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Recurrent Lung Cancer Spread to Lymph nodes and severe COPD

10 Jun 2019 17:10

My partner has lung cancer again after 3 years clear fllowing VATS. He has severe COPD and they said weeks to months at the end of January, no treatment just paliative care. He is pretty much house bound and has frequent admissions due to infection. No one will committ to further prognosos other than weeks to months. Family are starting to look at me as a lair.

 

Recurrent Lung Cancer Spread to Lymph nodes and severe COPD

10 Jun 2019 18:21 in response to Paddy2012

Dear Paddy. Why would they think you're a liar just because your husband is beating his prognosis.  Mine has incurable lung cancer but is still with us two years later, it's a guess game fro the medical teams. They really don't know and some people beat the odds.  So chin up

Recurrent Lung Cancer Spread to Lymph nodes and severe COPD

11 Jun 2019 16:31 in response to Paddy2012

Hello Paddy and thanks for posting, 

I am sorry to learn about your partner.

I think people often imagine that doctors can use a formula to give a very precise prognosis. Unfortunately they can't, and while they try to provide a reasonably accurate estimate, it isn't written in stone so there is usually some uncertainty. Patients can and do defy their doctors expectations.   

I hope no one is really thinking that you aren't truthfully relaying what the doctors have said. It can be a stressful time when someone in the family is very ill, and can sometimes put a strain on relationships as everyone's nerves get frayed.  The key thing to try and explain is that the doctors don't know anyone's prognosis for sure and it is only an estimate not a prediction.  

Give us a call if you want to talk anything over. The number to call is Freephone 0808 800 4040 and we are around from 9-5, Monday to Friday.

Take care, 

Julia

Recurrent Lung Cancer Spread to Lymph nodes and severe COPD

11 Jun 2019 19:35 in response to Dor06

Thank you, tats really good news about your husband.

Recurrent Lung Cancer Spread to Lymph nodes and severe COPD

11 Jun 2019 19:37 in response to CRUK Nurse Julia

Oh they are.........all along it has been a case of 'he is not as ill as she says'. Its very tough as his COPD is really bad and the cancer is on top, no one seems sure on what is causing him the most difficuty to be honest. Sitting down he looks the same, not many see him mobiising and gasping for air despite being on oxygen 24/7.

Recurrent Lung Cancer Spread to Lymph nodes and severe COPD

12 Jun 2019 16:42 in response to Paddy2012

Hello Paddy2012,

I hope you don't mind me posting to check that you and your partner are getting enough support at home because I was wondering if he has been referred to the community palliative care team. They are experts on controlling the symptoms of cancer and other life limiting conditions and can also support you both. Your partner's GP can refer him to this service. We have more information about support at home on our website, click  here to see it.

Also, do speak with the lung cancer nurse involved in his care and your concerns about his health. They can also refer to services that can offer support at home.

You would be welcome to get back to us and you may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

Take care,

Caroline

Recurrent Lung Cancer Spread to Lymph nodes and severe COPD

13 Jun 2019 16:26 in response to CRUK Nurse Caroline

Hi yes we are in touch with Paliative and they are good, we have carers 4 times a day too. I suppose I feel very lonely and it seems the family come over give an opinion and walk away, I cant and it gets to me sometimes. They say things like you need to do this you need to do that, Dad wants to do this and that etc.  He is housebound and he has a wheel chair but alone with me its a migty task that tires me and I tend to keep it to only if we have to.  He is on 24x7 oxygen and really struggles to even go for a wee most days, they dont see this so therefore dont 'get it'. It is tough as I am holding down my job but work are good with me and trying to care but its always my plans that get moved and cancelled as having appointments and plans dont stop me from being available apparenty but for them it does. I may sound bitter perhaps I am but when they are questioning me on the time frames too it really does get to me, if I could be any more specific I would surely they know this x but thank yu for checking x 

Recurrent Lung Cancer Spread to Lymph nodes and severe COPD

13 Jun 2019 17:07 in response to Paddy2012

My partner has lung cancer diagnosis a year ago he had now been told palative care only we are trying to get his pain under control but it is really hard .

My faith in the national health service has gone down hill.

The nurse s are great but the department s don't speak to one another.iI have been told weeks to months.

Recurrent Lung Cancer Spread to Lymph nodes and severe COPD

14 Jun 2019 08:42 in response to Jassyanne

Hello Jassyanne,

I am very sorry to hear about your partner's situation, this must be a difficult time for you all.

I wonder if your partner has been referred to the community palliative care team to get his symptoms under control and make him feel more comfortable. His GP or lung cancer nurse can make the referral if it hasn't already been done. Even if he is currently on painkillers and he is taking them as prescribed they may not be doing a good job and there are other types that might work better. So do ask the palliative care team, lung cancer nurse or GP about this.  

It might be helpful for you to read our information about the support that is available and you can ask for, see it on our website here.   We also have some information about pain and what can be done to make it better here

 

I hope this has been of help. Please get back to us if you need any more information or support.  You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

Take care,

Caroline