devastated

[daveenatilson]

my mum got her results bk today from her scan and has been told there is nothing more they can do for her im totally devastated as i cant even see her as i live in cornwall and mum in sheffield, i just cant get my head around it dont know how im gonna cope. i was in sheffiled last week and now ive come home this has happened just keep crying

[sunny1]

So sorry to read this post is it worth your Mum getting another opinion? Much love xx

K x

[BusyLizzie]

Hi,

There are no words to make it easier as this is the message we all fear. I have been asked if I want to keep trying, which is only subtly different.

My honest thoughts are it is really about helping your Mum to cope at this time. If there is no other family around her, perhaps you can arrange for Macmillan Nurses and District Nurses from the surgery to pop around to give her moral and practical support. As sunny said, if you Mum wishes it, get a referral from her GP to see somebody else. Ovacome will tell you the top people to see in the country, or locally if you call them. If she does not wish it, and there is no more treatment then you are both free as possible to spend time together where and when you want it.

Good luck to you both. You are not alone.

Love Lizzie

X

[Hidden]

Hi

We always hope for a happy result and it is always devastating when it's not. So sorry for the news you have received today. It is so very hard for you when cannot be there with her.. I think that Lizzie has given you really positive advice..

You will find some inner strength to cope, for both your sakes, when the intial shock has worn out and you find ways to help your Mother

Thinking of you and sending you a hug

Love Suex

[wendydee]

I'm so sorry. We cannot really offer you the way to make it better, but can only be there for you. The others on here have given good advice. We nursed my mother-in-law through terminal cancer last year and she had wonderful support from her surgery team, palliative care nurse at Macmillan and Marie Curie nurse also helped her in practical ways. We got in touch with a Macmillan social worker, via the website and office, local to where she lived. They referred her to meals on wheels, carers later on and support from her GP surgery. We didn't know how long she had and we decided to try and make as much time as she could to spend with her. We tried to be positive and talk about how much we'd appreciated what she had done for us and say all the things we wanted to tell her over the months we had with her. It's important to prepare for this, although I don't know how long she has. All this may be quite a long way off yet ...... I hope so. Do get onto Macmillan, Marie Curie, Sue Ryder and see what they can offer in terms of support for you, and look at whether there's a local hospice. They support with day visits and activities for months and sometimes years. I know this is all a bit much to take in for you just now, but I found activity, keeping busy, planning practicalities etc really helpful to offset the feeling of "sh*t ....how the hell are we all going to cope with this?"

You will cope. Keep posting on here, you have good support here.

Love Wendy xx

[daveenatilson]

thanks for all your comments and support its really good to know i can talk to people on here who understand, i think im still in shock we expected her to be ok shes only had 3 rounds of chemo and they told her if that didnt work they would try her with something else but as you know they have said no more treatment as its a rare type of oc, my mum was 68 last week and my dad 76 hes in a right old state my 18 year old son goes to uni in sheff and lives with them hes trying to hold it together for both of them i feel so useless dont know how i will get through this ive spent the night crying on and off. dont think i wll get much sleep tonight thankgod for computers, sorry for goin on but just need to get my feelings out and talk to people who understand .....thankyou everyone for you kindness xxxx

[BJ_UK in reply to daveenatilson]

Hi, I live in Sheffield and this is the link for the local hospice's web site.

stlukeshospice.org.uk/

They might be able to help, though you would need to ask for your mum to be referred to them. As it tells you on the web site, getting a referral to them doesn't mean that your mum is necessarily going to die soon, but it does mean that she would be being treated by people who are expert in providing care that relieves symptoms, when there is no care that is likely to provide a cure.

Hugs to you and your mum,

Barbara

[Hidden]

Of course you're in shock, and feeling helpless. We are all helpless in the face of our own death and that of our loved ones. However; it's not over yet, and your Mum might still find a way through. You said in an earlier post that she looks to you and your sister to find the answers. That makes it all the harder for you. I just want to state the obvious: you are not, and cannot be responsible for what is happening to anyone else, and especially a parent - although we try so hard to be, and to protect them.

Your son needs to know that too!

You sound like a wonderful, supportive lot, and - after checking out what outside support is available as others have listed - your role must be to support your Mum and Dad, and let them negotiate what is their way through this, whilst retaining sight of your own lives too.

With love,

Isadora.

[Whippit]

Dear Daveenatilison

You've done well to post on this site. You've had a terrible blow at just the time you were feeling optimistic expecting the chemotherapy to work. As Isadora says 'it's not over' and there will be time for you to spend with your Mum and Dad even though you live far away.

I have two daughters. One lives nearby and the other has a high-profile job in London. It doesn't mean that the limited time I spend with one of them is any less valuable or less cherished and this will be the case for your Mum. It might be you all need to talk to someone professionally about this. It has certainly helped us to cope.

One of the things we had to come to terms with was that my daughters both wanted to help and to get involved. This is a natural part of a loving relationship but for my part I want to keep my cancer life separate. I want to use the remaining time I have with my children to enjoy their company. It is a great source of happiness that they share with me their thoughts, their worries and so many aspects of their busy exciting lives. When the time comes I shall welcome support from the various professional caring services. I can't put my finger on it exactly but it's something to do with suffering and dignity. It may be as you all come to terms with this terrible blow you find your parents feel this way too.

There's also your son to worry about and my thoughts go to him. Just from a professional perspective (I work at a university) I would suggest you and he talk to the Student Services Counselling Team as soon as possible as to what is best for him and how they can provide support. If I can be of any help please do message me.

Take heart. You're among friends.

love Annie xx

[bosue]

Sorry about your news,I have one son and he lives in Cornwall,he has also been ill for about 2 years and not able to visit us (300 miles away) we make do with phone calls and Skype when we cant get down to them, I know its not ideal but a great help, it's nice your son is there for support, dont feel guilty, (I know easier said than done) will be thinking of you. Love Sue x

[SusanC]

daveenatilson,

I agree totally with Sunny, why not get another opinion? I have posted quite a bit re my Mum 71, she was told her recurrent tumor that was blocking her bowel was in-operable and that there was nothing else that could be done for her. Once I stated that she had a good quality of life normally and was very active and was not ready to go yet they had a change of heart and another surgeon operated and removed the tumor, she now has an ileostomy but at least they have given her more time. This may not bear any relevance to your dear Mum but just maybe someone else would be more willing to try something else.

Sue

x

[LizK]

Hi Daveena,

So sorry to hear your news, it must be very difficult for all of you. I definitely agree with others here that you should get another opinion especially as your Mum's only had 3 rounds of chemo.

You must also be worried about your son shouldering so much at such a young age, he must be a lovely and caring young man and I'm sure he will be a great support to both grandparents. I think you should follow Whippit's advice and see if he'll talk to the Student Services Counselling Team. Having had sons myself, one still a student, I know how reluctant they can be to talk about their feelings so you may need to contact them on his behalf and ask them to approach him - as long as this course of action would be acceptable to him.

Will be thinking of you.

Love Liz

[Whippit]

Just a note on contacting Student Services - they won't take the referral from a third party. You could, however contact his Personal Tutor even though he might kill you if he found out!

Let us know how you're getting as we're all concerned for you.

Love Annie

[daveenatilson]

well nearly a week later since we were given the awful news that they were stopping my mums treatment and still finding it hard to deal with, my mum seems to have accepted it and is trying to get on with life as best she can as shes still feeling the affects of her last chemo. myself though cannot accept the fact that they are not gonna try anything else and am still clinging on to some hope that when shes goes bk to hospital in 2 weeks they may offer her something else. i know they said its an aggresive and rare form of oc but surley there must be something else they can try! they removed the tumor and did a full hysterectomy and only a small ammount spread to her stomach lining just seems so unfair xx