Palliative care team advice? X

Hi everyone, 

Just over 3 weeks ago my dad was diagnosed with stage 4 lung cancer (spread to liver and lymphs). He finally had a biopsy on Wednesday we get the results on the 11th and will find out his options re treatment plan. The palliative care team came out yesterday. They were really brilliant. We talked about the many issues dad is having mainly his anxiety and not sleeping. The doctor said he could have two medications that would be perfect for him. She said GPs don't really like to do it long term but it's great for 4-5 days just to calm dad down and get him sleeping again. Dad was so happy with this. Mum called the surgery yesterday evening (as she was told to do) to find out if the prescription was ready and was told sorry but the GP has refused to do it. I cannot believe it. How is this allowed to happen? We waited three weeks to see them, they were so nice but dads not allowed to have what they told him he needed. It just seems pointless. I just can't get my mind around what that means re his home care. We were looking forward to having the specialists come and see us and they made so much sense and they're coming back next week but what's the point if the GP won't listen to them and do what he's asked? It seems a waste of time. And it doesn't fill me with confidence that the two can disagree and go against each other. I'm so confused. Has anyone had this happen? And is it just something that happens or is it really bad and shouldn't be allowed like I'm feeling right now? 

Thanks so much. 

Tracy. X

  • Hi I was in hospital the other year In the next bed was a woman with oxygen mask on & SHE pushed a cigarette through a hole in the mask to smoke you could see the smoke being pushed away by the oxygen. The nurses were watching and not bothered. It just seems so not bothered when you think what could have happened. Any best wishes.

    Billy 

  • Hi Victoria, 

    Thanks so much for getting in touch, hopefully we can chat here and get through this together all of us. Reading everything you wrote I think you did the right thing for your dad. Everyone copes with it differently and you did your very very best to deal with it in the best way for him. I would try not to have regrets or wonder whether or not you could have done things differently even though it's much easier said than done. There's not a lot of support available, not really and I think we are all just muddling through doing our best which is almost impossible when your heart is breaking into a million pieces and we aren't medically trained for this either. I can't even begin to imagine how you're feeling having lost your dad so recently, I know I'm going to go through it soon but I haven't yet and I can't imagine what it feels like. You only had his funeral Thursday, you must be feeling absolutely awful. I am so sorry you have been through this. I really hope I can help if you need to talk. Best wishes. Xxxxxxxxx

  • Aaaawww [@Chriss]‍ 

    If you and I had magic wands the world would be such a lovely place. Can you imagine?! I would absolutely love to have the power to help and heal. It really does suck all these awful things people go through and the impact it has on families is so sad and just awful. 

    I agree totally, I've talked with mum and she's put his lighters away and he knows now he can only smoke once he's said he wants to and we've moved the oxygen. He totally understands and was really cooperative so I'm really pleased with him. Neither of them want to go through that again. It frightened the life out of them. They're still really shaken up, mums super emotional, the tears keep coming. I'm so glad I have strong arms Chris. Lots of love. Xxxxxxxxxxxxxxxx

     

  • [@Billygoat]‍ 

    Oh my! That is really shocking. They'd have had to evacuate the whole ward if that had gone up and the lady probably would have killed herself. My dad was lucky my mum reacted so quickly and mum is completely traumatised. I didn't realise how much it affected her but she was crying last night saying how useless she feels etc.... I was on the respiratory ward going back about ten years ago and we had the same problem. A lady about 3 beds down from me was on oxygen and she kept lighting a cigarette but the nurses were going absolutely crazy with her. She had them running back and forth desparately trying to explain to her what could happen. The one nurse stood by me so much of the time peeping around at the last to keep an eye on her. In the end the lady next to her lost her cool a bit and told her that if she didn't care about blowing herself up could she at least consider that the rest of us didn't want to die just yet and that seemed to make her think to be honest. But yes nurses turning a blind eye to that is so irresponsible, maybe they haven't actually seen for themselves what can happen. I was really shocked to see the aftermath and the way mum described it is awful. Xxxxxxxx

  • Hi Tracey

    Thank you for your lovely message. It really does help connecting with people on here. I'm so pleased that your dad mum and you werent too badly hurt in the oxygen incident. It must have been absolutely terrifying for all of you. My dad wasnt on oxygen but he would frequently ask for a cigarette for his nerves during his final weeks as well as brandy! I'm sure he would have blown us all sky high if there had been any oxygen around. I always used to worry a little when he had a brandy due to the meds he was on although he only ever had a very small glass. As he wasnt eating and barely drinking by this time it was nice to see him get so much pleasure from the taste.

    I am finding things very difficult at the moment. He was such an engaging person it seems so quiet and sad without him. My mums sister has been staying with her since the funeral and went home today so my mum is alone in the house tonight and i am so sad and worried for her. Ive been trying to call her every hour to take her mind off of it a little. 

    I hope the last couple of days have not been too challenging for you and you are managing to get some rest. You are doing a fantastic job. I am thinking of you and your dad  Cherish every moment you have with him xxxx

  • Hi Amigo (so sorry...I thought I was replying to MiGi... apologies if this has tagged on to someone else's reply) xx 

    Just stopping by with a huge hug for MiGi, her family and of course anyone else that wants one.........xx

    Been off the forum for a few weeks....now playing catch up.........thinking of you, all of you.....xx

    Lots of love xxxxxxxxxxx 

  • Hey Starcatone, 

    Thank you so much. I've been gone a while too. Hug much appreciated. This is a bit of a living nightmare. BUT everything's ok. We're getting there. Big hugs back and to  everyone else too. Does anyone know where Chrissie is? Xxxxxxxxx

  • Hi there hun ...

    Still around but been babysitting the grand kids a lot lately ... at 7 and 4 ... it's took a lot out of me .. but so so love it ... they are what keep me going .. that's my world in that pic ...

    So how are things going ... l try so much, looking for those new ones who are waiting for results or the young ones on here too, sometimes I slip past my buddies ... but so glad I saw your post today ..

    Are you still doing the lavinda ... so I'll keep a look out for your up date .. 

    Sending you a big vertual hug as always ...  Chrissie

  • Hi migi 

    i bet your getting in a routine now, sorry for not writing lately things bit hectic, saw specialist about wife said something wrong with her brain needs a scan it could take four months, doc's surgery just closed not sure what's going on there yet got to try and sort out prescriptions soon, hope you are looking after yourself as well as your mum and dad, best wishes.. Xx

    Billy 

  • Heya Chrissie! 

    Aaaawww 7 and 4- that's exhausting but like you said so worth it. I found the 2.5 age gap between my older two harder to manage than twins because they both wanted to do different things! And I definitely notice as I get older I have a little bit less energy!! 

    Its all ok, dads waiting to have tests to see if he can have treatment. I know it's a bit mad after the diagnosis in January but that's what they've said now. The mind boggles really and you wonder if anyone really knows what they're doing but dad actually just called me and he's quite happy and looking forward to it bless him. It kills me his determination not to leave us. 

    I slept last night Chris! I didn't wake up until around 9 this morning! I have no idea what that is all about but it was so nice! It's my birthday on Tuesday, my daughter has just ordered me a special sparkly lip gloss I've had my eye on, I've told her I'll have that from the 4 of them otherwise my son wil be out buying chocolates and flowers and wasting his money! 

    How are you feeling in yourself though? You doing ok? I'm sure my daughter is picking up germs from training at the hospital because we've been sicky on and off since she started! Hopefully we are just boosting out immune system and we'll be OK once we've had everything!! 

    So lovely lovely lovely beyond words to hear from you!! 

    Big hugs!! Xxxxxxxxxxxxxxxxxxxxxx