Hello Francesca, and thank you for posting .

I am so very sorry to hear you are going through this with your dad, it must be incredibly difficult. It is so hard seeing those we love deteriorate, and the idea of them being in any sort of discomfort is also so upsetting. But balancing everyday life and work and its own stresses on top of this in your personal life must feel too overwhelming. I hope I am able to help a bit.

Many people stay at home in similar circumstances as your dad, but usually with the support of community teams. I realise your dad isn't keen on the idea of anyone else coming in, but now he is feeling a bit more poorly, perhaps he might reconsider. Palliative care (or Macmillan teams) work alongside GPs and district nurses to help those who want to remain in their own environment.  They are experts in symptom control and emotional support and can help sort things out so that people feel more supported without too much crowding. The emotional support they provide is very much there for you too so I think this could be helpful.

I wonder if his GP knows about the deterioration, if so they could refer on to one of these teams and I think it would help you both enormously. If you don't think they know maybe give them a ring.

You have asked how bad will he become and whether this will be quick or take weeks. Others here on the forum may come forward with their own experiences of loved ones when they became poorly, but the answers are quite individual to the person. He is likely to become weaker and slower and as you say sleep more, less able to do things for himself, but the time frame is different in everyone. Having him reviewed by a palliative care team will help gauge what is happening for your dad so that you feel clearer on some of these things. This in turn may help you in dealing with all of this.

Here I've posted the section on our website about the teams who can support your dad, and therefore you at home.

And here I've posted a link to the section on our website that will be upsetting to read, but might have answers to some other questions you have.

This is a very difficult time for you Francesca, and I wonder if you have any other support you can draw on to help you right now. Does your workplace know for example what is happening so at least you have someone to share this with.

If there is anything you want to talk through in confidence please ring our nurse helpline the number to call is Freephone 0808 800 4040, and the lines are open from 9am till 5pm Monday to Friday. Sometimes talking some of this out really helps.

Take care,

Sarah.

Hello Francesca,

Firsly I wish to say how very very sorry I am to read about your dear dad and whatyou are both going through. It was be truly awful to see someone you love suffer so much and to feel so helpless yourself when you are trying to juggle caring for your dad and still continue your own life.

My 86 year old Mum (who we live with) has just been diagnosed with lung cancer (100% in her right lung, 4cm tumour and right lymph nodes, left lymph nodes clear and they are unsure about left but think its likely so they are treated as if it is in both lungs). We are awaiting first appointment with Oncologist 10th March and as they have found a mrker in her biopsy that shows a EGFR mutation that 10% have they say a targeted chemo drug that she can take daily at home in tablet form has been found to work well with her type of cancer. It is not curable but it may help control/shrink the cancer and give her more time. One Dr was very much hopeful they were going to do a PET Scan to clarify the question of the cancer has spread from somewhere else, now the decision (obviously the Oncologist) has been to not do a PET Scan and the anser give by the Nurse was as its likely there is cancer in both lungs they dont need to do a PET Scan (but what about the fact of spread from elsewehere?) I feel that decision is age related and I will be bringing it up with the Oncologist. My Mum also had kidney cancer which was treated by Cryoablation in 2019.

I wonder did they biopsy your dad and test for any markers, because I wonder if he could have started treatment on a targeted chemo drug from home and would have been less invasive than normal chemo in hospital? I know your dad's health has reduced now but I feel did they offer your Dad enough options because there are so many different oral drugs for lung cancer now and for people that have other health problems. Could they still try him on one?

I just can't bear the thought that they neglect our loved ones when they are over 80 years of age which I have heard of time and time again. I really hope you can help with your Dad and his symptoms and health can be more effectively managed because I am being repeatedly told by GPs they will not allow my Mum to suffer in the future but then I read your post and I think really?

Thinking of you both.

Jane

Hello Jane, 

I am sorry to learn about your mum and can understand you wanting the best for her. I hope that the oncologist can explain why they changed their mind about the PET scan, it might be because whatever the result, the treatment wouldn't have changed. The biopsy may also have shown a primary lung cancer.

Unfortunately because of the potential for side effects, patients need to be fit enough to have cancer treatment. As people get older they are more likely to have health conditions, for example poor kidney function, that could be a barrier to certain treatments. When a cancer can't be cured and time is limited, quality of life is an important consideration, and there is a balancing act between what a treatment might achieve and the side effects it could cause . Each individual case can be very different and not all cancers are the same. Patients are usually reviewed at a NHS multidisciplinary meeting (MDT) of local experts. So I think in general there should be a valid reason when active cancer treatment isn't offered and in an older person, this is based more on fitness than age.  

When your mum needs palliative care input to control symptoms from her lung cancer, the GP and/or palliative care team will hopefully be able to arrange what is needed to keep her comfortable. Sometimes patients are very independent minded and/or reluctant to accept that their condition is deteriorating which can result in them not getting the support or care that is available. I think the thing is to let whoever is looking after you know how you are.  

But for now, I expect the focus for your mum may be on starting her treatment and seeing how she gets on with it. I hope things go well. 

If you want to talk anything over please give us a call on Freephone 0808 800 4040, we are here from 9-5, weekdays. 

Best wishes, 

Julia