My mom

[elliecopter]

Hi everyone,

I'm new to this forum but not new to PC. My mum was diagnosed with it in 2009, but thankfully it was operable and seemed to be successful. She was put onto a year of chemo just to keep it in check, and has had regular scans since then to monitor the situtation. I guess I was starting to think we were going to be one of the lucky ones that beat PC completely, but a few weeks ago, coming up to mum's regular scan, I started to worry. She wasn't unwell as far as I could tell, but I had a bad feeling and, sure enough, just after my 21st birthday she told my sister and I that the cancer had come back.

Now, I'm not sure of all the details, all I know is that it's on her liver, it's the same cancer and they cannot operate on it (it's stage 4). She's just started chemo again but my dad has said that it is very serious and will probably not end up being good news. Obviously, I've done some research on it myself since finding out again and the statistics, which terrified me when she had it the first time, are now making me fear the worst.

I'm in my final year at university and living away from home is now difficult. Mum has her chemo at home so I know she'll have friends around her even though I'm not there, but as I was still in school the last time she was ill, I could be there for her more, and now I can't I just feel so helpless. I'm trying to be normal and positive for my mum and in front of my friends, but I find that I can't really concentrate or really want to be sociable. I realise the chemo could help my mum fight PC for a long time but in the end, I know the chances of her recovering are slim. I'm only 21 and I'm so scared at the thought of losing her - I feel that there's so much I still need her help and support with and the idea that she may not be around in the future is almost too much to bear. My friends are supportive but I don't like talking to them about how I feel because I feel like I'm being a burden, and I know for some people cancer is hard to talk about.

I realise I have to be positive for my mum and I don't want to think of the worst case scenario all the time, but it's so difficult. I almost feel like there's a weight on my shoulders pressing down on me. It's like half of me wants to cry and scream and shout and the other half wants to carry on. I realise a lot of people here will feel exactly the same as me so I just wanted to vent my feelings a little in the hope it will make me feel a little better.

Edited July 16, 2013 by elliecopter

[DRAD3]

Hello and welcome to the forum - you can be very sure that you are now amongst people who understand how you feel and we will always be available to listen whenever you need us. My heart goes out to you - you are in the middle of an important time of your life and so young to be facing the possibility of losing your precious mum - you will understandably be terrified for her as well as worried. It must be so difficult to be so far away and have to keep your worries to yourself as well as try and concentrate on your studies. Is there a student welfare service at uni that you can perhaps make use of - a student counsellor or something similar? I think it will be very important that you have a good support system at uni. Counselling isn't for everyone and I didn't think it was for me but I had one session where I just cried and cried and got all my worries and fears out. The lady didn't say much or wave a magic wand but I did feel better after and that weight pressing down on me did feel a little lighter afterwards. I found the only way I could cope was to compartmentalise everything - when I was at work, I tried to concentrate of that and it did act as a healthy distraction. I had certain friends that I relied on to have a giggle when I needed a lift and others that were always there for me when I just needed to cry. The forum was really the only place where I knew people truly understood so I could talk about things relating to my husband's cancer and when I needed some specific information, I would email Jeni on the support team. What you are facing is absolutely enormous and must seem overwhelming - get your core support system in place - don't think that you will burden others - you will be surprised at how kind and supportive people can be and how much others want to help so don't be scared to ask. I so wish I could do more. I do hope that your mum's chemotherapy helps - do let us know as you find out more - it may be that things aren't as bleak as they seem and that chemo really will make a difference. Keep strong and positive and remember we are here for you any time.

lots of love

Deb

x

[susikus]

Oh, Elliecopter, this is sooo hard isn't it? I am sorry to hear about your lovely mum. You can vent here as much as you like - you're among friends who will understand. I'm old enough to be your mother (in fact my own daughters are 23 and 24) and I'm not sure I have any answers for you - we each have to find our own path. I know that my own daughters are relying on their friends to help them. One is married and lives a long way away, the other is moving in with her boyfriend this week. They come home and we talk very honestly and support each other. They are facing losing their dad - he was diagnosed with stage 4 pc in August and the deterioration is clearly visible since then. There will be a support system in place at uni - give it a go and see if you find it helpful. Give your friends a go too - try things out - see what works best for you. And go easy on yourself - this is tough for all of us. Welcome to the forum - a place no-one wants to be but are all glad to be, given where we find ourselves. Hugs and lots of love, Sue, xxx

PS are you an Ellie by any chance? I have an Elli.

[elliecopter]

Deb and Sue, thank you so much for taking the time to reply. It's a horrible situation but I'm really glad I've found this place.

I made an appointment to see a counsellor today, it's in the morning so I'll see how that goes. I hope it helps because I really want to be able to handle my emotions better. At the moment only my close friends at university know (as well as my personal tutor, who I saw today) because I don't think I can cope with repeating myself to everyone all the time because it does get exhausting. They have been amazing but I do feel bad as I know they're worrying about me. I have a hard time expressing my emotions sometimes because I feel like I'm just annoying people/making them feel awkward, but I have been trying.

It's strange because the first time mum got this, I was alright. I never cried or got emotional until the worst was over and the doctors said the operation/chemo has been successful. This time it's completely different. I can't seem to stop crying or get my mind off of things. My sister and I talk every day so that is also a help, but I hope speaking to a counsellor helps too.

I will let you know how mum gets on. I don't think we'll have any kind of prognosis until January, but she seems to be coping alright with the chemo so that is a good sign I guess. I'll be going home for a few days in a fortnight, so I'll be happy to spend some time with her.

And Sue - yes I am an Ellie

[susikus]

Good luck for today Ellie, I do hope you find the counsellor helpful. It's no wonder you're feeling different this time around because your mum's situation is different. And feeling like you're doing it all AGAIN is so hard too. Do you have any sisters and brothers to share this with? Although funnily enough I think that they are often not the best people to support you - your friends are. We are all here for you as well Ellie, you can 'talk' to us any time.

Lots of love

Sue

xxx

[DRAD3]

Hi Ellie

I hope the session with the counsellor helped. They will not be able to change anything unfortunately but having the space to cry, scream, vent, get all of your thoughts out of your head can feel very cathartic and will help I assure you. Use this space in the same way too. It is impossible to hold all that emotion in and carry on with your studies, you will soon become overwhelmed - so get them out. I know what you mean about being exhausted explaining things over and over to people around you. Perhaps you can ask a good and trusted friend to be your buffer there? They don't need to go into great detail, just say that you are going through a very difficult time as your mum is unwell and that their support would be really appreciated (whether that be regular hugs, a listening ear or everyone ignoring it and carrying on as usual - whatever YOU need).

I am glad to hear that the chemo is going OK. Try to focus on that and keep positive. That is not to say that you won't have times when you feel very down and hopeless, but go with the flow and allow those times to come (and go, because they will).

Lovely to hear that you are in regular contact with your sister and that you have a trip home to look forward to. Keep on going, Ellie.

lots of love

Deb

x

[elliecopter]

Hi everyone,

I know it's been a while since I last posted anything so I thought I'd post something now while life isn't so busy!

A lot of things have happened since October - my mum wasn't reacting well to the chemo they gave her - I think it was cisplatin with gemcitabine - she was supposed to have two weeks on chemo and then a week rest but never managed that, her white blood cells would get too low and they'd have to cancel the chemo. They then put her on to carboplatin with gemcitabine instead and she seemed to be able to cope with that better. However, just a week ago they diagnosed her with Type 2 diabetes, and since then her doctors think that most of problems she was experiencing on cisplatin were actually due to the diabetes and not the chemotherapy! Throughout all this she has been really well, considering everything. She's been tired, obviously, and she seems smaller and sometimes gets what she calls 'fuzzy headed' where she can't hear properly/can't remember things etc but that comes and goes.

The really good news is that she had her first big scan result on Tuesday night and the tumour on her liver has actually SHRUNK It went down from 3.6cm to 0.9cm, and we were not expecting that result at all, so as you can imagine, it's really good news for us. It gives us more time with her and dad is seriously considering planning a holiday now. They're keeping her on the carboplatin for 6 more weeks until another scan, just to see if that was the treatment that shrunk it or the cisplatin. I think they'll put her back on the cisplatin if they need to now as they think she can actually handle it after all. And from March there will be CyberKnife treatment available at the hospital she gets treatment at, so we're going to see if mum is eligable for that when it gets here; she has an appointment with her surgeon soon to discuss other treatment options.

So really good news, thankfully! And I've been going to counselling - it really has helped a lot. There's also a support group with a few other people who are going through the same thing, so I don't feel so alone while I'm at uni. There are still really hard days but thankfully since Tuesday we have something to celebrate for once! I'm trying not to get too optimistic as I know this disease can attack so fast and make my mom go downhill, but right now we've got more time with her so I am very happy about that.

-Ellie

[DRAD3]

Oh wow, Ellie, what fantastic news! I am grinning from ear to ear and feel so happy for you, your mum and your family - you can't imagine how stories like this give us all a massive lift and a real sense of hope. Thank you so much for sharing this with us and well done for seeking out support for yourself, as well as being there for your mum - you sound like an amazing young woman. Do keep us posted with how your mum gets on with the treatment options - here's to things continuing in this positive way and to your mum continuing to do well. Sending lots of love

Deb

x

[Morwenna]

Hi Ellie

It's so lovely to hear your mum is responding so well to her treatment, my dad is due to have his first chemotherapy session on Tuesday and i've been feeling quite nervous about it until i read your post so thankyou : )

Keep us posted on her progress

Morwenna x

[Catherine]

Ellie, that's really good news. Long may it continue x

[laura]

ellie, wonderful news for all of you, you must be over the moon, long may it continue.

love laura xxx

[PCUK Nurse Jeni]

Hi Ellie,

This is really excellent news, and thank you for posting it. As Debs says, it gives everyone involved in this disease a huge boost, and what a remarkable shrinkage??!!

Also great as the drugs she has been given would not always be given in PC, although I know a few hospitals are using cisplatin now, and it does seem to be having good effects, so great to know this.

Cisplatin and carboplatin come from the same group of drugs (platinum based drugs), so are similar, but we know that carboplatin is not as toxic on the blood count as cisplatin, and is generally handled better. The combo your mum is having is used a lot in Lung cancer, as well as other cancers. Hopefully, it will continue to work.

Best wishes to your mum for continued response to the drugs!

Kind regards,

Jeni.

[louiepc]

Hi Ellie

What fantastic news, it really is a huge boost to the family/friends and patients to hear some good news. Long may it last.

Love louie xxx

[luce873]

Dear Ellie,

What fab news about your mum's amazing shrinkage! Tremendous! So pleased for you and your family. Your mum must be a tough cookie.

Hope Uni is going well, final year isn't it? Good luck with the final push!

Virtual hug for you and your mum

Love Lucy xxxx

[elliecopter]

Hi everyone!

I wanted to just post to give an update and also to let a bit of emotion out. The past few weeks have been a little difficult for me.

Firstly a piece of happy news: my sister was married on Friday! It was a really lovely day but obviously quite emotional for many reasons. My mom looked amazing and she even got a standing ovation during the groom's speech! (She was embarrassed but she deserved it!) We all had a bit of a cry during the day/evening and at times it was quite hard for me. I don't want to say I was jealous of my sister because I was very happy for her, but the fact that she had mom at her wedding and I know I won't is pretty hard to take.

My mom hasn't had chemo for around 6 weeks now as she didn't want to feel too ill for the wedding, but obviously I'm a little worried that without treatment it will reverse the progress she's made. She has a scan on Thursday night with the results on Tuesday, so I assume the doctors will then decide what kind of treatment to put her on again depending on what the result is.

But really I'm a little bit down and worried despite the wedding and everything because I'm home from uni for Easter now, and it sounds bad, but when I'm not at home I can almost put everything out of my mind and focus on work/friends etc. Now I'm home I've noticed all the little ways in which my mom has changed since I last saw her a month ago: she's thinner, smaller, she's losing her hair quite rapidly now and her personality is changing (which I think will probably be her worrying herself and taking it out on us, which is understandable).

The worst part was that last weekend, I was home for a day for a family dinner, and when my dad was taking me back to uni I asked about mom because I wanted reassurance that she was ok, for the most part, despite what I'd noticed. My dad's never emotional but he was this time and told me we'd be lucky to have the rest of the year with her, and we never should have booked a holiday for August as there's no way we can go on it.

This is now weighing on my mind quite a lot, especially now I'm at home and can see what PC is doing to my mom on a daily basis. To have my dad, who is usually in control of everything and really looks after all of us, get really upset and tell me that has really shaken me. I'm trying to finish my dissertation at the moment and it gets difficult sometimes to concentrate because I just want to cry. It's like a bit of a wake up call: because I wasn't around mom all the time I hadn't noticed what was happening, and now I feel awful for not being around more, and even more awful for feeling like I want to go back to uni already to get away from it.

I know my problems are probably not as bad as other people's: my mom is still very active and sometimes it's hard to believe she is even ill! But I guess it's just dawning on me more and more what's going to happen in the long run, and it's very difficult to talk to anyone about it now that I'm home. I don't want to tell my mom, obviously, my dad doesn't like to talk about it and I don't want to burden my sister as she's just got married and deserves to think about happy things for a while.

I just thought I'd have a little bit of a vent on here, as I don't really know where else to go. I hope everyone else is doing ok and that Easter will be a happy time for everyone, as much as it can be.

[DRAD3]

Oh Ellie - do not apologise for feeling as you do. It is TOTALLY understandable and you will find many of us, me included, who have felt exactly how you feel. The fear of wanting to know, the devastation of knowing, the wanting to be with loved ones every minute of every day but at the same time wanting to run for the hills, to escape from what is an absolute nightmare, lets face it. I also understand your envy of your sister - having her wedding day with your mum included, wondering what the future holds for you. It simply is not fair and you are understandably very down and feeling alone. You are going through a difficult time and you know there is yet more ahead - it is credit to you that you are able to go to Uni, to get on with the work (as best you can), be with friends - it is good to be distracted and your Mum would not want you to put your life on hold. I can imagine it is almost impossible some days to concentrate on your dissertation. It's important to allow yourself the time to let out your sadness and your worries (here if it helps) - letting it out will hopefully allow some freeing up of space in your mind for your uni work. There is simply not enough room to hold everything in. I hope that sharing how you feel helped a little - I so wish we could do more. Take care Ellie, you know where we are. Love to you, your Mum and all your family.

Deb

x

[Catherine]

Ellie

I think all your feelings are totally understandable and reasonable. Happy times tinged with sadness, and thinking about the future without your mum. I'm not surprised you are finding it hard to write your dissertation, I found mine difficult without added pressure. I think its just a day by day thing. But your mum will be focussing on being at your graduation and seeing you off into your life. And whatever the future holds your mum will be there with you, in your heart and in your memories. So just take each day as it comes and enjoy the time you have with her. I've been spending loads of time with my mum and in some ways I'm grateful for this special time. In other ways I'd rather we didn't know of course and obviously I wish this bloody cancer never existed!!

Look after you

Lots of love Catherine xxx

[PCUK Nurse Dianne]

Hi Ellie,

All the highs and lows of recent days, it is such an emotional time. Having a wedding is an emotional time in any normal circumstance, so I am sure on your sister's occasion it was very emotional, however it was great that your mum was able to enjoy the day, and you will all have that time as a special memory. As for your Dad, he is probably trying to be strong around everyone, that 'man about the house' thing that men do, and by you asking him when he was away from everyone may have just caught him off guard. Also it is possible that your dad does not have the opportunity to say how he feels to others either. We often tend to think that men don't necessarily like to discuss feelings, so maybe you just struck a chord by mentioning those changes.

By being away you will notice the changes in your mum more so than those who see her everyday. This can sometimes be a shock, and also very difficult to deal with. I can certainly understand how you feel, by attemtping to block out any distraction whilst you are at Uni.

Don't be hard on yourself Ellie, being at Uni is difficult at any time, without all that you have going on at present. Have you spoken to one of your supervisors, or do you have a Pasoral support/carer at Uni that you could access. This might be helpful as they would be impartial and not directly involved, and also important for Uni to understand what pressure you are under.

These are difficult times, by all means use the forum and your 'forum family' to share your feelings, that is what they are all here for, take care of yourself and try to enjoy precious days with your mother.

Dianne

Support Team

[elliecopter]

Thank you Deb, Catherine and Dianne, your words have really helped me!

I feel a little less down today but posting at this early time because it's scan result day today and I can never really sleep. Over the weekend we had a lot of family over, which was lovely, but once I was alone with my boyfriend I just kind of broke down. I hadn't cried that much about the entire situation in a long time so it was almost nice to get that kind of release and my boyfriend was really amazing with all of it. I don't think I'll be fully focusing on anything else until after the result tonight, but I decided to go out to dinner with a friend tonight instead of waiting home alone for the phone call from mom, so hopefully that will keep my mind occupied.

It was lovely having some of the family round at the weekend (my mom has 6 siblings!) as our holiday in August will be with one of my mom's brothers and sisters, as well as their families. I think around 16 of us altogether including children, partners etc. My uncle was talking about tactics for our annual pool volleyball competition and it was really good to see my mom looking forward to something and being so positive. My graduation is the next big thing happening in July so that is the next thing my mom is determined to be around for, and then the holiday. I think if I just focus on getting towards key events it will be easier than thinking in the long term too much. I had this horrible thought when I was very down of, 'What if my mom doesn't see my 22nd birthday in October?' but I've put that aside now as I want to try and be more positive.

Dianne - yes, my dissertation tutor and personal tutor both know of the situation, and I receive counselling during term time (both one-to-one and with a group of about three of us who are going through similar situations). My tutors are very understanding, though I have rarely asked for extra time for work etc. Saying that, I have just been given an extra week (the maximum allowed) to finish my dissertation, so it's not due in now until May. I'm hoping to finish it well before that but the extra week has put my mind at rest as I'll have more time to go over things.

I'll obviously post again once we have the news. I'm not expecting it to be as amazing as January's shrinkage but I'm keeping my fingers crossed anyway!! Thank you again for being so supportive.

Ellie

[DRAD3]

Hi Ellie - you are doing exactly the right thing. Letting out all of your emotions when you need to, surrounding yourself with a good support system, making plans so you, your mum and all the family have something to focus on, to aim for and to look forward to. I know it's hard but keeping positive, despite everything, is so important.

Keeping absolutely EVERYTHING crossed for you all tonight. Do let us know.

lots of love

Deb

x

[elliecopter]

Well I said I'd post do here we go:

My mom is now classed as in remission!!!! I have no idea how it's happened or what this really means in terms of if it can be cured, but they can't find any trace of her tumour on scans anymore, apart from tiny pinpricks that haven't changed since her original diagnosis in October. She's going on three months of chemo with just gemcitabine, then another scan, then another round of chemo...and then I guess the doctor's will just take it from there.

I was literally jumping round the room with joy with tears down my face when I found out, and I was pretty much speechless when I phoned my boyfriend to tell him the good news. I never expected this kind of result; I'm almost walking on air. Considering all the statistics and what we were told to expect this is better than we ever could have imagined.

So I am a very happy girl tonight!!

[PCUK Nurse Dianne]

Oh Ellie,

That is such wonderful news. I can imagine you must all be in shock for all the 'good' reasons, and what fantastic news. Hopefully now you may all be able to look forward to making some plans, and you will be able to complete your dissertation and look forward to your graduation. That will be a special day for you and then a well deserved holiday after.

Enjoy the time ahead, and enjoy spending it with your mum. Sounds like your boyfriend is a great support, and I know you appreciate him. Great news for your mother, that is fabulous. Always nice to have some positive news on the forum to inspire others as well Ellie, so thanks for posting this and sharing, I am sure others are awaiting news on your behalf. Take care and well done to your mother too.

Kind regards,

Dianne

Support Team

[DRAD3]

Oh my word, miracles do really happen!! How absolutely wonderful. You must be feeling on top of the world, Ellie and rightly so. I am so happy for you, your mum and your family. As Dianne said, you can now plan ahead with confidence and really look forward to good times ahead. I assume the continued chemo is a belt and braces approach to it and that is good - let that mop up any tiny traces. I am sure you will all be celebrating and we will too. You good news will give so many people so much hope, Ellie - do keep us posted won't you?

lots of love

Deb

x

[Catherine]

Hello Ellie

I saw your post a couple of days ago and was so delighted for you. I didn't post back as we were waiting for my mums CT results and I didn't want to jinx them. It's amazing what superstitions you get!

Have a lovely Easter, good luck with your dissertation and look forward to your graduation and beyond. What wonderful news.

Lots of love

Catherine xxx

[KATB]

More good news - how wonderful! I'm so pleased for you Ellie!

Kate

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