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Original poster

Macmillian nurses?

30 replies

tots2ten · 15/09/2008 22:49

My mum has been diagnosed with stage 4 lung cancer. Mum is starting her chemo tomorrow but today we have spent the morning at the hospital as she started coughing up quite a bit of blood (sorry tmi) her oncologist has assured us that this is normal.

I am shocked that my mum has gone down-hill quite rapidly since we have been told that she has lung cancer (about 3 weeks ago) we sound today that she gets very breathless, my sister had to get the car as there was no way thst she was able to walk any further. Also while we were waiting for the oncologist we had breakfast and she could only eat a piece of toast and complained that she felt bloated.

At what stage would mum be offered the help of the macmillian nurses?

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SilkCutMama · 15/09/2008 22:52

Soon I would think hon

I am so sorry to hear about this - love to you and your family

Horrible illness

We are here if you need us

Original poster
tots2ten · 15/09/2008 22:56

silkcut, I am so sorry about your dad (i just saw your thread)

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SilkCutMama · 15/09/2008 23:00

tots - Thank you that's so kind when you are going through your own stuff

I'm afraid to say this is what my dad died from

He fought it all the way and has been ill for a long time though

You could always phone the hospital and ask when macmillan nurses wll be available to you

Original poster
tots2ten · 15/09/2008 23:05

I am going with her tomorrow for the chemo, so i will ask the nurses there, along with my ever growing list of questions.

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ThingOne · 17/09/2008 21:33

The specialist nurses may not be "macmillan" nurses in your mum's hospital but there will be someone available. If not ask to be put in touch with your local hospice. They will have nurses to talk to.

Hope chemo went OK yesterday.

UniversallyChallenged · 17/09/2008 21:44

Sorry to hear about your mum tots you must all be going through a really rough time.

Dh had cancer diagnosed in April and the Macmillan nurse saw us the same day.She was at the other end of the phone if ever we needed her and helped him when he was in hospital during surgery but it tailed off during his radiotherapy when I really needed help and called them, felt fobbed off tbh. Wish I had been bit more forceful and asked to be referred to the local Mac nurses. I presumed they would do this and the local Mac nurses would be in contact but this doesnt happen.

Now we have had visits from our local ones and they are great so maybe you have slipped through a net if she hasnt had any contact.

Look in your phone book to the Ian Rennie nurses if they are in your area, they are great as well xx

Original poster
tots2ten · 18/09/2008 23:10

Mums chemo went well (if that is the right phrase) yesterday she was fine, but today the sickness has kicked in. I asked about the Mac nurses, and at the moment we are only referred to them when the case becomes complex

My mum has been told that she has to get out of the house (and do normally, daily activities) because at the moment she is only going out for hospital appoitments. The nurse in the Chemo day unit told her that it is no good sitting in the house and that she needs to be more positive, mum's response to that was, what they wanted to hear, she was all up for the idea of borrowing a wheel chair so that we can go out for a few hours, without her becoming tired as fast as she does. Now she wont hear anything about having a wheelchair, apparently she never agreed to having one!

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ThingOne · 19/09/2008 02:09

I think it's shite she's not getting access to a macmillan nurse. Are there no other specialist nurses in the hospital? My specialist nurse was in the room when I was given my formal diagnosis and has been on hand for me ever since.

Do you have a local hospice you could call?

Original poster
tots2ten · 19/09/2008 06:20

We have a local hospice, but my grandfather (mum's dad) died there, and as soon as it is mentioned she starts shouting at us.

We have a respiratory nurse who works with my mums oncologist, and we have her phone number as a contact, and she is lovely, if she is not in the office, she will ring back.

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madamy · 19/09/2008 06:33

You do not need to wait to see a Macmillan nurse, they are there for every step of a patient's journey through cancer, even for those who have a curative cancer.

There are hospital and community mac nurses, so if your hospital is being awkward (I am a hospial chemo nurse and find that attitude appalling tbh!) you can phone your GP and aask them for a referral to a community Mac nurse. Do it today!! Alternatively, give the respiratory nurse a ring - ours will help with referrals to mac nurses.

Mac nurses are invaluable for emotional and psychological support not only for your Mum, but for the family as a whole.

meebles · 19/09/2008 08:01

You could also talk to the district nurses (prob contact through your gp surgery) who might be able to help - either with a referral or support themselves.

ChirpySquawkPiecesofEightGirl · 19/09/2008 08:07

Morning tots, you're up early! Am in office today but thinking of you.
I would def try and call the nurses yourself rather than wait for a referral as it might be the 'extra pair of ears' that your mum needs IYSWIM. That way there is someone for her to talk to who she isn't putting on a brave face for and might make it easier for all of you. xx

nailpolish · 19/09/2008 08:20

ask her gp about the macmillan nurses. referral might get done quicker that way. IMO she should be referred now

best wishes x

Original poster
tots2ten · 19/09/2008 09:24

hiya, chirpy im always up early, i can't sleep i keep waiting for the phone to ring. (i was wondering where your car was this morning!! thought your dh took it to work) She is not even putting on a brave face, yesterday she refused to talk to me (and everyone else), I was standing in the living room 'trying' to talk to her and she just starred at the tv, and snapped at me when i called her! I phoned my aunt in tears and she is coming over on saturday to try and talk to mum.

madamy it was the respiratory nurse that told me we wont be referred until the case becomes complex. Can I just ring to ask about a macmillian nurse?

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onlyjoking9329 · 19/09/2008 09:34

Sorry to hear about your mums diagnosis.
When my DH was DX with a terminal brain tumour we were not offered a Mac nurse by the hospital, i phoned our GP who sorted it for us. we have had our fab community Mac nurse for a year now and she has been a huge support on many levels, our community Mac team are based at the hospice do you have a local hospice?

Original poster
tots2ten · 19/09/2008 10:16

Onlyjoking I followed your thread, I am so sorry for your loss. We have a local hospice but it is where my mum's dad died, and just the mention of the place makes mum get angry

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sweetie66 · 19/09/2008 13:42

So sorry to hear of your Mum's illness. My Dad had the same and it was very hard for him. Please push to get a Mac nurse if you can. We had one and my Dad told her lots of things about how he really felt, worries he had, pain and how he wanted to look after us, which he would have never said to us directly. She also chatted to the whole family and let us vent our anger out on her understanding how we felt. She was a rock to our Dad and family and we were very glad to have had her with us. My thoughts are with you.

Original poster
tots2ten · 19/09/2008 14:09

My mum is refusing to talk about anything to do with her illness, as soon as something is mentioned, for example, i was arranging with my dad (he doesnt drive) about taking her to chemo next week, and for her MRI scan, she started shouting and locked herself out the garden where she couldnt hear us!

Sweetie66, I am sorry to hear about your dad. thats one reason i really want my mum to have a mac nurse, so that she can have someone to talk too, as she is just pushing us all away, there is no eye contact when/if she does say anything to us, and my poor dad is just barked orders at.

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RubyRioja · 19/09/2008 14:16

This reply has been deleted

Message withdrawn at poster's request.

lou031205 · 19/09/2008 14:40

Hi tots, I am so sorry to hear of your mum's diagnosis. Just on a practical note, she should qualify for fast-track DLA.

Original poster
tots2ten · 19/09/2008 14:49

She is already on DLA, she has had a DS1500 sent in, so we are waiting to hear about the change in circumstances.

i managed to get the doctor to prescribe Fortisip drinks.

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RubyRioja · 19/09/2008 14:51

This reply has been deleted

Message withdrawn at poster's request.

Original poster
tots2ten · 19/09/2008 14:54

mum doesnt seem to want to fight we are all fighting for her buts its hard trying to get it through to her that she has to fight with us too

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UniversallyChallenged · 19/09/2008 16:26

How about not calling it a hospice but referring to it as a respite unit? It freaked me out when dh was going to go to a hospice due to the usual thoughts of one, but they are great invaluable places.

That isnt true about the Mac only being there if it's complex. There are there for anyone being affected by cancer. Even if your mum doesnt want to see them, you may want to. Contact the hospice/respite for YOURSELF to get help and advice if you need it- no need to even talk about it with your mum if it upsets her too much.

Have you looked at the cancer website? I thibk it's called cancerbackup, will go and check for sure

Original poster
tots2ten · 19/09/2008 16:57

I have looked at cancerbackup and cancer research UK, both have been really useful, as I was given mum's stage/type of cancer (my mum doesnt want to know this, but i needed/wanted to know) and both websites have been really good for information regarding treatments and side effects.

My aunt (mums sister) is coming over tomorrow to try and talk to mum, as i was in tears on the phone to her (aunt) last night, after trying to have a conversation with my mum.

I only just found out that my mum nursed my dads father and he died of Lung cancer (i had no idea this is what he died of), i knew he had cancer. I was talking to my dad this afternoon about getting a macmillian nurse

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