Dad getting weaker - any ideas, suggestions pls?

[Vip1]

Hi, my Dad, who was diagnosed (late) with Stage 4 Lung cancer a year ago is i can see getting weaker, week by week. It's devastating to see. The family are pulling together and trying our best. And he's doing his best. Regular Ensures (energy drinks), lots of fluids and he's eating pretty well. The hard thing (for him) is he seems very weak and so spends 95% of his time pretty stationary. He/we know intuitively this is not good; persuading him to move is way more difficult- again as feels so tired.

He's coming off the back of an infection i should have said and the cancer, per the last scan after his immuno seems, to have spread (pleura around the lung has thickened and a spot on the adrenal gland).

There's an trial that he could be eligible for; obviously being stronger to handle what that may throw at him is key.

So .. would greatly appreciate any thoughts, ideas please on

- a) how to stem the tiredness?

- b) how to encourage him to move more?

He's always, till a year ago, been a walker, so i know being so sedentry is not where he wants to be.

Thanks very much again for your thoughts.

[Concerned2021]

hello , I can’t give no advice as such , but just wishing you well . Someone from Roy Castle should be along to advise soon I would think ? There are so many lovely people on this forum that will be able to help ❤️❤️

[Hidden]

hi Vip1. I’m so sorry to hear this. I’m sure someone from RoyCastle will be able to advise, but I was wondering whether their ask the nurse service telephone line might help? I do hope someone can advise and help. ❤️

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hi Vip,

So sorry to hear about your Dad. This must be an incredibly difficult time for him and for your whole family. It is common for people with cancer to feel very tired and have lack of energy. This fatigue may be caused by the cancer, side effects of treatments, anemia, side effects of drugs, anxiety and depression or potentially in your Dads case, following infection.

It is important for him to discuss how he feels with his cancer doctor, as the symptoms of fatigue can often be helped. Maintaining or improving his fitness level may also increase his treatment options or help him tolerate treatments better. This is clearly difficult for him to do if he feels so tired. Doing a little, but more often and building it up could be a helpful approach.

It may also be useful to make some adaptations so he can retain his independence, for example some families have adapted bathrooms to make bathing and dressing easier and less exhausting. He could request an Occupational Therapist for some input.

The Roy Castle foundation information booklets may be helpful as they contain tips and ideas on managing fatigue and other symptoms. These can be found here.

roycastle.org/app/uploads/2...

Living with lung cancer is a leaflet that provides information on making the most of your health. Here is the link -

roycastle.org/app/uploads/2...

These information booklets can also be obtained in paper form by request.

Support is available through lung cancer connect - roycastle.org/help-and-supp...

Other members of this forum are also very supportive and often discussion and sharing experiences can throw up useful ideas and tips.

I hope some of this is helpful, if there is anything else you would like to discuss you can email ask the nurse at [e-mail] or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600. Patients and relatives can use this number.

Wishing you and your Dad all the best

The Roy Castle Support Team

[Redram]

Try finding a palliative care specialist. You can Google and find a list of Palliative care specialists. They deal with those kind of issues.

[JanetteR57]

Sorry to read of his struggles - does he have a garden? could he walk around the house and garden every day and try to build it up several times? Being active doesn't necessarily walking a marathon or doing something particularly strenuous but it is important to redevelop the lungs. however infections can seriously knock our general as well as our lung fitness off course even without a lung cancer diagnosis... it's a paradox of activity that we rarely feel like doing it especially if feeling below par, but nine times out of ten, we feel much better once we've done it.

maybe he could try some of the breathing exercises on Roy Castle lung cancer foundation website or Asthma & Lung UK websites - as regulating our breathing can be the first step to improved fitness - if we feel very breathless and struggling the first time we try to be active, it can create anxiety that things won't improve so we're more reluctant next time - and infections and respiratory conditions can cause us to breathe more shallowly at the top of our chest rather than deep lung breathing and result in us getting tired more quickly too. Moving and keeping active also seems to create energy as well as release endorphins (feel good hormones) despite using energy to do the activity so although our mind can be telling us we're too tired, new energy results once we've done it.

hope he gets some support and improves soon. If it's any reassurance, I sound and look dreadful when I have chest infections and can barely walk to the bathroom from the bedroom but as I recover and push it a little when I can either walking or swimming then lung health improves more generally. good luck to you both.