Hi, looking for any advice or suggestions or positive stories to help us.
My dad, who is 72 years old, has been on a roller coaster journey in the last couple of months. Was seen beginning of July as he was coughing up blood, they started doing some tests that were going through quite quickly but it all slowed down with consultants on holiday etc. It feels like really it slowed down as they didn't want to care.
Dad was fine for ages even when it seemed likely would be lung cancer and then suddenly one day got very tired. Then a few days later he ended up really breathless and we called an ambulance. It turned out he had fluid on his lungs and was in hospital with a drain and oxygen, and then picked up a chest infection. He eventually came home after 13 days, stayed with me for 4 days and then ended up back in hospital because of breathlessness and they found he had a blood clot in his lung, another infection and now mucus. It definitely is lung cancer but it's already spreading so stage 4.
He is still in hospital a week later and the palliative team are now saying he's too ill for chemo and are giving him a lot less than 6 months as he'll have no treatment as radiotherapy and immunotherapy are not options apparently. He's been getting better every day at hospital but he's still on oxygen and IV antibiotics.
Does anyone have anything they can suggest or something? He really is so strong and was so unbelievably active before this. It seems horrible to watch this awful situation unfold. He's still hanging on to some positive hope that I gave him before but I've been told by both the mcmillian nurse and the palliative team to be less optimistic and more realistic.
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Dadsecretary
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Welcome to the forum and so sorry to hear of your dads diagnosis, this is understandably a very distressing and a difficult time for you both.
Although the oncology team can give an average time of life expectancy, as you know, no one really knows and it has been variable in the past. Often, if the person is too unwell then treatments are not an option as they are not well enough to tolerate any potential side effects and this could certainly worsen their condition. For some, they are not able to do any biopsies and it is a diagnosis based on the scans taken.
It is encouraging that your dad is getting better and the focus from the team will be to get him as well as he can be to get him home. There can be an element of being in shock at the speed of everything unfolding and it may feel like a rollercoaster or emotions. When your dad gets home , ensure that they do have the community palliative team involved. Palliative can mean a life limiting condition and not necessarily end of life care, they are often a great support and can help manage any ongoing or new symptoms when your dad is at home.
It can be really hard to be told to be less optimistic when all you want to do is hold onto some hope, it may help to put that aside and use your energy to continue to help your dad in any way that you can, be that practical or emotional.
At the moment, it becomes a change in life for both you and your dad and sometimes a day is enough to deal with as anything else can be too overwhelming. It may help to keep your focus on what you can do for you dad on that day, or what he says he needs, some find it helpful to keep busy, preparing the house for him going home or planning some days out when he feels better.
It can feel quite isolating being a carer and the weight of the care can be all consuming and draining, it is important that you have a good support system for yourself and time for yourself.
We offer online support groups for carers and you can register and view these from this link: roycastle.org/help-and-supp... alternatively you can email our support coordinator Ellen Knapp at ellen.knapp@roycastle.org
I hope you hear from others in the forum of their own positive experiences. We are here to support you in any way that we can and you are very welcome to contact our ask the nurse service if you would like to discuss anything, our freephone helpline number is 0800 358 7 200 Monday to Thursday 0900-1700 and Friday 0900-1700, alternatively you can email us at lungcancerhelp@roycastle.org
sorry to read about your dad's situation and your shock at the diagnosis. It's hard to watch our loved ones suffer and the very word 'cancer' strikes fear in most of us. my dad had bowel cancer in his 50s, initially resected it returned within 6 months and it had spread and we were told he was unlikely to make it to 60. I was in my late 20s at the time and visited him every night after work for the many weeks he was in hospital. he slowly recovered and was 94 in February and cares for my mum at home (alzheimers) and had another primary bowel cancer at 86 and yet more surgery. I know that bowel cancer is different from lung cancer but I was diagnosed with lung cancer in January 2011, detected at stage 2b and had open surgery to remove half my left lung. I became involved in cancer research especially lung cancer at the end of 2013 and despite what I read at the time, met patients, carers and survivors who were several or many years out from their diagnosis. I had no idea that could happen as we seldom hear about survivorship whether people had curative or ongoing treatment. The majority of UK LC patients are diagnosed at stage iv and many are living with it - and active - there are online and in person support groups around the country that may help you both.
As the helpline has already advised, palliative treatment is about relieving the symptoms - but is often misunderstood as 'imminent death' 'end of life treatment' and similarly fears about hospices abound with patients saying 'I'm not ready for that yet' believing them to be end of life rather than supportive services to help those with a life limiting condition. Language and terminology can be really confusing at the best of times but when our minds are full of fear and tend to jump to conclusions, it's important to ask questions of those making the comments but never give up! New treatments are being introduced all the time.
I've met patients who've survived 8, 10, 15, and more years well before today's more modern treatments of immunotherapy and targeted therapies. Every treatment mode has changed since my diagnosis. Radiotherapy is given in different ways for different intentions including palliative. Stage iv means the cancer has spread beyond the lung but does not mean imminent death. Prognosis timelines by healthcare professionals are rarely accurate as there are so many variable factors and what a patient looks like when poorly especially with the addition of chest infections can make us appear far weaker than we would be once the infection has been dealt with.
I have been hospitalised with different severe chest infections in 2015, 2016, 2017, 2019 and 2023 and my symptoms were far worse than when I had lung cancer yet with appropriate medication and time eventually improved. The blood clot and fluid on the lung can happen without it being cancer in the same way infections can be picked up by anyone but those with lung conditions can be especially vulnerable to them.
It's good that he was fit before this as that will help him and hopefully help him recover from the infection to get his symptoms under control. good luck to you both. roycastle.org/about-lung-ca...
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