So Fatigued

[Alfie2024]

Hi There,

My partner has stage 4 SCLC diagnosed 26th July. It has not responded to first line platinum chemo and has infact got bigger as it is resistant and we have decided to not proceed with any other type of chemo as there does not seem much point. We know that time is very limited and he is now home after a hospital stay as his cancer has caused atrial fibrilation and his heart is now affected. He has always been very active, playing golf, swimming, loves sport, walking our collie dog on the beach. We live in a beautiful part of North Scotland but since last week he is so fatigued he can barely get up the stairs let alone walk on the beach anymore. He is pumped full of drugs and steriods but these have not given him any energy and we are both finding it so hard to find anything to keep our minds occupied. We feel like all we do is sit on the sofa, hug and kiss each other and are just waiting for the inevitable to happen. How do other people deal with this extreme tiredness and despair?

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hi Alfie2024

I am sorry to hear of the very difficult situation you and your partner have found yourself in, in such a short amount of time with so many emotional and physical changes to cope with. I hope you will find some comfort and practical advice from reaching out on this forum . In previous posts it has been suggested that planting bulbs , herbs or seeds in window boxes or planters can provide a focus, watching them progressing . Bird feeders placed were the birds can be watched feeding . Writing, drawing or sketching about happy memories such as your beach walks. Writing letters to family or friends may be a distraction and provide a focus in your day. Planning and cooking meals together can be enjoyable. Gentle exercise at home , from chair can be beneficial , some useful exercise suggestions can be found in our Living with Lung Cancer booklet (page 50-54) I hope you find some of these suggestions useful , if you have any other questions and would like to talk to someone you can call our free and confidential Ask the Nurse service on 0800 358 7200 or by emailing [e-mail]

Best wishes

[Cockailschemocancer]

Hi Alfie I can’t imagine what this is like for you both. Have you been referred to a hospice that maybe can help organise some trips out for you both that you can enjoy? Plus anything else that they offer for complimentary therapy. I would 100% work with them, they really should be able to help with some ideas that your partner can do and will enjoy x

[Alfie2024 in reply to Cockailschemocancer]

Thank you so much for you suggestions and I will reach out to the Highland Hospice and see if there is anything they can offer etc. Thanks again

[Gingergus in reply to Cockailschemocancer]

I agree. I've just got our local hospice on board and I've been amazed at what's on offer for patients and their carers.

[Gingergus]

Hello Alfie - this very much echoes my recent thoughts, and I fully understand how you are feeling. I'm on the point of giving up on treatment because I feel there's very little that I'm able to do. I'm at least going to buy a wheelchair, just for the pure pleasure of being taken outdoors and feeling the wind in my face.

It's a dreadful disease isn't it - I could never have visualized myself as so helpless and dependant on others.

I hope you can try and make something of whatever time you can spend together.

All the very best to you both. xx

[Alfie2024 in reply to Gingergus]

Thank you so much Gingergus for reaching out. It was your original post that made me put my own post on and I do hope that you can enjoy sometime outdoors etc. This disease is indeed dreadful and relentless in the way it destroys lives. Just remember that it helps your loved ones in this process by allowing them to look after you. You may feel helpless and dependant but it really does help us carers to be able to do something for you. Wishing you peace and best wishes.

[Leniko]

I’m so sorry. Was there ANY talk about Targeted or Immunotherapy? Much less caustic than chemo. Praying for you both during these tough times! 🙏❤️

[Alfie2024 in reply to Leniko]

Hi Leniko, the 2 cycles of platinum chemo included immunotherapy of Atezolizumab which the oncologist thinks may have contributed to the massive inflamation that my partner suggered which caused the lymph nodes in his chest to press upon his heart causing pericarditis. Seems there are no further options for us. thank you for your thoughts though much appreciated.

[Leniko in reply to Alfie2024]

Oh no. I’m So Sorry to hear. What a difficult time for the two of you. I am sending prayers on your behalf. ❤️🙏

[Babydolltina]

Hi Alfie, so sorry to read about your partner and both of your issues with this awful disease. My late wife was exactly the same as you describe what is happening with Alfie and I was doing the same as you. As treatment is happening sadly it's the same. I spent months sat beside her whilst she just slept after Chemo and Radiotherapy. You have made the right decision to stop treatment, as it does limit things. My advice is to just do what you can do with Alfie and try and make him as comfortable as you can.

God Bless and I hope you both have a good few months left to make memories.

John

[Alfie2024 in reply to Babydolltina]

Thank you John for responding. This journey is a cruel one and I know that others like you have also had to go through this. My heart goes out to you as you navigate your life without your wife. We are lucky that we have had 30 years together, living, laughing and loving all of the way. Thank you again.