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Too Shy 16-06-2010 01:23 AM

This will probably be quite long, and I'll probably delete it anyway.

There's a reason they tell you not to look stuff up on the internet. It doesn't help. So many statistics.

Last week the doctors gave us 'sort of' good news (their words). The chemotherapy has shrunk my mum's tumour, which is good. But it's still next to the artery, so they can't remove it. They're going to try radiotherapy as well now, every day except Saturdays and Sundays, starting in July until 13th August. Then 3-4 weeks and then hopefully surgery, to remove it, so long as the radiotherapy works.

I looked it up, I just wanted to know what would happen in the surgery. And I keep finding stuff like:

'Several studies have shown that removing only part of the cancer does not help patients to live longer. Pancreatic cancer surgery is one of the most difficult operations a surgeon can do. It is also one of hardest for patients to undergo.'

'Among patients who have surgery with the intent of completely removing a cancer of the exocrine pancreas, the 5-year survival rate is about 20%.'

I don't know why I'm worrying so much. In March they said there was only a small chance, and it could be less than a year. Now they're hopefully going to remove (some/all, I don't know?) of the tumour in September. So it's good, right? Everything's good. So I'm overreacting, right? Everything will be fine.

It's quite lonely. I want a hug. I want to cry and I want someone to give me a hug and tell me it will all be ok. But it's not that simple, because I go to my mum for hugs, and I can't tell her I'm worrying because I don't want her to worry about me and get worse because of me. I'm 21, I should be able to cope with this like an adult. It is lonely though. I talk to my best friend a bit, but I try to make sure I sound positive. I've told one other friend at home, and one friend in my uni city, although nobody who actually goes to my uni. I feel bad talking about it because it's not a cheerful subject, it's not fair on other people, they don't want to talk about it, it's awkward, and I don't want to bring people down.

I don't even know what I want. Just some support or something? I'm just worrying tonight, I don't know why. Sorry.

Heartless 16-06-2010 08:42 AM

Anytime you need support, you're completely welcome to contact me. I was with my mom through the chemo and radiation, so I understand how frightening and isolating it is to be where you are. *hugs* I wish I could sit down with you and talk this all out in person. :( All I can do is say that coping with this is not a question of your maturity or emotional ability. Cancer is a crushing thing to have to deal with; it taxes even the strongest and most emotionally capable people until they can't bear it. It drains not only the person who's afflicted, but everyone around that person. After the time spent going through therapy and treatment with my mom as her main support, I'm only now starting to try and find the remains of what used to be my life, to see if there's even anything left of it.

What I'm trying to say is that cancer can't be coped with. It doesn't matter how strong, smart, or well-prepared you are, it grinds on you even if you're not the one who's actually afflicted. It's a kind of hell, and can't be negotiated with. There's absolutely no shame in needing support, or in coming here just to vent and get a hug. If nothing else, come and find me. I can't offer much but my support, but that I do offer. *hugs*

makedamnsure 16-06-2010 09:33 AM

Try and avoid the internet (well those type of pages anyway).
In my (very limited) experience doctors are generally very honest when it comes to talking with you about possible outcomes etc so ask them to clarify things with you rather than resorting to the internet.

And I can tell you now that I am 100% certain that they would not be trying surgery if they didn't believe it would have at least some chance of working so that has to be a good thing.

I can't imagine how difficult all this must be for you. Try as best you can to have time to yourself to relax and enjoy yourself, as well as trying to keep your mums spirits up.

Too Shy 16-06-2010 02:31 PM


I feel like I should be coping with it better. I'm coping ok, I'm kind of used to it all now, it's just since last week when we found out about the radiotherapy that I'm getting a bit down. For the last few weeks before that they'd been saying it was going really well, and they were considering skipping the rest of the chemotherapy and going straight to the surgery option, so I think maybe I just got my hopes up too much. It's still good obviously, the tumour's shrunk quite a lot, it's just they can't do surgery while it's next to the artery, so they can't remove it. Hopefully the radiotherapy will work though.

I guess it's true though, they wouldn't try surgery if they didn't think it would work, so that is very positive. They said there was only a 1 in 4 chance of her responding to the chemotherapy, and that seems to have worked well, so it's going in the right direction I guess.

I don't feel like I have any right to be sad though, because if it's all going well that's great, there's no reason to be sad, right? But I am sad and I am still scared. What if they remove it and it comes back? I don't know what the chances are of that happening.

It is true though, the internet doesn't help. I guess they just give the worst case scenarios. I might see if I can speak to the Macmillan nurses again sometime, they are nice.

Imperfect.Star 16-06-2010 02:47 PM

You heve every right to be feeling ANYTHING right now. Whatever the news about cancer it can be overwhelming and difficult to deal with, whether it's good or bad. Maybe it's because you start to get used to one state of affairs and then it's hard to deal with a change, even if it's a positive one?

I was sitting in on a breast cancer clinic a while ago (med student, just so that doesn't sound too strange) and there were several ladies who had had surgery and were being talked to about the follow up chemo/radio and how it will affect their survival chances. They all found it incredibly difficult to deal with even though they were doing well. One lady's daughter was there and she also started crying. You're not feeling anything unusual or shameful.

I wish there were better statistics to give you about pancreatic cancer. As things stand though you're right and just need to take the positives you have been given - the fact that they are treating your mum still is very good and people do defy the odds (I had dinner with a man who is about 15 years free when his 5 year survival rate odds were tiny).

Talking to the Macmillan nurses is probably a good idea. That's one of the things they are there for right? The emotional support that a family dealing with Cancer needs. Please don't feel like you shouldn't need support right now, this is a huge thing to be dealing with.

I hope things continue to look up and that you are able to be more positive.

Katiee 16-06-2010 03:24 PM

It's okay to want to cry, hun. As people say it's not good to look things up on the internet, you'll never know what you find. *hugs*
Try not to get worked up over it and try and focus on what the doctor says.
Hopefully it will all go well - I'm here if you want to talk. x

Too Shy 16-06-2010 05:36 PM

Thanks, muchly appreciated.

I'm feeling a little bit better now I think. The statistics for pancreatic cancer aren't good, but there's still that percentage who did get past 5 years, and my mum's young and seems to be responding well so far, so hopefully she'll be in that percentage.

It's sort of 'normal' now, that's what I'm struggling with at the moment, I think. I don't really know how to explain what I mean, it's sort of normal now but it's not normal, it's always there at the back of your mind and it doesn't go away. There's a part of me that feels guilty when I go out, like I've got training tonight, and part of me feels guilty when I go, 'cos I want to be here just in case anything happens in the future. And I don't know why because my mum still goes out, and she's fine (well, as fine as you can be), and I don't know, I'm just being silly I guess.

Thank-you for the replies, it really does help. And I will try and talk to the Macmillan nurses again if I can.

asparaguscabbage 16-06-2010 05:44 PM

You aren't being silly, you're a lot stronger and rational-thinking than many in similar situations would be.

I haven't got many words right now, but I'm thinking of you and if you ever want someone to talk to I'm here x

Talk to the Macmillan nurses, I'm guessing it would help you a lot to talk to someone who really understands

Take care x

Too Shy 29-06-2010 02:48 AM

I am worrying a lot tonight and I don't know why.

My mum seems a lot better than she did when she first started the chemotherapy. The chemotherapy IV part has finished now, and on 8th July (I think) the radiotherapy starts, every day except weekends until 13th August. They've said it will make her feel ill because it's going through her stomach etc. But that's a good thing, because it means it's working.

I think my mum's finding it quite difficult at the moment, she's worried about what will happen if it doesn't work, about leaving us. I don't think it will happen - there was only a 1 in 4 chance of any response to the chemo, and that's worked. The radiotherapy will pull the tumour away from the blood vessel, and then surgery. My mum saw one of my best friends in town earlier, and she said she cried when she was talking to her. I don't know if that's what's making me worry more tonight, or just tiredness. I'm trying to be the strong one at the moment, the positive one. My mum says she wishes she had my optimism and faith in the doctors. I'm trying to be especially positive when I'm with my friends, I feel bad mentioning any of this because I don't want to make them feel worse. So it worries me in case they realise how worried my mum is, talk to me, and then I might cry, if that makes sense. I don't cry in front of my friends.

I don't know. I am positive about the radiotherapy working. If it works, they might be able to do the surgery in September. Potentially the cancer could be gone by September or October.

So why am I so scared and why do I feel like crying right now?

asparaguscabbage 29-06-2010 08:55 AM

I don't really know what to say, but remember it is sounding quite positive now. Your mum is probably scared and worried, and to be honest, there won't be much you can do to take away that fear until this has passed.

Why don't you cry in front of your friends? Do you think it could help to be really open and emotional with people close to you? Keping your emotions to yourself won't help you Liv x

Always here if you need me x

Too Shy 29-06-2010 12:44 PM

I don't know why I don't cry in front of my friends, I never have really. I think my best friend's only seen me cry twice in the 12 years that I've known her. I kind of want to talk to them a bit, 'cos it's quite a lonely experience, but I feel like I'm making it sound worse than it is or something. I might try and open up a bit more when they next ask about what's going on though.

We just have to keep focusing on September I guess. It sounds like ages away, but it's only a few months really, and by October-ish everything should be back to normal again. So it's not that long really.

Thank-you for the reply, I really do appreciate it. x

Kame 29-06-2010 01:26 PM

I just wanted to let you know I'm thinking of you and your mum. I know how hard it is to go through something like this. My brother had a tumour in his brain last September but he responded really well to the radiotherapy. I guess I just wanted you to know that there's hope and not to give up. I'm sorry if I haven't helped.
Take care of yourself lovely,
Lanny xxx

Moonlight Princess 29-06-2010 01:35 PM

Hi Liv, I'm so sorry I haven't been around much lately darling but I have more free time now so if you ever need to talk or rant or vent then I'm right here for you and I'm sure that goes for everyone on this thread and everyone on this site as well. I know you feel like you have to be the positive one sometimes you can't carry this all by yourself sweetheart and that's normal and it's normal to have conflicting feelings and to have good days and bad days. Your mum isn't the only person to be affected by the illness, it's going to affect everyone around her but she's getting the best medical care, make sure you get the best emotional care to get you through this.
*sending you lots of love*

asparaguscabbage 29-06-2010 01:51 PM

You're not making it sound worse than it is; you are portraying your feelings to a situation, and although emotions are complex, we know that emotions are real and the truth. You can't change how you feel by simply wearing a mask, so to speak, that just hides the very real feelings beneath.

September isn't far away at all, it just sounds a long way off. Have you got things to do in the meantime? Maybe you could start a project and... I don't know... make a bag or dress or something, to give your mind a break.
Take care, we're all here for you. Please try to talk to your friend, she'd rather know the truth x

Too Shy 29-06-2010 07:29 PM

Thank-you for the support everyone, it means a lot.

Stegosaurus - thank-you, it's nice to hear that there is hope with things like this, usually you only hear about the worst things when you read stuff online. I hope your brother's ok now. x

Kiran - thank-you, I really appreciate that. It's kind of reassuring to know that it's ok to have bad days, at the moment I kind of feel like I don't deserve to complain when other people go through so much worse, if that makes sense. I'm still really positive that everything will be ok, it's just not always easy sometimes I guess.

Trustless - thank-you, that makes a lot of sense. :) The project idea sounds very good. I've got preparation to do for my final year uni project anyway, so that's a good start! But maybe something more fun too, 'cos I'm already starting to get stressed about next year at uni heh. But giving my mind a break will help definitely, because I'm fine until I start thinking too much.

asparaguscabbage 29-06-2010 07:42 PM

Liv, you have every right to complain, and have bad days (Although I wish you didn't have to suffer the bad days, but what I mean is that no one is expecting you to be fine all the time)

Try not to stress too much about uni, do what you need to do, but don't you think you deserve a nice, relaxing summer? Because you do :)

How are you feeling now?

Too Shy 29-06-2010 08:26 PM

Thank-you, I will try and convince myself to believe that. Hopefully it will be easier again once the radiotherapy starts, because they've said it won't be very nice, so I think I'm worrying about seeing my mum ill again. But it's good in the long term.

A nice relaxing summer sounds good. My kickboxing club have said use them as something to focus on if I need to think about something else. And hopefully there'll be other fun things to do this summer to just have some fun. And after 13th August my mum will start to feel better again, so that's good.

I'm feeling a bit better now I think. I'm kind of getting back into bad habits with eating and self-harm a bit again, 'cos I use it to avoid what's going on, but I feel better than last night. And I'm going to London with my family tomorrow, so I'm looking forward to that.

Moonlight Princess 30-06-2010 10:59 AM

I really hope you have a great time in London Liv :)
What are you planning to do?
As hard as it is hon try not to avoid what's going on. Unfortunately it's happening but you and your mum are doing so well at dealing with this and having bad days doesn't negate that. Your emotions are important so please try not to squish them down. When you feel like self-harming or restricting that's a clue that something deeper is going on in your mind and it's time to talk about it.
*love and cuddles*

Too Shy 30-06-2010 11:55 AM

We're going to have a skidpan day at Hendon tomorrow, so it should be good fun. :)

I will try and tell my friends a bit about what's going on occasionally. I'm kind of ok with telling them the facts, I just make sure to sound positive about it rather than telling them how scared I am. But I might try and tell them.

We got our exam results back today. So now I feel about 10 times worse. I haven't got any results yet, they're just going to send a letter explaining what to do next. I missed an exam in May, so I have to do it again in August if I get concessions granted. Hopefully the concession will be granted. But yeah.

Moonlight Princess 30-06-2010 12:36 PM

Liv I think I'm there with you you about the exams thing. I think I'm going to need to get extenuating circumstances granted when I get my results! EEK! Good on you for trying to be honest about your feelings. To be frank hon your friends probably know there is more going on with this than you're letting on and they'll be relieved to help.
PS What on earth is a skidpan day lol?

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