Lung Cancer

A support group for anyone affected by lung cancer to come together, share experiences, and ask questions.

Dad is 6 years post diagnosis

Lily Wren
Posted by

Hi all,

I just want to ‘off load’ a whole heap of emotions at the moment. I’m just sat in my car, waiting to go to a meeting for work whilst feeling sadness at my dads current situation. For some recently diagnosed it’s probably one of hope though as 6 and half years on he is still here and, until recently, has had a relatively good quality of life.

My dad was diagnosed with lung cancer in July 2012. At that time we were told it couldn’t be cured. He had rounds of radiotherapy, chemo followed by radiotherapy. He had a good couple of years break from that. However last march the cancer had spread further. Since then he has been on the immunotherapy trial. However, last month he developed pneumonia and it has been a hard road for him. He’s always had such a strong mental attitude but this has really hit him hard. He also has COPD and is now using his nebuliser 4 x daily. Sadly last week he was told the trial is no longer working for him and there is nothing they can do. I’ve just had a conversation with my mum who has said she feels so powerless and sees him ‘fading before my eyes’. They are currently having a downstairs bathroom fitted but mum says she doesn’t think he’ll be here to see it :( it’s been a long road and I know the outcome is coming fast now but I just feel helpless. 

Im not sure why I wanted to post but just felt the need to do so. Thanks for reading if you got this far! Cancer sucks but my dad has come along way living with it and will continue to do so I’m sure xxx

Patch123
Posted by

Hi Lily I think it's good to sometimes just sit and write everything down as can be therapeutic. He has clearly done so well and is obviously a fighter. You have to take each day as it comes. There's ups and downs to this horrible disease and we as a family always refer to things as getting over hurdles. Who knows what's around the corner but keep positive and keep pressing your medical team. A healthy diet and light exercise along with plenty of support counts for a lot xx 

PhilB
Posted by

Hi Lily

You post because, like the rest of us, you need support andneed to know someone else understands. 

Your Dad has been on a long journey and sounds like he has done remarkably well and that, no doubt, was helped by the support of you and your family. You say you feel helpless but, believe me, you aren't. Dad (and Mom) will need plenty of love and support and they will be relying on the family.

NEVER think you are helpless. You have depths of strength you have never realised.

I wish you well. Phil xx

If you didn't care
What happened to me
And I didn't care for you
We would zig-zag our way
Through the boredom and pain
Occasionally glancing up through the rain
Wondering which of the
Buggers to blame........
Pigs on the Wing - Pink Floyd
Judy123
Posted by

Hi Lily,

I know just how you're feeling. Completely helpless and anxious. My husband was diagnosed in June 2016, a month after I had had the 'all clear' for breast cancer, a 5 year struggle.

Unfortunately, the tumour.is too near the heart and is therefore inoperable. I had a mastectomy and diep flap reconstruction (a 12 hour operation), followed by chemotherapy. My husband chemo and radiotherapy and was stable for a year.

The tumour became active again in January and another course of chemo began. In April he was in hospital for 3 weeks with pneumonia, a blood transfusion, and infection followed. He was lucky to recover from it.

Since then he has had anaemia and chest infections. Ct scan showed activity but still contained in lung. Immunotherapy was offered - or nothing! Knowing his pdl1 biopsy showed a negative result (not good) oncologist confirmed his chances of immunotherapy working is less likely. But, she advised us to try it, which he is.

Don't know how I'm going to cope if it doesn't, my daughter can't help (she's a daddy's girl and a mess at moment), and my son hasn't wanted to know us for 8 years. I truly thought I would go first (I'm 62). Trying to stay positive is so hard.

He also has COPD and his breathing at times is frightening. I keep booking short breaks,.giving us memories and taking my mind off the inevitable. How much longer I can continue this I don't know, but I will keep going as long as I'm able to.

Be there for your parents, they need you and know you're there for them. They are the lucky ones, having you care.

Judy

Lily Wren
Posted by

Hi Judy,

I’ve just noticed your reply (notifications from Macmillan for some reason went to spam in my email). Many, many thanks for your words. It sounds so tough for you at the moment. I want to send you lots of hugs! We were at the Christie on Friday and once and the immunotherapy has now stopped. he has had nearly two years on it and seems to be pragmatic now, saying he just wants to take each day as it comes now and not get ‘stressed’ as it makes the breathlessness worse. Although just moving makes it worse. Mum said he was a bit better today, I think the pneumonia hit him so hard. We just have to keep on keeping on somehow. Sending. If hugs to you too.

The immunotherapy is seen to be a good treatment and did seem to stabilise the cancer for a time. It’s just he’s been so poorly with pneumonia and breathing problems he just can’t take it anymore.  

Take care Judy, we just have to take a day at a time xxxx

Lily Wren
Posted by

Hi Phil,

Awww thank you very much for those lovely words. I’m feeling in a better place at the moment and you are right - we all have depths of strength more than we realise

many thanks again.

best wishes, Melanie xx

Lily Wren
Posted by

Hi Patch,

Thanks so much for your reply, he certainly is a fighter and continues to fight on :) I just have to follow his lead. Once again, many thanks for your words xxxx