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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

See all MNHQ comments on this thread

Original poster

To want to run away

689 replies

LostJennyWren · 15/12/2014 10:15

Today is my 25th birthday, likely the last birthday I will ever have. I have recently been diagnosed with a rare cancer, and the prognosis is not good. I have a two year old daughter. Every time I look at her my heart breaks. She will never remember me.
Anyway, all of my family and friends want me to enjoy my birthday. My DH wants us to do something special as a family and pretend everything is normal. But I can't. AIBU to just want to check myself into a hotel room alone and spend the day crying? I can't cope anymore. Nothing helps.

OP posts:
saffronwblue · 07/04/2015 22:28

I am so sorry you are feeling so alone. Try to take some moments where you just feel everyone's love wrapped around you.

QOD · 07/04/2015 22:42

I have a friend going thru rapid MND degeneration and she gets amazing support and counselling.

Do you have any contact with McMillan or anything where they offer similar?
You're never far from a good few of our thoughts you know. So never alone.
x

Cuteasa · 07/04/2015 23:22

I just wanted to say that I've been reading your posts and thinking of you. I hope you are able to enjoy the love and support of your family and the wonderful online community here.

I don't know if anyone's recommended it to you, but No Matter What is a beautiful book that may help your DS to understand that your love will always be there for him. My sister and BIL found it really helpful for the children in the family when their little cousin was diagnosed with cancer.

tulipbulbs · 12/04/2015 14:42

Hi Jenny, I'm sorry that you are feeling alone and scared and that it is spoiling your enjoyment of your time with your son. That time is still very precious for him.
I think it's really hard on you that you have had your hope taken away. My friend is a samaritan and she told me that there is hope for everyone and that we must never take anyones hope. Here we all are talking about your terminal illness as an accepted fact, but, you are alive and you love and you want to live. Can you find something to hope for? remission? more time? a new drug? an unexpected comeback? Medicine is a new and incomplete science and the world is full of possibilities.
Have you contacted a hospice? They are the experts in helping you to live your fullest life. They aren't just there for the end of life, they help you live as fully as possible now. They help people with long-term chronic conditions. They have people for you to talk to, massages, spa treatments etc. My children loved it when my mother-in-law was there (they were especially fond of the goodies in the communal fridge).

There's a book called "On death and dying" by Elisabeth Kubler-Ross, who is a doctor working in a hospice. She tells of the journeys of different people and how they worked through their fears and found peace.
I hope I'm not saying the wrong things.
Isn't being sad and afraid a sign of all that you have, your family, your togetherness, your beautiful man and boy?
Don't suffer without help, ask one of your family to ring the hospice; someone very normal and upbeat will visit you to tell you what they can do.
Take care, Jenny. Be good to yourself.

Original poster
LostJennyWren · 14/04/2015 10:26

Thanks tulipbulbs I have been avoiding any mention of hospices as it just feels like giving up and accepting that the end is near. Maybe I should look into it again. So far I have been resisting most outside help as it just feels like admitting I have lost and this really is going to happen. I guess I need to pull my head out of the sand. I will check out that book as I would love to be at peace with things. At the moment I am stuck in a selfish spiral of fear and anger and self-hatred. I can't stop thinking how things could have been if I had gone to the doctors sooner etc.

Thank you everyone who has been following this thread. It helps having a place to vent and people to listen. :)

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ChillySundays · 14/04/2015 23:00

My heart goes out to you Jenny and it is easy for us to suggest ideas when we are not in your position.

I don't mean to sound harsh but I do think you need to start involving outside agencies. They are experienced in dealing with these exact situations. They will have seen it all and understand exactly what you are going through and will be able to help you through.

Again harsh but you know the outcome so perhaps involving these agencies now is not just accepting the end but also accepting that you can change how you deal with this and make it easier for you and your family

As I have said in previous posts I am not good at putting thoughts into words so I hope I have not offended you and certainly don't mean 'snap out of it' attitude.

Love to you and the family

Interrobang · 15/04/2015 22:03

Hi, Jenny.

I haven't watched this yet, but a friend who beat cancer just posted it on Fb. She changed her diet and her tumour vanished. I doubt she had what you have, but still, worth anything, right!
www.ted.com/talks/william_li.

Original poster
LostJennyWren · 21/04/2015 00:54

No ChillySundays you are are right. I've been acting irrationally, silly really thinking avoiding certain things will mean I get more time

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LucyBabs · 21/04/2015 01:48

Jenny unless someone has been through it we don't have a feckn clue! I feel I may have health anxiety at the moment and its bloody awful. I'm mainly burying my head in the sand.

I can't imagine knowing I won't be around to see my DC grow up.

You do whatever feels right in the moment.

Lots of love to you xx

ChillySundays · 21/04/2015 07:55

Lucybabs I appreciate that none of us can know what it is like if we haven't gone through it and to be honest I expect I would be a wreck. We are not being judgmental about how Jenny is dealing with things but trying to help

LucyBabs · 21/04/2015 13:01

chilly I don't for one minute think anyone here has been judgemental in the least. Sorry if my post came across that way. Flowers

ChillySundays · 21/04/2015 13:08

Perhaps I am being too touchy today! Problem with the written word is that it is impossible to know what tone the writer has used so easy to misunderstand.

Lucy - perhaps you could start a thread in Health (and don't mean for a moment that you shouldn't have referred to it here). There might be some good advice/ideas in how to deal with the anxiety.

LucyBabs · 21/04/2015 13:10

No problem chilly It can be the same with text messages!

Yes I should start a thread, thanks for the suggestion Smile

CrapBag · 29/04/2015 22:43

Hi Jenny, I often think of you.

How are you doing? Flowers

Have you been able to do any of the suggestions for your DS for the future? X

Ohfourfoxache · 29/04/2015 23:27

Thinking of you too sweetheart xx

Original poster
LostJennyWren · 30/04/2015 09:13

Hello, thank you for the well wishes. On bad days I look at this thread and it makes me feel calmer. I am happier now the weather is nicer, sat outside in the garden everything just feels more hopeful. I keep bargaining with the universe for one more summer. I am feeling generally well, so I hope I get that and more.

Still afraid of death. Petrified really. It happens to everyone though and in a way I'm lucky with the life I got to live. I know some don't get as much time as I have had, it's all the luck of the draw.

Things are in place so my son will never doubt how much I love him. I opened him an email account and send photos and letters regularly. I hope he thinks of me as he grows.

OP posts:
formerbabe · 30/04/2015 09:20

Lovely to hear from you Jenny and so pleased to hear you are feeling well.

Keep enjoying the sun and your garden.

Lots of people on here thinking of you often Flowers

CrapBag · 30/04/2015 21:55

Hi Jenny, it's great to hear from you again.

That sounds positive. I'm glad you are enjoying the better weather. It's still quite cold where I am.

I have no doubt your son will think of you and he will really appreciate the efforts you have made. Flowers

Ohfourfoxache · 30/04/2015 22:04

Erm, Jenny - I know you're not going to believe this but you sound, well, bloody amazing Thanks

Seriously, look back at some of your posts. Look how far you've come. Look at everything you've achieved. Look at all the things you're putting in place for ds for the future - it's pretty awesome. You should be damned proud of yourself. I don't want to sound condescending or patronising, but I'm bloody proud of you - what an inspiration.

Agree with CrapBag, sounds brilliantly positive and ds is going to adore reading your letters and looking at your pictures xx

SunshineBossaNova · 01/05/2015 23:34

Hi Jenny

I agree with Ohfourfoxache. You may not think you're amazing but you are. You sound so much more positive than when you started this thread.

The emails sound like a great idea. Flowers I hope you have lots of cuddles with your DS.

beardeddragon174 · 05/05/2015 19:35

I am offering another hand to hold. It is deeply unfair. Xx

tulipbulbs · 06/05/2015 11:39

Hi Jenny, it must be very scary for you. I get frightened thinking "hell, there's only one way out of here", but, having been told what you were told, it must be beyond terror.
I'm glad that you are hoping to get this summer. This is your story and you are in charge of it, but, could you hope for another Christmas and kick all the dread and fear down the road, a bit? Loving Summer doesn't mean that 1 September is doomsday, it could just mean that a glorious summer is to be enjoyed?
I don't know if you have been offered any prescription drugs? I took a tranquilizer once for three months, following a tragic event. It was great, I suppose I can't say the name but it began with an X. I still felt very clear headed, but, it took the edge off. Maybe your doctor could give you something?
I know you are frightened. I've kept a vigil with 3 people close to me, who passed with cancer. The worst thing I saw was my mother's fear and dread when she was well. She was well for a long time but that fear ruined it for her. I wish that I could go back now with a big box of tranquillizers or another coping mechanism and help her manage it better.
The end for all three was so peaceful and gentle. It was a type of sinking into a sleep where you drift in and out but can still hear the people around you talking. My mother-in-law was chuckling at what we were saying.

Doctors have told you how it will be, but, this is your story, and to a degree you are in charge. You have courage and you can use that to push the boundaries, defy time and do it your way. Viva Jenny.

AlwaysWashing · 06/05/2015 12:03

Thinking of you brave Jenny, stay strong Flowers

ChillySundays · 06/05/2015 12:09

Hi Jenny

Thinking about you

Original poster
LostJennyWren · 06/05/2015 16:04

Tulipbulbs thank you, you made me cry with that message. Today is not a good day, sometimes the fear just holds on too tight and I can't shake it off. I don't want to take any tranquilizers, that must sound silly, I know that they help so many people, I guess I just don't want to live under the fug of drugs and not get to be clear headed for my son and our time together. Completely stupid as at the minute I am not clear headed and am under the fog of utter terror. I will talk to my GP.

The thing I fear the most is that I am not in charge. This disease is and it's stripping me away and I'm powerless to stop it. I'm being dragged kicking and screaming away from my son and husband. My husband is so young. I won't be his great or only love. That role will be taken over by another woman. It hurts even though I don't want him to be alone. My son will not remember me and soon it will be like I never existed. I hate it when those pessimistic thoughts win. Some days they do. Most days I enjoy the time I have and try and bargain with the universe for more. It's so tiring being so afraid.

Thank you all.

Hoping for a better day tomorrow. I'm going to wake up positive and work my arse off to stay positive. Today I didn't have the energy and it's gone a bit wrong.
I've always been one for living in the future, never the present. Really need to stop that now.

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