Mum was diagnosed with T4 N2 Lung Caner last September. She's had 4 sessions of chemo (didn't work) at the end of last year/beginning of 2019. Then following a delay they then decided to do radiotherapy which was further delayed due to a pleural effusion. It was supposed to be 12 sessions but then was changed to 4.
Anyway, Mum has had a really rough time of it and has lost a lot of weight and it is not helped by her not eating.
In May when I was able to attend, (I live 300 miles away) it turns out mum had another pleural effusion so they couldn't read the x-ray to see what effect the radiotherapy had. She went back to the hospital a week later to get the fluid drained and was advised not to as the previous time it hadn't achieved much and mum was in a huge amount of pain when they had previously done the procedure. A permanent drain was talked about, but nothing done, expect wait to see her oncologist 2 months later!
At this point it was only on reading the forum that I heard about the fortisips nutritional dink and I had to send mum details and she had to ask the doctor about this, that they then prescribed her the drink to try and boost her strength and encourage her to eat.
Anyway move on another 2 months and she saw him on Friday. Mum has refused any further treatment (although to be fair the doctor had previously said they wouldn't do anymore chemo & no further radiotherapy on her lungs no matter what) & does not want a scan done to ascertain prognosis, etc, so she's now being passed to another hospital for what I understand to be palliative nursing, but that isn't for 3 months and the hospital visits are in theory going to be every 3 months.
Given that she's seeing the palliative nursing team only every 3 months, does anyone have any experience or knowledge of what is likely to happen/be done when Mum does attend and also why only every 3 months?
I'm very confused in any case why there has been such a long time in between appointments, typically at least 2 months every time with the oncologist, but with the latest info saying even longer in between the palliative nursing it feels like they've given up on mum, but have also not been very forthcoming on what she can expect with the various appointments and why they are doing what they are and no guidance or explanation of anything either.
Any thoughts would be appreciated.
I do get that mum is handling this the way she is because she is scared, but I'm also trying to get a sense of what is going on because it's incredibly tricky given the distance I am away from her and with a small child I can't leave and who I am going to have to prepare at some stage for the worst news about granny
Thanks for reading x
I'm afraid that I can't answer your questions but I noticed that your post had gone unanswered and by replying to you it will 'bump' it back to the top of the page.
If you still don't get any replies you could post your questions in ask a nurse and one of the specialist cancer nurses will respond within 2 working days.
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So very sorry that you find yourself on here.
I can't help other than to suggest you ring MacMillan on the free phone number 0808 808 00 00 (8am to 8pm). They will be able to help you.
Having just read your story I feel like I could have written this myself.
My 69year old Mum was diagywith T4 lung cancer last September. She endured 4 rounds of harsh chemo before going on to 3 months of maintainence chemo. I also lived 300 miles away and spent evenly month driving back and forth for her appointments and chemo sessions whilst trying to hold down my full time job. In May this year we got the devastating news that the chemo had stopped working and her cancer had become active and aggressive and she also also developed malignant pleural effusion. She shortly after had a chest drain fitted which required draining x 3 a week.
It became very obvious that Mum couldn’t live on her own so far away from family as she needed support. I took the decision to move Mum in with me in my own where I could be around to look after her. I now do her chest drain and am around to help her. Unfortunately this also means I am seeing the slow decline each week which is heartbreaking.
When I transferred her care to my local area I also contacted Macmillan who were wonderful in getting Mum referred to a local hospice where she now attends once a week for palliative support.
I understnd your frustration with the length of time things take, we were the same but you need to keep pushing. My Mum has now also said enough is enough and is not having any further treatment. With her having malignant pleural effusion it’s now a waiting game until she starts to deteriorate.
All we can do is just support them and if you are worried about length of time, ring the Oncologist or ask to be referred to a MacMillan nurse who can help push things along.
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