My Mum has just been diagnosed with terminal cancer

[sphil]

We found out yesterday that my mum has a huge tumour obstructing her bowel, further tumours elsewhere in the abdomen and secondaries in the liver and lungs. Having an emergency op today and then we'll see the oncologists afterwards. But it doesn't look good. I can't believe it - she's 72 but looks and acts more like someone in her 50s. My Dad is in pieces - they've known each other since they were 17 and 18.

Just want to know what to expect really. I know how bad it is - the drs didn't mince their words.

Oh you poor thing. How awful. I am so sorry.

I have no advice but didn't want your post to go unanswered.

Unfortunately there are lots of people on here who will have first hand experience.

I'm really sorry for you. I don't really have an advice but didn't want to pass on by

My MIL died from a rare kind of brain cancer 3 years ago and all I can say really was that the Macmillan nurses were fantastic. She spent her last few months at home and her and my FIL had so much support.

Take care xxx

Do you know how we go about getting a Macmillan nurse? My Dad is going to need support at home and I know my Mum would appreciate someone positive to talk to. She is being so calm - just worried about how we're all feeling .

So sorry for you and your family.
Maybe if you ask at the hospital about Macmillan nurses, I am sure they will be able to help.
As for your mum, she will need to know that you will all be alright (typical mum) and so I do agree that someone like the Macmillan nurses can help everyone come to terms with this awful thing.
Take Care

I'm so sorry what dreadful, dreadful news for you all.

Bumping for you till someone can give you Macmillan info/experience.

I'm so sorry to hear this.

I have no experience but didn't want to go without saying anything.

I am so sorry for you and your family.
My Mum,65, was told this time last year that she had brain cancer and had 18 months-2 years left.
Sadly, she didn't even make it that long and we lost her in June.
Although their illnesses are different, the situation is the same. It was the worst thing I have ever witnessed. I miss her terribly. Every day is empty without her in it.
Take all the counsilling that is offerred to you, you will need it.
Lots of love to you and your family.

so, so sorry to hear this. My mum was 54 when she died, two months after being diagnosed with pancreatic cancer and it was awful. Ask the oncologist about Mac nurses - they are great. They will prob refer your mum anyway as she and your dad will need help if she returns home, but see if you can talk to anyone. The nurses working on such wards are normally a fantastic resource. All I would say is spend as much time as you can with her, tell her you love her and don't beat yourself up when it gets too hard or you feel like crap - it is normal. Keep yourself busy doing little practical things for your mum and dad and make sure that you talk to those who can support you - partner friends etc. Accept help for yourself too - don't do too much or carry too much on your own.

best wishes to you and your family.

I think my MIL got help from Macmillan nurses through the hospital. She was in for months before they realised what was wrong with her and once she had a diagnosis she was discharged with support from Macmillan nurses.

Definitely talk to your mums doctors. I hope you and your family get through this ok, such a difficult thing to come to terms with.

so sorry to hear this

we lost my mum to lung cancer at the beginning of this year.

She had support from MacMillan Crossroads and also had a Marie Curie nurse who used to come and sit with her at night to let my sister get some sleep (she stayed at my sisters for a few months until she went into the hospice). I'm pretty sure it was the hospice who organised all of this for her as she had been attending as a day patient a couple of times a week prior to her needing full time care.

The MacMillan nurses and the Marie Curie nurses were fantastic. Very supportive for both mum and the family, and helped make her last months a much better time than they might otherwise have been.

Oh sphil I'm so sorry to hear that. I know quite a few people who have had bowel cancer - I think what happens next is very different from one person to another and doctors often can't accurately predict how long someone has left to live.

Thinking of you all and hugs xx

Oh I am sorry to hear this. It is just the kind of cancer my mother died from -- bowel cancer with secondaries in liver.

I know it isn't easy to generalise from one case to another, but for my mother, her last months would have been so much better if she had not had chemo. It made her feel awful and there was no gain from it.

All cases are different of course, but if I went through this again I would try to give my mother thwe resolve to say no to chemo.

She was actually quite reconciled to dying, but the option of chemo just seemed to unsettle her. I think she somehow thought it would be impolite, or making trouble, or unfair on her children or something to say 'no chemo'. Or perhaps it was just that she was too poorly to resist what seemed to be the momentum of the situation. And it made her so ill.

Her death was fairly peaceful and pain-free. She was quite confused at the end.

Anyway, all my bset wishes at this very difficult time.

Oh my goodness sphil, I'm so sorry. I know I've only met your mum once, but I feel like I know her because she's featured so much in the videos. I'm stunned she's 72 (I would have guessed early 60's).

My Mum is a district nurse so if you have any questions about the way things work in the community email me and I'll ask her. I think the hospital refer you to Macmillan. The district nurses are often the co-ordinators for everything though, you can ask your Mum's GP about the services they can provide.

Thinking of you all.
xxxx

sphil I'm so sorry to hear your news - I don't have any advice but just wanted to send you my best wishes

Thanks so much everyone. I've read so many of these kinds of threads on MN and people always say how much they value people posting - well it's really true. I feel as if I'm walking through treacle atm - or like the world is behind a plate glass window. Have absolutely no idea how I'm going to handle it with the boys - DS1 dotes on my Mum (she's always top of his list of favourite people, above DH and me) and DS2 - well JJ, you've seen how great she is with him. That's almost the worst thing about it - her loss to the DSes.

They were going to operate today but decided in the end to put a stent in to open the bowel. I think it's because the tumour is inoperable and they don't want to put her through a major op for nothing. Thirty minutes after it was done she was sitting up in bed eating toast and drinking tea! She doesn't look unwell at all atm, so it's very hard to come to terms with how ill she is. She is being completely amazing - calm and strong. We're seeing the oncologist tomorrow to arrange chemotherapy - but it will be to hold the cancer at bay rather than reduce it at all. Apparently the tumours in her lungs and liver are 'extensive'.

As well as feeling devastated, I'm very angry -she's been going to the GPs since June with stomach aches and changes in bowel habits - and has been fobbed off each time. It was only when we persuaded her to go back for a final time two weeks ago that the GP finally referred her - and by then it was too late. They sent her for a colonoscopy and gave her Picolax to clear the bowel - which as far as I can tell is completely contraindicated if someone has a bowel obstruction. She was in agony of course - they examined her again, told her it was fine to take a second dose and sent her home. Four hours later she was back in A+E, where she sat for 4 hours before being given a painkiller . This was on Saturday and on Sunday (god, only yesterday) they gave her a CT scan and we were told this.

We are speaking to a Macmillan nurse tomorrow and I'm ringing a friend who is an oncologist tonight. DH is being fantastic and speaking to the relatives that my Dad can't face phoning. We're all pulling together in fact - thank God we're a strong family. But I still can't believe it's happening.

Sorry - this is a bit of a rabbit...

Sphil

Really sorry to hear this. My MIL has terminal cancer at present. Was in the bile duct but has spread to the liver and we think its now the pancreas. She lives in the Middle East so that makes it harder for DH. They told her she had 6 weeks to live initially so DH flew right out there and spent a month with her.

Remarkably, nearly three months post diagnosis, she is still with us so the doctors aren't always right in their prognosis and although she is on regular pain killers, she seems reasonably ok in herself so that is a comfort.

I've been onto the Macmillan online forum and been chatting to other people in similar situations and its been very helpful - you may want to join that for advice, help and support.

All the best at this sad time and much love

Sorry to hear this Sphil.
I lost my dad in the summer to cancer. It is impossible to predict how your mum will be. That is not within your control but there are some things you can take control of and I would urge you to do so. Do everything in your power to ensure your dear mum is not inpain. Listen to her, laugh with her, be close. In all the awfulness of my dad's illness I have to say we shared some of our closest most tender moments.
Never give up hope, obviously prepare yourself but always hope.What you hope for will change over the coming months but always have it.
Let your children see you are sad.
Be kind to yourself.
Choose some good friends you can sound off to, a bit removed from the situation. They will be invaluable.
Keep that sense of disbelief. Why should you believe it? It's awful, unfair, dificult, heartbreaking. I still don't believe what happened to my dad, you just accept that you will live with that.
Wishing you strength. x

I've seen some of your posts about your MIL JimmyChoos - she sounds amazing! So difficult for your Dh and you that she's so far away.
Spudmasher - that's a lovely post - thank you. My Mum was determined to give her Mum (my grandmother) what she called a 'good death' - so she and all her sisters moved in to her house while she was dying and looked after her and one another. My Mum still talks about it as a really special time - and we're all equally determined to make whatever time she's got left as good as possible.

I am so sorry to hear your news Sphil. This sounds really hard.

I'm sorry she's had a rough time of it to date as well, but in my limited knowledge of bowel cancer (I am a hopefully non terminal patient) it would have already spread long before she first saw her GP in the summer. But the stuff about the picolax is pants. You must be cross. Can't imagine why they didn't give her a CT scan beforehand. VIrtual hugs form me.

Thanks ThingOne.

Am so sorry But please don't spend time being angry with the misdiagnosis as this will take away from being with your mom.

When my grandmother died, my mom told my grandfather about the medical negligence. He didn't speak to anyone for 72 hours and then told my mother, 'I never want to hear about that ever again...'

Of course you are angry, but put it on the back burner for awhile.

It's a mixed blessing to know one has a finite period to live.

sphil- your mum is amazing. I can imagine her being very calm and organising her family. And yes she is fantastic with H & N too.

I hope now the hospital have a dx they improve their treatment. I'm sure they will. Oncology wards/depts are usually fantastic.

Cxxx

I've this posted on a chemo thread earlier today hopefully you might find it useful too.

I've been recommended a website called Winstons Wish and have bought a couple of books from them to help too. One is for children, it's called The Secret C. My daughter has found it very helpful as it looks at all a child's emotions, for example, explaining that actually, yes, you can still laugh and have fun when someone close to you is very ill.

The other one is As Big As It Gets which is for parents and carers.

As said earlier in the thread Macmillan are great. They've now merged with CancerBackUp and offer all their free booklets and fact sheets here I got loads of them when dh was first diagnosed, all are free and they helped me to feel a lot more informed and know what questions to ask.

Hugs Kx

Have just spoken to a friend of mine who's an oncologist - she recommended Cancerbackup too. Thanks for the link to Winston's Wish - I was trying to remember what it's called. I'm a bit anxious about talking to DS1 as he tends to become a bit obsessed with death and disease related subjects.

Oh Sphil, I've only just seen this. I'm so sorry. My grandmother died of bowel cancer - similar situation in that she had been going to the doctor for ages complaining of changed bowel habits etc. The Macmillan nurses were very supportive too. Sorry I have nothing else useful to contribute except I will be thinking of you .