LorraineDPartner in reply to Bow-198 years ago

Apologies the link seemed to have been a problem with the link. I have now edited it and it works from my pc. let me know if it works for you?

best wishes

Lorraine

LorraineDPartner in reply to WhiteHartLeanne7 years ago

Hello Leanne

Sorry to hear about the situation with your dad, it can be a lot to take in. I am glad to hear he has had good care during his chemo and has responded well to this treatment. Sometimes if someone is in regular contact with the Chemo nurse then they may not see their lung nurse for a while. At any stage you should be able to ask to speak to her to discuss your dad's care.

When someone is diagnosed with lung cancer they will look at a range of tests such as chest X-ray, CT or MRI scan to see how the cancer is behaving. Ideally they will also try and get a sample of the tumour tissue to find out more about the particular type of cancer. This will depend on where the tumour is within the lungs and how well the person is; so this may be an explanation if your dad did not have a broncoscopy or other lung biopsy. Sometimes, for example if the tumour is too close the heart, it is not safe to perform this test.

Giving timescales for someone can be useful but also quite distressing. Timescales are created from the average experience of a group of patients in a similar situation, they are only a guide and people can vary widely from average.

I am not sure if you have received our"Living with Lung Cancer" pack it may offer information on some of your questions. We can send you a copy or help with any specific queries on our helpline Freephone 0333 323 7200 option 2. I would also suggest a call to the Lung Cancer Nurse to discuss what next for your dad.

I hope this information helps, do give us a call if you want to talk or get any additional information,

best wishes

Lorraine

@Roy Castle

WhiteHartLeanne in reply to LorraineD7 years ago

Thank you for your reply, Lorraine. It helped a lot, we now know that Dad has small cell lung cancer that's spread to his liver and glands - prob just about as bad as it gets However, he's responded sooo well to chemo that its given us a little more hope that he could be around for longer than originally thought. He has his last lot of chemo next week, obvs we're terrified of what happens next due to him having the aggressive/rapid growth type of lung cancer. We're just going to stay upbeat (well try to), and Dad has said that he will try these alternative therapy/natural medicine treatments - they can't do him any more harm!! Such a scary disease to live with Xx

Reply (0)Report

LorraineDPartner in reply to WhiteHartLeanne7 years ago

Leanne

Let us know how things go with the chemotherapy. As you say small cell can be very aggressive, but can respond well to chemotherapy. Meanwhile I hope you have good support around the family,

keep in touch and thinking of you

Lorraine

@roycastle

Reply (0)Report

Anna777 in reply to LorraineD5 years ago

I know this is a really old post but I saw a link to this thread so perhaps people are still reading it. After my husband was diagnosed we were taken into a room by a very cheery nurse who spent the next half an hour talking in a very upbeat way about how he could go for compensation due to having asbestos exposure and being a non smoker and then gave us a lawyers card. She said she was his lung nurse but she never replied to calls so he didn’t bother after that. He then went to another Trust.

Reply (0)Report

Buster49 in reply to Hidden5 years ago

I had same experience I have seen my CPN once in 3 years when I insisted. She is only on answer phone. Sometimes you don't want to wait until next day to ask a question! A family member had leukaemia and the CPN was great. I wish I had a CPN like that. I dont feel comfortable telephoning her so I don't.

Anna777 in reply to caitesnan595 years ago

Oh, I have just realised I have written ny reply to LorraineD instead of to you. Sorry about that.

Ry8tes in reply to Buster495 years ago

Hi Buster, I bet you are talking about University Hospitals Bristol. I had some appointments there and quickly changed to Gloucester. I thought that it was just me or that the CNS was having a bad day. I also think they use the answer phone for their convenience, its awful sitting around stewing waiting for a call back, maybe same day maybe not. Can you try Gloucester, they were brilliant, nothing too much trouble to explain and they treat you like a human not a burden on them. I have heard Cheltenham is superb too.

GaryNR14 in reply to Colin574 years ago

Yes, we're not overly impressed with the specialist nurses. It seems that it's a case of out of sight, out of mind.

I have also sent a number of emails and not had the response I'd expect, if at all. We're trying to chase down a letter from the consultant that we can present to employers detailing my partner's condition and this has just not happened.