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elliecopter

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

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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

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  • 5 months later...

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.

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PCUK Nurse Jeni

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.

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Hi Ellie


Great news among all the sad tidings of the past few weeks. It's really good to have something positive we can take to heart for the New Year - all too few good news stories to inspire us. Best wishes to you and your "Miracle Mum"!


Love and Peace


Mike

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  • 9 months later...

Hi everyone,


I realise I haven't posted in a while. To be honest, things have been good and I kind of felt guilty, as so many people don't have good news when it comes to PC. But I was watching Stand up to Cancer tonight (away from home by myself) and got a little emotional so wanted somewhere to come and just...let it out, as it were.


My mom's been doing really well since last Xmas, we almost forgot she was ever ill. She stopped having chemo and her 3 month scans showed no signs of the tumour returning since the RFA treatment she had last September. My sister's became pregnant (due date end of December so possible Xmas Day baby!) and we went on a big family holiday in August.


However, over the past few weeks I felt a change in mom, but I couldn't explain what. She was still looking well, still going to Zumba class etc, but something felt off. She was having her next scan result the day before my birthday (my birthday and mom's scans never seem to go well, it seems!) and I was proven right. The cancer has returned, for a 3rd time, again on her liver. It's around 5.5cm big but hasn't spread anywhere else. The thing that worries me is that it grew that much in 12 weeks, last time it was caught on a scan it had grown that much in 12 months. Not sure if that is something to worry about.


So, I wasn't shocked as such, but disappointed. My mom has her usual brave outlook but she must be devastated that she can't get rid of this horrible thing haunting her life.


Initially, her doctors were going to put her on Abraxane + gemcitabine and then hopefully shrink the tumour down enough to do RFA again. But now they're actually saying, as mom had such a good history of "being good at cancer" as my friend once put it, they're actually considering operating! The doctors have said that she will be the first patient with matastatic pancreatic cancer that they will have performed this on, so a little apprehensive!


However obviously this is good news and not doom and gloom. She's meeting with the surgeon on Monday to discuss it all, and I suppose she'll have the op soon if it gets the green light. We're now turning my sister's baby shower into a Host for Hope event and I'm hoping to do some fundraising of my own.


PC has been in our lives for 5 years now and my mom has beaten the odds time and time again. I know she is strong and can keep fighting, but I don't know for how long. My worst fear at the moment is that this doesn't work, or it does and just keeps coming back. I know my mom will only be able to cope for so long before it gets too much, and there's so much of my life I need her to be a part of. I felt like this back when my sister was getting married last year, and I feel the same now she's having a baby. Mom will definitely see her first grandchild, but I don't know if she'll see me in a wedding dress, and that really hurts, even with the positive news right now.


I'm really trying to be positive, but there are times when I just freeze and am so scared about losing her. I hate that this disease seems to tease us with a promise of never returning, but ends up coming back anyway. Anyway, just needed to get some thoughts down out of my head. I wish everyone on here love and the best of luck with everything.

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Hi Ellie,

It's good to hear that you Mum has been doing so well, but I know this won't make the current set back any easier to bear. It's incredibly hard not knowing what the future holds. I have spent the last year and a half hoping that my husband will make it to the next birthday, anniversary etc. but not being able to think far ahead is tough.

It sounds like you mum has a really dynamic team, which is great. So combined with that, your mum's strength and your love it sounds like she has a good chance of getting past this latest hurdle.

Best wishes,

Nikki

Ps I was a Christmas Eve baby and have always thought it was a magical time to be born!

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  • 2 weeks later...

Nicki - thanks, Mum is fantastic and it really helps me be more positive as she's never let anything get her down, but obviously you can't help worrying. And I'm positive the baby will be born Xmas Eve/Day as my sister has a pechant for drama! We're all set to have Xmas at hers if needs be :)


Her surgery has been confirmed for this Sunday coming. They're going to remove half of her liver (amazingly, it will apparently grow back within 2-3 weeks?!) and they've said she'll probably have to stay in for 10 days. I'm going to make sure she has films and shows on her iPad to watch for when she goes in.


I actually booked tickets for her birthday to see Top Hat at our local theatre, they were for this Saturday. I booked back in Feb as a surprise and invited her sisters and friends etc. Thankfully, the theatre have been lovely and we're going to see it this Thursday instead. I had to tell Mum about it because we were rearranging but I'm happy she'll get to see it before she goes to hospital.


I think I'll have to find something to do on Sunday as the op will be a good few hours and all I'll be doing is biting my fingernails!

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Hi Ellie - have not posted for a while but have been uplifted by your mum's amazing story and hope that this is just the latest hiccup in the line and she will soldier on. I also hope you don't mind me putting in an amusing anecdote re your struggles with coming to terms with the likelihood that your sister gets to have your mum see her get married and see her child, but you may not. I have 5 children with a 13 year age gap and one day at my parents' dinner table, my youngest (then about 14) announced that it was not fair that when I die he will have had a mum for 13 years less than his eldest sibling. None of us had ever thought about that! I guess all you can do in all life's little and big 'unfairnesses' is cherish what you have this moment and focus on life today and not the fear of life's tomorrows. Hard I know, and something I struggle with every day, but the only way to live life the way it should be lived. I'll be thinking of you and your mum this weekend and also hope you enjoy the show Thursday.

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So mom is now in hospital. Op tomorrow morning. We spent over an hour at the hospital trying to fix the TV in her room as it was broken, as she was desperate to still watch Strictly, but we showed her how to watch it on her iPlayer so she was happier then. Funny that this was the most pressing issue on her mind!!


My dad will be going there tomorrow to be with her before/during/after, but I won't see her until Monday night now. I don't really know what I'll do with myself tomorrow. I think I'll just try to keep busy.


Didge - thanks, I hope my mom's story is uplifting. She is such a strong person and I just wish more people had her luck! And you're very right about cherishing the moment. My sister's 10 years older than me so we have a big gap, but I'm just going to focus on making my own memories with mom and not feeling sad about things that I may not get to share with her.


Oh yeah, and the show was amazing on Thursday - my mom was so so happy. I loved that I'd made her that happy.

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Thinking of you today, Ellie. Hope all goes well. And entirely understandable that your mum wanted to watch Strictly - it's the little 'normalities' of life that help us cope with the trauma!

x

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Thanks everyone, mom's op went well. The surgeon says he's really pleased - they only had to remove 30% of her liver (instead of 60%) but they did remove some of her diaphragm as well. We're waiting on the results on that - they are very intrigued about mom's cancer as they say it doesn't act like they expect PC to.


I saw her tonight, only got back an hour ago. She is in pain, understandably, but is back in her room and not in critical care. She's drowsy and feels a bit sick but looks a lot better than I thought she would - definitely a lot better than how she looked after she had her whipple operation.


The nurses have been lovely with her and she's just phoned to say good-night. I'm seeing her again tomorrow after work.


I'm very relieved right now, feeling a lot happier. I just hope that mom is able to recover and enjoy Christmas/a new baby without anything else coming along!


I hope everyone is well, sending all my love. I do feel so guilty posting sometimes...I know how lucky I am and I only wish everyone else could have the good news we have had. I hope one day everyone can.

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Ellie, really pleased for you and your mum and as others have said, don't feel guilty about good news, it's what keeps the rest of us going when it all feels a bit bleak. Fiona X

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  • 2 weeks later...

Thanks everyone for all your kind words!


Bit of a rushed post this morning as I am getting ready for work. Mom was discharged from hospital on Friday 7th November. She wasn't (still isn't) very mobile and is in a lot of pain, moreso it seems with her back (where the epidural was) than anything else. But she is recovering well.


She can be very emotional which I can understand completely and keeps crying and little things like adverts and looking at my sister's clothes for the new baby!


But she has developed a temperature since yesterday - she's been very tired, pale and says she's cold when she was right next to the fire. I'm assuming it's nothing to do with the operation as it was two weeks ago, but does anyone have any knowledge of how long you can get side effects from a liver operation? I'm hoping it's just a cold; my dad says he'll take her to the drs this afternoon if it hasn't gone down.


Sending my love to you all, hope everyone is as well as can be. Ellie xx

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