopsy result and need to know re his current weakness and risk of dehydration.

I wish there was something I could do for you myself to speed things up re your husband's care.  I'll be thinking of you both and wish you both some swift action on his treatment xx

Thank you, i am contacting 111 today, he cannot continue like this

Absolutely the right thing to do.  It sounds like maybe his disease is advanced and the liver is a powerful and very necessary organ of the body.  If it's been affected by the melanoma then that might change his condition rapidly.

I am so sorry you've both been put in this position, fight and shout loudly to get help now hon.  Hope 111 have moved things on swiftly. Don't let them fob you off with any excuses.  Keep us up dated LadyR, wishing you both some answers and comfort. Xx

Will shouted very loudly today & ended up in A&E and has been admitted. He has a massive infection so on intravenous antibiotics, on saline drio, anti sickness medication, painkillers intravenously. They couldn't believe he was discharged from hospital without a care plan or key worker. The senior sister in casualty cried when she read his notes, she couldn't believe how  he had just been abandoned after being given the diagnosis. Hopefully they can now make him feel comfortable. Whilst we wait to find out his prognosis. Thank you for your support. My husband said to me last night that he thought once you had cancer you were looked after!  The doctor we saw this afternoon printed off my husbands notes, we saw our GP Wednesday who I knew didn't take on board how ill her was has recorded that he was really well. 

Thank you for updating me. I'm so pleased your husband is finally more comfortable.   As I was a palliative care nurse myself I do try very hard not to come across as too medical but I know if I'd been the sister in casualty I would have cried too.  I too can't believe you were both told of his diagnosis and then left when even to me who is miles away I could tell he needed immediate attention. Well done for "shouting". 

It's just inhumane how he's been treated but if you can avoid spending time on the anger towards the medics (including his GP) right now and just concentrate on keeping him comfortable and being with him as much as you can all the better for both of you. I kept a log of all the mistakes /errors/rudeness/incompetence shown to me to reply to at a later date and felt it was more important to focus my energy on getting better.   Hopefully the oncologists will suggest some treatment once he's better from the infection hon.

Breathe a big sigh of relief that you've reached this place where he's being looked after properly, keep on "shouting" if need be and as I said before use this time wisely together.

I'll be thinking of you both and wishing your husband a speedy recovery from the infection xx

Thank you allotment lover. Spoke to soon, he is back to where he was. He is currently on an Acute Assessment ward, they are treating the infection with abroad spectrum antibiotic as they do not know where the infection is coming from. They were starting him Haliperodol last night for nausea & vomiting. He has multiple tumours in his abdomen, they cannot treat his cancer until the MDT at Leeds, could be another 2 weeks yet. Was told yesterday that it is very advanced & any yearned will be about quality of life. I am taking your advice & focusing on my husband & our limited time together & have recorded everything for another time. I still cannot believe that someone can be so ill & suffering can not be expedited to the MDT at the specialist centre. 

Dear LadyR,. Ok so for now he's just being held in limbo I guess.  If he'd been well my guess is that he would be able to wait a couple of weeks until the MDT meeting then hopefully start treatment.  The diagnosis of melanoma is not always taken from a visual mole of course and there are different types of melanoma which need different treatment. On this forum you can read about all the types. Obviously the liver biopsy will have given them the type of melanoma and there are gold standards of prescribed care set down by NICE.  Those guidelines are just that and do not necessarily take into account the other physical issues that might be going on for the patient depending on if organs of the body are involved.  There are 4 stages of disease and my guess would be that your husband's is stage 4 sadly as it has already spread to his liver.   Often a primary site is not found(there's a specific forum on here for that plus another one for living with incurable disease) and at this stage that does not matter.  The immunotherapy treatments for melanoma are having good results nowadays so fingers and everything crossed your husband improves enough for treatment.  Is there no-one who can talk to the melanoma team at Leeds to speed things up for you?

Can you access a cancer nurse specialist at your hospital, they are invaluable in having a very holistic attitude and will be a great advocate for you to get things moving, explain medical issues more clearly and are usually so much more accessible than the doctors. Some big hospitals have a melanoma nurse specialist, some just a cancer nurse specialist or a dermatology specialist nurse. Any of these can be a real support for you both. Some are funded by Macmillan and some by the NHS. The hospital switchboard can track one down for you if you've not been given one yet.  Or a nurse on the ward can get in contact with them. 

Most importantly hon he's in a safe place where he can get drugs to keep him stable and treatments to help his liver enzymes stay balanced which is vital right now.    

As for your last comment it might be that they feel he is too poorly to be transferred and possibly too ill to commence treatment right now.  The haloperidol will certainly help the nausea and vomiting and it can have a mild sedative effect too.   My heart goes out to you both right now and I hope my explaining these medical bits too you doesn't offend you but just maybe give you some written info that you can look at again as right now you are probably feeling so overwhelmed by all that's happening.

I hope the staff are looking after you and letting you come and go as you want whilst he's poorly.  Please try and stay hydrated yourself and eat something now and then too. 

Take care xx 

Thank you so much allotment lover.