Feeling lost

Hi,  I'm new here and I'd like to start by saying how sorry I am that we have all had to meet under such awful circumstances but also need to add how grateful I am to have found somewhere I can ask for help and guidance. My dad was diagnosed with lung cancer 3 weeks ago. I called an ambulance when he lost all feeling down one side and fell over, I thought he had a stroke. He has been unwell for months now but after numerous tests the doctors had said he had calcification of the bowel and to basically be on his way. Whilst in A and E the doctors did some scans to check for a stroke and that's when they found the tumour on his brain. 

Naturally I was devastated. After more tests and a broncoscopy ( forgive the spelling!) we found out he had inoperable cancer. The report stated poorly differentiated non small cell carcinoma with metastasis to lung, brain, liver, adrenal glands and mediastinum. He has since discovered a large lump below his belly button which is believed to be further spread to the bowel. He is on a high dose of steroids at the moment and he looks so unwell. Barely eating, he has lost over a stone in weight, his skin is going yellow and he spends a lot of time in bed. We see the oncologist for the first time next week and I'm so scared of what they will say. Chemo has been mentioned. I will of course care for my dad and do whatever needs to be done for him. I just wondered if anyone here has had anything similar? And can shed any light on what we may expect? I feel so lost. What questions should I be asking when we do see the oncologist? This is all so hard. I worry everyday looking at him just getting worse. I have 2 children under 5 to care for too ( one of which is severely disabled) and I don't know how I will cope? And I feel selfish asking that! So many emotions and I just don't know what to do or where to turn. Please help

 

 

 

  • Hi, and welcome.  I am so terribly sorry to read your post, your dad and yourself are going through so much.  The shock of finding he has cancer in so many areas must have been devastating for you both.

    Everyone's experience with cancer is different so I am afraid I couldn't second guess what your dad's oncologist might suggest. What I would say is write down your questions for when you see the doctor, it's so easy to forget the things you need to ask.  

    Having looked after close family members with this awful disease and now have incurable cancer myself I just want to say how wonderfully caring you sound.  Believe me, that will mean so much to your dad. Please come and talk whenever you want and let us know how you get on next week.  With my very best wishes.

  • Hi

    Welcome to this chatty forum though really sorry to see the reason for  your being here. Pauline has given great advice about writing down any questions you might have but understand the dilemna at knowing when and what to ask when your Dad sees the oncologist.  I went with my husband after his 'incurable' diagnosis (cancer of the lung linings - Mesothelioma) and we had a lovely lady consultant along with a support worker (for her and us).  To be honest it was hard to take it all in but the main conversation was explaining to us how in the first instance they could help with the symptoms regarding pain relief as and when they appeared.  My husband was offered the chance of chemo to possibly slow down growth and there were all sorts of blood tests/x rays to be explained.  Yes, it was daunting but at the same time it helped us understand what was likely to happen (though there is no cut and dried answers as everyone reacts differently both to the cancer and any treatment).

    You should not have to cope alone (in the latter stages of my husband's illness we had good palliative care through our GP/Community Nurses/Consultant led palliative care team) but I suspect you will have to ask for assistance (sadly it does seem to vary from area to area, even doctor to doctor). If your Dad is happy for you to talk with his doctors and it sounds like you have a good relationship, then he can give permission for them to disuss things with you (as well as him).  If you are at all worried about your Dad before his next appointment then do contact his GP or hospital team for guidance.

    You sound a very caring person and I wish you and your Dad all the very best as you face a difficult situation.  Use the forum anytime = there are some wonderfully understanding people here and I would have been in a much harder place without having the forum to offload to.  The nurses can also be contacted 9-5 Mon to Fri on the number on this page (freephone from UK landlines) if you would like to chat one to one. Take care  Jules54

  • Thankyou for your replies x I will definetly think about writing things down as I know I will forget what to ask! I guess I just never thought it would happen to us....to him! Going from a strong independent man to a shadow of himself in the space of a few months is hard to watch. We do have a good relationship and he has lived with us for a while now, my children adore him and he has been a massive part of their lives. Thankyou both so much for taking the time to read and reply to my post. I'm so sorry to hear both of your stories and wish you both the best of luck x