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DRAD3
Posts: 435
Joined: Wed Mar 16, 2011 11:22 am

Re: Finding it hard to cope

Postby DRAD3 » Tue Mar 19, 2013 7:24 pm

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
Posts: 88
Joined: Sat Nov 24, 2012 11:31 pm

Re: Finding it hard to cope

Postby Catherine » Wed Mar 20, 2013 11:31 pm

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
Posts: 299
Joined: Tue Aug 14, 2012 3:29 pm

Re: Finding it hard to cope

Postby PCUK Nurse Dianne » Thu Mar 21, 2013 3:51 pm

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
Posts: 14
Joined: Sat Oct 20, 2012 12:16 pm

Re: Finding it hard to cope

Postby elliecopter » Tue Mar 26, 2013 5:19 am

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
Posts: 435
Joined: Wed Mar 16, 2011 11:22 am

Re: Finding it hard to cope

Postby DRAD3 » Tue Mar 26, 2013 7:26 pm

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
Posts: 14
Joined: Sat Oct 20, 2012 12:16 pm

Re: Finding it hard to cope

Postby elliecopter » Tue Mar 26, 2013 10:10 pm

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!! :D

PCUK Nurse Dianne
Posts: 299
Joined: Tue Aug 14, 2012 3:29 pm

Re: Finding it hard to cope

Postby PCUK Nurse Dianne » Wed Mar 27, 2013 1:28 pm

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
Posts: 435
Joined: Wed Mar 16, 2011 11:22 am

Re: Finding it hard to cope

Postby DRAD3 » Wed Mar 27, 2013 7:18 pm

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
Posts: 88
Joined: Sat Nov 24, 2012 11:31 pm

Re: Finding it hard to cope

Postby Catherine » Thu Mar 28, 2013 7:49 pm

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
Posts: 178
Joined: Thu Mar 28, 2013 10:41 am

Re: Finding it hard to cope

Postby KATB » Thu Mar 28, 2013 9:17 pm

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

Kate
x

elliecopter
Posts: 14
Joined: Sat Oct 20, 2012 12:16 pm

Re: My mom

Postby elliecopter » Tue Jul 16, 2013 3:10 pm

Hello everyone!

Long time no post, so I hope everyone is doing alright and that things are going as well as they could be. The last few months have been very busy for me as I have now finished university. I actually have my graduation ceremony tomorrow!

I just wanted to give an update about my mom's situation and to ask a few questions. My mom, thankfully, is still doing alright. Following on from her last scan she has been continuing on Gemcitabine and had another scan in the first week of June. This where it gets pretty amazing - for the second time they could see nothing on the scan whatsoever, and her doctors were flabbergasted as they said they rarely deal with patients that have responded in such a positive way. There was talk of talking her off chemotherapy completely, but her oncologist wanted to do an MRI scan just to double check they weren't missing anything.

Sure enough, mom does still have a tumor on her liver. However, it is small and it hasn't moved anywhere else, so her doctors have begun to discuss options other than chemotherapy. They are hoping to do a procedure called RFA (Radiofrequency ablation) - does anyone have any experience with this kind of treatment? They are now saying they can effectively 'burn' the tumor away and that my mom will be tumor free by September if all goes well!! I know this does not mean she is cured or that it will never come back, but if it gives her a break off of the chemo I know that will make her happy. And obviously it is a completely different story to what we were told to expect when she was re-diagnosed in October!

She saw a consultant on Thursday in xx and he's told her she will be the first pancreatic cancer patient that he's ever performed this procedure on, (I think it's usually used for liver cancer?) so I just wanted to know if anyone else has any knowledge of it.

Sending lots of love to everyone,

Ellie

DRAD3
Posts: 435
Joined: Wed Mar 16, 2011 11:22 am

Re: My mom

Postby DRAD3 » Wed Jul 17, 2013 8:26 pm

Hi Ellie
First of all, congratulations on graduating - hope the ceremony went well today and that you have lots of photos as a treasured record of an amazing achievement. Considering what you have had to contend with this year, I hope you are (rightly) very proud of yourself!
More wonderful news for your Mum and this new procedure sounds so promising. I am assuming that a liver surgeon will have no problems undertaking this kind of surgery even if he is not a specialist in pancreatic cancer. I am Birmingham based and the team there are fantastic. I'm sure the support team will be able to give you some expert info about RFA. Do let us know how it goes and, as always, am sending you lots of love.
Deb
x

elliecopter
Posts: 14
Joined: Sat Oct 20, 2012 12:16 pm

Re: My mom

Postby elliecopter » Fri Dec 27, 2013 1:35 pm

Hello everyone, I hope everyone has had a good Christmas, considering everything.

I realise I haven't posted in a while, but I thought I would give an update on my mom. She really is, as her oncologist put it when he saw her a week or so ago, "a little miracle."

My mom had her RFA treatment in September, after a lovely two week break away in Greece in August. I now work in Birmingham, so it really is handy because I was able to visit her straight after work. The procedure was a success - as we found out in the scans she had two weeks after. It had, in effect, 'burned' away the tumour on her liver. Her oncologist didn't want to put her back on chemotherapy so he suggested to wait two months and then do a CT and MRI scan and then we'd go from there.

So mom had another scan result a week or so ago and the news is, remarkably: there is no cancer! None that can be seen on the scans, at any rate. Mom's oncologist was delighted, so much so that he said people like Mom were 'the reason he gets up in the mornings'. It's such amazing news that we can't quite believe it, it was the best Christmas present I could ever have asked for! She's been asked back for more scans in three months but she won't have any chemo in the meantime.

Mom's oncologist actually apologised to us and said he wished he knew what to do next, just because this very rarely happens. He said they were in pioneering territory and he wished he could be an expert in this situation! The team looking after my mom have been so amazing all the way through the years - mom's now been dealing with this for 4 years on and off. I cannot praise them enough for everything they've done. We had a wonderful Christmas Day, mom got quite emotional, as did we all, but it's all for good reasons for once.

I really hope everyone here has a happy and safe new year. I know I am extremely lucky to be in this situation right now, I only hope everyone else can have good news like this in the future.

PCUK Nurse Jeni
Posts: 1106
Joined: Mon Jun 14, 2010 1:30 pm

Re: My mom

Postby PCUK Nurse Jeni » Fri Dec 27, 2013 1:47 pm

Hi Ellie,

Such wonderful news and thank you so much for sharing it with everyone on here. Such a great story of hope and inspiration.

Congratulations to your mum, and long may she have "no cancer".

Jeni,

Support Team.

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: My mom

Postby J_T » Fri Dec 27, 2013 9:51 pm

Hi Ellie, fabulous news, really pleased for all your family.

So nice to hear the good news! Keep it coming :)

Julia x