Dad 'not ill enough' for Macmillan - any other cancer support out there for him?

[StopTalkingAndEatYourDinner]

My dad has recently been diagnosed with pancreatic cancer and has had major op to remove the tumour. He is still very ill from the surgery and has just started a 6 month course of chemo.

His oncologist has told him the cancer has a significant risk of coming back and I was so hoping him and my mum would get some support from Macmillan nurses. His GP referred him but as he does not technically have cancer now (it is in lymph nodes but no secondary tumours) he does not qualify.

Does any body know of anywhere else they might get some expert support while they are going through all this? Happy to pay, just not sure where to look?!

All advice very gratefully received!

try Marie Curie www.mariecurie.org.uk/

or Tenovus but I do not know if they do home support www.tenovus.com/

Thanks so much Lonnie!

Marie Curie only work with people who have terminal cancer I think but Tenovus looks great and appears to offer telephone support and advice which is perfect for my parents.

Will pass on the info x

I'm surprised you've been told he doesn't qualify...cancer is cancer and unless he is actually in remission, which it doesn't sound like, it's very strange that they have told him this...who told him he didn't qualify?

I've spoken to Macmillan a lot and they always say they will help at any stage of cancer. That's what they are there for.

Adding to this how aggressive pancreatic cancer tends to be and I would really think there has been a mistake somewhere. I'm really sorry about your Dad x

I hope this will give you hope We lost a relative to pancreatic 2 years ago- told too late for treatment- so was delighted to hear yours got treatment. We cross our fingers for you. We had Macmillan but not impressed- the lady was very smartly dressed but we hardly saw her- seemed like shewas on a lunchbreakouting Wewere v taken aback at lack of nursing assistance The only thing she did do was discuss the medicines and as we are medically qualified it was no use-we needed hands on They recommended a nursing centre and it wasawful -we did not have to pay and thank goodness as it was rubbish. We ended up in the NHS as she had a stroke - a stroke is often aside effect of this cancer by the way. If we need any help or just want to talk feel free to send a private meesage. We would like to hear how things are going - sounds like things are mproving for this cancerxxxxxxx

Thanks Ingrid. I was surprised too, they wrote to him and told him that it was for people living with cancer and that as he has had the tumour removed he was not considered to have cancer at the moment. He is so, so ill and really struggling with it all.

Actually, I think I might give them a ring myself and see what they say. Will let you know!

Do you have a local hospice?

That is absolutely bloody typical of Macmillan! We were so disappointed in the support the Macmillan nurse offered my bil and sister when bil was terminally ill and I have heard a number of other stories. That said, the Macmillan nurse who worked at the local hospital was very helpful when we hit a crisis point.
I'm sorry about your dad - is there a hospital social worker involved? You might get more help from them.

The local Macmillan office is based at the hospice but he isn't terminally ill so no contact with the hospice, only directly with the Macmillan office via the GP.

He has private medical insurance so receiving chemo at a small private hospital, no social worker there that I am aware of but will certainly call and find out.

Ironically he has had a monthly standing order set up to donate to Macmillan for years!

Thanks so much for your posts, it has made me even more determined to sort out some extra support from somewhere for them! Tried to call Macmillan today to clarify the situation but offices closed til Monday so will try again then.

Do you live in Scotland by any chance? If so the Maggie Centres are very good I understand.

I think it depends on what support your father actually needs. It sounds as though he just needs time to recover from the op and then to get through chemo. I went through this last year, for breast cancer. The chemo nurses will be very helpful - if he has nasty side effects he must tell the staff promptly and they'll be able to adjust dosages to help. Chemo isn't pleasant - its a long slog and at times very tiring, but its doable, and if your father is otherwise fit and strong, he';ll be able to manage as long as someone can take him to each chemo, bring him back, and be with him for the few days afterwards when he'll be feeling rough.

Chemo also varies a lot - some drug regimes are more aggressive than others, so knock you out a bit more. A lot of people have a mix of medication - but everyone is really closely monitored.

I think he(and you) will need to take one step at a time - he should recover from the op within about 3 weeks and you might then find he's ready and up for the chemo.

The McM nurses will probably be able to provide lots of leaflets and booklets and you might find tht once he's got to to know the chemo centre, the help will be more available. But this does not mean help at home unless he's really seriously ill. Personally I did find it helpful to be able to read up on the cancer and the various, complicated treatments.

Chemo can have serious side effects and if that happens he'll probably be admitted (eg if his immunity sank very low). He'll be given very detailed advice on what to check daily (temperature) and he'll be given a hot ine to ring if he is worried. I did use this and found the staff v. helpful.

I know its scary but try to not to worry too much and to take this one step at a time. I found it helpful to deal with what I definitely knew, rather than assuming the worst.

Does he have a circle of friends? I found people really rallied round, which was also very much appreciated eg offers of lifts, the occasional meal being made for me.

Good luck.

Sorry - just re-read your last post. I do wonder if being at a small private hsopital may have disadvantages. I was treated in a big NHS cancer centre and macmIllan had an office and centre there with staff to talk to, and loads of materials. perhaps you could find out where his local NHS hospital is in case it has similar.

I was quite shocked to read your post. I am in Scotland and often refer patients to Macmillan. Many of these are terminally ill but some are just struggling with diagnosis or post surgery and the feedback I have had has been very positive.

I do hope you get some help for him.

Your Dad should have been introduced to a Mac nurse from the beginning, they are not only supposed to be there for him but for the family also. My husband has been fighting bowel/liver/lung cancer for over 3 years, we have been very disappointed with the level of support from our Mac nurses. My lifeline has been to join the Macmillen website, meeting others in the same boat, as patient or carer. You can also phone one of the Mac nurses if you need someone to talk to. I have made some very special friends thru this site. I wish you Dad a full recovery. xx