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Life-limiting illness

Mum given McMillan phone number ???

8 replies

nemno · 06/06/2012 16:23

My poor Mum has had a scan where they found lots of nodules/things on her lungs and liver. Now lots of her symptoms match Sarcoidosis but she has been referred for biopsies. The thing that has frightened her most is that the respiratory consultant said as she left that he probably should give her the card with McMillan phone numbers on. Also he said that he was looking for an underlying cause. Given the biopsy is still more than a week away and the results appointment more than a week later she is already incredibly fearful.

Honestly, should she be reading a high likelihood of cancer into this? I wasn't but her fear is worrying.

Also she and Dad are of a generation that don't ask questions and won't let me. So I turn to you please.

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maybenow · 06/06/2012 16:26

Call McMillan - they are great and not just about cancer but about this phase too where it could be one of many other things.. they know about various liklihoods and i think you can talk to them too (not just your mum) because they're not her doctors.
Many people would be worried about cancer as soon as they knew they were waiting for a biopsy so that's why the doctor will have given her the number to call to talk through her worries.

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nemno · 06/06/2012 16:39

Thank you for replying maybenow. I will talk to my dad again and repeat what you said. I think it highly unlikely that they will want to talk to anyone, for them counseling is a dirty word as is letting the stiff upper lip slip in front of friends. It's what daughters are for....not that they listen to my opinion though.

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nemno · 06/06/2012 16:44

Oops, I've looked them up, it is Macmillan. Sorry

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nosleepwithworry · 06/06/2012 16:47

This sounds like the consultant may well be thinking that these nodules are secondary cancer and that there will be a primary somewhere.

I just despair at the fact that these Drs do not spell things out in plain english, black & white for people.
You need to know this information at the earliest time.

My advice to you, is to contact Macmillan as soon as you can for several reasons:

  1. They can advise on all kinds of cancers, they have booklets and help lines, not just for parents but for you too.
  2. They can advise on such things as benefits, this is important, even retired folk are entitled to financila help. This is very useful for things like parking expenses for hospital appointments etc.
  3. They can get in the help and services that your mum is going to need, this takes time and planning, so the sooner the better.
    4)They are a great support.

    Your mum & dad dont need to contact them, you can do it, just to get prepared and to arm yourself with the knowledge that you need.

    My family have unfortunately just been where you are now, i feel for you x
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nemno · 06/06/2012 17:01

Sorry you've been through this nosleepwithworry. And thank you for your advice.

I will do all that you recommend but I was/am still hoping there is a chance that what you describe is only one of the things that they are looking for.

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nosleepwithworry · 06/06/2012 17:06

Of course, it could be any number of things. I REALLY hope it is innocent and easily treated for your mum xxxx

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Cloudbase · 20/07/2012 20:15

The fact that they have given you the number of a McMillan nurse doesn 't mean it's definitely cancer, but they obviously have to rule it out with a biopsy.

Of course it's a possibility and you need to be prepared for that, but I work with a McMillan nurse and lots of their patients do get non cancer diagnoses too.

Honestly, ring them and use them to get the support you desperately need. Your parents may not be the 'talking' types, but you need support too. Take care

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golemmings · 25/07/2012 22:20

My mum had a whole load of respiratory problems - not cancer - but was given a contact at mcmillan because they really are the best people for knowing about support, advice, funding, care etc for serious conditions.
I hope everything is OK for you and your family.

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