Have you had a good experience with y... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation
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Have you had a good experience with your lung cancer nurse specialist?

LorraineD
LorraineDAdministrator

We know that access to a lung cancer nurse can make a real difference when you are going through treatment. So this year we have launched 3 awards to acknowledge CNS's who have shown care, support and commitment to their patients.

If you would like to recommend your nurse entry forms can be found by pasting this in your web browser:

roycastle.org/get-involved/...

We would be interested in hearing all your views on what makes good support and any suggestions for improvements in practice.

best wishes

Lorraine

on behalf of the Information & Support team

Freephone 0333 323 7200 option 2

email info@roycastle.org

18 Replies
oldest • newest
jillygirl
jillygirl

Hi Lorraine, tried going into the web page. However it comes up with unknown page. (could be my pc as it has been playing up) :)

Bow-19
Bow-19

Having difficulty getting into the web page too.

LorraineD
LorraineDAdministrator
in reply to Bow-19

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

Bow-19
Bow-19

Thanks I can access the form now. Will make an nomination.

WhiteHartLeanne
WhiteHartLeanne

Apologies if I seem oblivious to all this - my Dad was diagnosed with stage 4 lung cancer (it has spread to his liver and glands) in July. He's currently just over half way through chemo and although his GP was terrible, the care since has been excellent. But this is on the chemo ward, that's the only place we see anyone other than his consultant or blood tests/transfusions. He was introduced to a lung cancer nurse at the beginning, but we've not seen her since that initial meeting - is this normal? Neither have we been given timescales (other than maybe a year if we're lucky) or told which type it is - although we were told he's responded marvelously to chemo which may give him an extra few months. Targeted therapies/trials haven't been dicussed with us either. I'm now really worried after reading all this that we've not received the right info etc. I'd be really appreciative of any help, please?

LorraineD
LorraineDAdministrator
in reply to WhiteHartLeanne

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
WhiteHartLeanne
in reply to LorraineD

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

LorraineD
LorraineDAdministrator
in reply to WhiteHartLeanne

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

Anna777
Anna777
in reply to LorraineD

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.

Hidden
Hidden

My lung cancer nurse has been very evasive, saw her once at meeting with consultant and spoke to her on the phone once. She has not been helpful or supportive in any way at all. In fact go as far as to say a complete waste of time having her.

Buster49
Buster49
in reply to Hidden

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.

caitesnan59
caitesnan59

When i was first diagnosed, I was shocked as you can imagine. When we came out from seeing the doctor and getting the bad news we were taken into a small room by a strange woman who told me to sit down then proceeded to stroke my arm !! I am not a touchy feely person with people i dont know and i think her approach was totally out of order. She should have just said who she was what her role was and left it at that.

Anna777
Anna777
in reply to caitesnan59

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

MaryGray
MaryGray

Sadly I haven't found the specialist nurse helpful either. Talking to her on the phone a couple of times seeking information I ended up feeling she could not care less what happened to me - she was overworked and I was just one more nuisance in a long line!

Buster49
Buster49

I have small cell lung cancer. I saw my Clinical nurse specialist for the first time after diagnosis almost 3 years ago. There were many times I wanted someone to talk to but CNS always answer phone. I had many appt problems. No help from CNS. No rapport with her. I know I am lucky still to be here. Feel can't ask her about how I feel.

Ry8tes
Ry8tes
in reply to Buster49

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.

Colin57
Colin57

Seen my specialist Nurse once in a consultants meeting and once across the receptionist counter briefly. Spoke on the phone twice both calls instigated by myself. Has made no contact with me not even when I went into hospital to have a lung removed.

Quite disappointed really.

GaryNR14
GaryNR14
in reply to Colin57

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.

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