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Mt mum was diagnosed with stage 3B NSCLC Adenocarcinoma around 18 months ago. She's been doing ok following maintenance treatment - immuno (stopped 4 months ago due to side effects) and Pemetrexed, stopped in Dec following a small increase in tumour (5mm), radiotherapy then advised. Intensive treatment over 3 weeks and then break from treatment for six weeks until next scan. Scan results then showed small spots on liver (1mm/ 2mm), although lung tumour reduced by 30%. However mum then developed a tumour on her rib. Had 1 shot of intensive radio - right next to rib and for a longer period. She was then due to start chemo again to deal with the liver spots, but when she went for treatment they said her temperature was too high and referred her to A&E. They found she needed a pleural effusion and admitted her (lots of messing about between 2 hospitals before this happened). She had been in a lot of pain for about 3 weeks which we put down to the radiotherapy (they said it would hurt), but it appears it may have been this. They did a drain yesterday, but since then, not being able to visit mum, we have only been able to receive messages via WhatsApp, and she keeps saying the pain is unbearable. I spoke to the Nurse on her ward last night and they said she was doing ok, and they were waiting for her x-ray, and she had been started on new antibiotics. However, we keep getting texts saying she is in the worse pain, and then no communication from her at all. We don't know if its normal to feel pain afterwards, we are not sure what happens now. She seems to be on morphine. Is all of this usual? Should she still be in pain? Could the morphine be making her feel worse>? Will she start to feel better. Anything anyone can tell me would be very welcomed. Ive been combing the internet and can't seem to find any information about pain following a pleural effusion.

Thank you

chellesimo over 3 years ago

Hi Nmar1 I am so sorry that your mum is currently in hospital. It must be so hard to have a loved one in hospital, and not be able to see them. I can imagine how distressing it must be to have messages from your mum saying she is in pain. I know you said you have been googling information, but I have put a link HERE for you for the Macmillan Pleural effusion information sheet.

I am sorry I don't have any personal experience with this, so cannot answer your questions. You could ask these questions on the Ask a nurse page. You could also call the Macmillan support line to get some advise about this procedure, and its after effects. They are available on a free call number 7 days a week, from 8am until 8pm on 0808 808 00 00.

I hope your mum starts to feel better soon, and you get to see her.

Take care

“Try to be a rainbow, in somebody else's cloud” ~ Maya Angelou

Chelle

Fi 21 over 3 years ago

I’m so sorry to hear about how sore your poor mum is in. Can I ask which rib she had her problem in. Is it high up near her collar bone or lower down ? My mum has recently been diagnosed with same cancer and is in absolute agony . Her cancer is at the back top , left and she’s needing her pain sorted. Put her on morphine too , but she had to come off cos of the side effects ( sickness etc) I’m phoning them tomorrow to ask if she can get reviewed. Treatment plan this tues . I hope they can help your mum soon . I didn’t realise they still aren’t letting people visit. Does your mum have a specialise nurse co ordinating things? Could they give you permission to visit ? I attended with mum 2 weeks ago into hospital cos mums quite deaf snd to the nature of her condition ( cancer ) x

Nmar1 over 3 years ago in reply to Fi 21

Hi Fi

I'm sorry to hear about your mum. It's just so awful to feel so helpless and at a loss to support your mum isn't it. The rib my mum had the tumor on was lower down on the ribcage. She's still in hospital - 7 days now, and most pain has subsided, or is lessening. but her temp is still up which is puzzling the doctors. It's complicated for my mum in terms of specialist nurse support - she is being treated by 2 different hospitals - Addenbrookes for the cancer and Peterborough for the plural effusion, and her appointed nurse at Addenbrookes has not been particularly helpful at all, and has changed several times. I'm slightly miffed and getting more and more irritated by the lack of joined up thinking from both hospitals. Neither seems to be talking to one another, and do not see the plural effusion as a consequence of the original lung cancer. Mum seems much better now in terms of pain, and we have asked to be able to see her several times, but we are not classed as carers. It just makes you so anxious everyday not knowing what is happening. How is your mum?

Nicola

Fi 21 over 3 years ago in reply to Nmar1

Oh I really feel for you , that must be awful not knowing snd not having a single named person co ordinating things must be sooo frustrating . I find that even the way people say things to you can make you feel that things are more negative than they are or maybe give you false hope . Last week the nurse told mum she had the most common type of cancer and this week we met the oncologist snd I felt the Dr was trying to indicate that things were very bleak. . Guess it depends on how we are feeling at the time too ( stressed , tired, emotional ) I hope you get some answers soon . Could you ask to make an appt to chat to your mums consultant ?
sending love , Fiona

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