Info required what next?

Hi my dad has been diagnosed with stage 4 lung cancer, he has had 5 radiotherapy treatments and will see his consultant in 6 weeks.. We have him home but what should happen now, we have been left to our own devices, no doctor has called let alone come to see him, the nurse we saw at 1st consultation was supposed to put things in,place and we have called numerous times and she is sending out someone this week to fill in some benifit forms.. We don't need benifits we need help, someone to nurse him or let us know if what we are doing is right, is his symptoms cancer related or something else. He doesn't want to eat or drink but we have only just been given complan as my sister called and spoke to a doctor at our own clinic.. Surley we should be getting help and info from somewhere ? Or is this you have cancer deal with attitude the norm.. Any help would be greattly appreciated.

9 Replies

  • Your dads GP is the person to get involved. He/she is your dads primary source. They are able to access any care or counselling or anything they think is helpful, The lung nurse should be doing things but isn't so contact the GP. The nurse should be reported as letting you down. Most are very good.Shame he has got one who isn't doing her job.

    Best wishes


  • Hi

    Really sorry to hear about your dad. I think the first few weeks after diagnosis are terrifying. My husband has lung cancer and we found that during the first month we didn't get great support from the hospital and you feel lost and angry. Once he started chemo things improved. Do you have a PALS office in the hospital (patient advisory line), if so call them and explain how you're feeling, or if you know your oncologists name then email them and their secretary (you'll find their email addresses in the hospital website), and tell them how frightened you are and need some support. It will be an exhausting and scary time for you as you feel helpless, and I've been through that and still go through daily ( we are 3 months down the line now and chemo is well under way). The only comfort I can offer is that once you see your consultant you will feel better and in control a bit more. When you do see them, write down questions before you go and don't be afraid to ask them anything you want to.

    Also if your dad is feeling really poorly, there should be an emergency assessment bay number in oncology to call, try to get that number and ring them as they may tell you to bring him in for someone to assess him.

    All the best


  • Get in touch with your local hospice they are very helpful and they can answer most question and probably get you the help you need, your dads consultant and lung specialist should be doing more, hope this helps let me know how he gets on.

    Take care Ann

  • Thank you all for your replies they are very helpful, my sister will contact our GP this morning and I shall be in contact with our allocated nurse again.. to be honest she has been terrible at returning calls or giving us information.. we are at a loss as what to do for the best. I will also contact our consultants secretary and see what help she can offer.. thanks again.. I will keep you posted on our results.. I really think there should be a booklet about what to do and who to contact, it would be so helpful.

  • Have you got a cancer help centre near ,often they are attached to the hospitals they offer really good support for both you and your Dad, if not go through your GP or the Macmillan nurses help line or nurses linked to Roy Castle .There is help out there unfortunately it doesn't always come to you ,I felt a little lost in the beginning but managed to find some superb links .Don't feel too badly about the things that don't work just try and find something that does work for you and yours .Best of luck to all of you in this distressing time .Diane.

  • GP been in to see him this morning, I've to take him for another chest t x-ray tomorrow morning, she has also taken bloods and will call tomorrow afternoon with the results. she offered him a care package which he has refused for now but it will be implemented when we need it. we are now in the system.. the palliative care team will pop and see him to introduce themselves too.. one phone call this morning has put all this in place in a few hours. if only we had known sooner.. thanks to everyone for there concern it really is appreciated.. we are not alone.. love to all.. T x

  • Hi T hope yr feeling less alone now you have some information regarding yr dad,s palliative care .it,s even more stressful when the patient is refusing help(,pride and denial,).this happened when my late husband was diagnosed .I have to say the professional care he got was second to none he was given a binder full of info the Macmillan support was fantastic they come to yr home and assess yr needs they help fill forms for benefits they give you equipment (a proper electric hospital bed commode wheelchairs etc) that makes care at home might not be needed or wanted at present but it is there for you . hope you get all the help you need take care of yourself too you,ll need yr strength ✊💞

  • Hello Ahudreddas, 

    It can be very frustrating when a family member is first  diagnosed with lung cancer, especially if you feel you have no  support, glad to hear that things are now in motion and that the palliative care team is now in contact. 

    This forum is a great place to come for information and support from others who are in similar situations often sharing their experiences with you.

    Encourage your dad to eat small portions little and often of whatever he likes , ask the palliative care team when they call about which supplements would of benefit to him. He may need a little time to himself to come to terms with the diagnosis before accepting outside help.

     You can also call our helpline  Free phone 0333 323 7200 option 2 and the nurse or support staff will be happy to talk to you. 

  • hello all, thank you for your support,

    We had an amazing team in the end, the district nurses were fantastic, all gentle in there approach and care.

    we also had Marie Curie nurses overnight for the last 3 nights of dads care..

    we were lucky enough to care for him at home in his own bed, where he slept beside our mum to the end. what a blessing!

    my sisters and I were trained to draw up his medication to give it overnight when required. It was emotional but a pleasure to nurse him, we are so grateful we were able to do this, dad did not want to go into a hospice.

    The packages and care are there and we cannot believe how totally professional and understanding these nursing staff are.. we are in awe of them all..

    our family doctor was outstanding in her one on one care too.. ( we changed dads original doctor)

    My advice, if your not getting any help in the beginning, SHOUT and shout loud, we made a lot of noise when nothing was happening in the beginning, thanks to the advice on here. I would hate to think what a poor wee old person on their own would have done, terrifying to imagine..

    some of the clinical nurses who are put in charge of your loved one have no idea what is available, so force them to do there job and find out, they are supposed to have your best interest's at heart and make life a little easier for you.. (we are still waiting on a visit from the dietitian.. seriously!) ..

    In closing I would just like to say this is an amazing forum, the help and support was every much appreciated.. even if I wasn't on too often.

    The advice was life changing for us, we got what we needed, when we needed it in the end and I suppose that's what's counts.

    Our dad passed peacefully and quietly in his own bed surrounded by his family and that was only possible because you made us aware of what could be implemented in our time of greatest need and I am forever grateful to you all

    God Bless You All

    T xxxxx

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