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I’m so sorry to read your post. I lost my mum on New Year’s Eve, she was 59. I also spent the last two weeks telling her how much I love her and I hope she managed to conquer fear before she left. I was also so close to her and being single and not too close to the other members of my family I feel all alone – although I’m blessed with great friends.
I know there are no words to make you feel better but the most comforting thing I’ve heard is that it never actually gets any better, the pain might even get worse at points, but you do learn to live with it and you just have to accept it as part of your life.
Nine months after mum’s death, the numbing pain is almost gone and as I miss her more and more each day there are moments when the pain is so acute, it hurts. But at the same time I enjoy my friends’ company, I laugh and party and work, refusing to let grief take over my life.
Think of how happy and proud your mum would be to see you being strong and enjoying life.
My warmest hugs,
Dearest Diana, just read your post and felt the impulse to respond as I can empathise with your feelings so much…I went through this with my mum in the last two years. I also used to hate these cliches and could not even understand how people “battle” cancer – I used to think that you’re either healthy or not. One of the most difficult things to swallow those first few months was how that incredible pain that I felt was at the same time part of this banal discourse. But that for me was just a phase, after a bit you start focusing on other things and frustration increasingly becomes less frequent. This doesn’t necessarily mean that you feel much “better” but probably calmer – you will be astonished at how many things you can take up without “going nuts”. You summon powers you never knew you had – another banality shared by another carer but so true…I also can feel your worries about your husband getting sliced up and poisoned – I used to say exactly the same things. I think these feelings also subside after a while, as doctors and hospitals and drugs become part of your life.
I hope everything works out for you and your husband. Age is certainly on his side and since resection is a possibility, things sound optimistic for you. And keep coming back to this site, it has been of tremendous help for me…
All my positive thoughts to the both of you,
Roni, I am so sorry to hear about your mother becoming more fragile. I’ve been reading your posts, often identifying with your feelings. I think distance makes everything much worse. Having to talk on the phone and not being able to see your mum…It was much harder for me when I couldn’t see her (me living in London and her in Greece).
But when the time comes you do resume powers you thought you never had. I’d been told that and never believed it until I experienced it. Once I saw my mother and realised she was in her final days, I kind of forgot that I’m her daughter and tried to become her guardian angel instead, stopped crying and smiled more, cos I wanted her last impressions in this life to be of my smiling face.
Savour these “I love yous” – that made me cry, when I read about them – they will be such precious memories. And also, I know it’s hard, impossible even, but try to focus on the fact she’s still here and don’t think about what’s coming. I wish I were able to do that.
It’s great that you rejoined your temple. Church also helped my mum, I think. Unfortunately it doesn’t do it for me, so I’m contemplating therapy or counselling, or even group therapy, as I like talking to people with similar experiences.
You’re in my thoughts – I’ll be checking for your updates.
Boudreau, I am so sorry for your loss. I don’t believe anymore that everything happens for a reason, but there are people that manage to use this awful experience for something good. I am happy that you used it to deeply connect with your brother. And, yes, I know what you mean about this site, it has also helped me so much.
My love to all of you.
Shar, I also think you should ask the doctors. It might feel a scary thing to do, especially if you are worried about their answers, but it’s better to have an answer than not knowing. Also, do ask them about the fluid retention. No matter what it is, they might provide her with medication straight away in order to tackle the problem. Perhaps you could ask about that over the phone even rather than have to wait until the next appointment?
My warmest wishes to you and your mum. Keep us updated.
Thank you all so much for your wonderful messages, they really mean a lot of me.
Lainy, I was thinking of your description of Teddy’s passing on my mum’s last day and I felt less scared.
Pam, I was thinking of you and Lauren, while at the hospital. No one should have to go through this awful disease, let alone such a young person! But I do have a good feeling for you, guys, I really do!
Michelle, your message made me cry and cry. I felt like someone was describing my exact feelings. But it’s true, people that lost their mothers do tell me that the bad images fade away at some point, and you can remember you mum at her best. But they’ve also told me that you never really get over the trauma, that sometimes it will even get worse during the first years, but that in the end you learn to live with this pain and feel happy about other things again. A friend of mine who lost her mother to cancer when she was 18 uses a metaphor about seeing your mum die that I find pretty accurate: she says it feels like being a wild animal suddenly closed in a cage for life. As much as you scream and cry, you soon realise there’s nothing to be done, that’s it, your life has changed forever.
I try to see myself as my mother’s extension, as the most important thing she left behind, and therefore as someone who has to be a good and strong person, because this is what she deserves. I know this will not take the pain away but perhaps it will help me move on.
Extended hugs to all of you.
I am glad that we reached out to every doctor possible and did not take my mum’s first diagnosis of maximum 6 months for granted.
I am glad my mum had these amazing friends who pushed her to do things after she got sick and leave a legacy of paintings, tales, poems and songs for us to remember her by.
I am glad I had fun with my mum after her diagnosis, helping her to cope and creating amazing memories to cherish.
I would have pushed her to go to the doctor when I started realising she was losing weight and looking tired – rather than attribute it to her getting older.
I would have taken more photos and videos of her, even or more so in the last couple of years.
I would have spent my time after her diagnosis on the fact that my mum is alive rather than worry that she might die soon…
Adam, I am trully so sorry to hear about your story! Your mother was also so young, and three months is such a sort time to come to grips with the situation! The first months after my mum’s diagnosis I was numb with paiin and alcohol. I also know that it’s harder to give harsh news, so thank you for that.
I am, of course, aware that this might be the situtaion with my mum now. And no day has been normal, since I found out she has cancer, everyday of my life is an expression of love for her and an attempt to prove that I will be alright no matter what, so that she goes with peace when time comes. I hope you are also alright, even though everything is so recent for you.
As for false hope, the thing is that my mom was given no more than 10 days, when first diagnosed, then 6 months, then 3 months over the time she’s been sick and she has always managed to recover. Perhaps she does not this time. But perhaps she does.
Lainy, you are so amazing! I wish I could be as strong as you. Trying to support other people after what you’ve been through, it’s amazing…I’m always worried that if my mum passes away, I will become completely self-involved and indifferent to other people’s pain. Coming to these discussion boards and feeling the love and support running among all these people here makes me want to become better and stronger.
all my love,
Thank you, Cathy and Betsy, I hope you guys remain cancer free for ever and a source of inspiration for everyone else! Gavin, thank you for your advice. I will ask the doctor about all these.
The stent has extremely negative connotations for us, as my mum had an initial misdiagnosis as Stage 4 and had a metallic stent placed because of that. I suspect that the doctors used a much more archaic method than ERCP – it wasn’t through the mouth and it was extremely painful. The surgeon that decided to operate on her described the stent as “giving up”, as for him the case was oberable – and indeed it was.
I’ll keep your words in my mind and heart while dealing with this. I know doctors and the rest of my family think it’s lost cause but I do believe that this is not the end yet.
My warmest wishes to all the people on this forum!
Love the snowing background, by the way!
Lainy, I also don’t understand why they have to wait for a week – being so far away makes everything so much worse…
And yes, my mum’s constantly tired and sleepy and has no appetite. I know these are all signs of the endgame, but she also just had about 2 litres of fluid removed from her lungs and she currently has her ducts blocked, so I pray and hope that exhaustion is a result of all these…One thing I’ve learnt from the whole experience is how resilient the human body is…
I’m going home on Wednesday to be with her while she has her stent placed and hope that I will see her recovering after that…
Again, thank you all for sharing! Yesterday the prospect of a stent sounded so awful, today it sounds like a saviour!
My best wishes to all!
Thank you all for your responses. Lainy and Jim, your stories are indeed inspirational. I did also read Margaret’s posts that have given me hope. But the thing is that no one else does.
The update is that the doctors sent my mum home, cos they think that the current problem is not “mature enough” for a stent – I don’t understand what this means, really. She will go back in a week’s time to have a stent placed.
But I just talked to my mum’s best friend and she said that these are just ways to lessen her pain and we are just counting weeks. Her feet are also extremely swollen, which from other posts seems to be a symptom of the final stages.
I can’t help but thinking that this is the end – but then again my mum’s 59 and has been so strong until now that I am not ready to let go yet…
Thank you for your replies.
I was so sad to read that people that needed RFA had to face insurance issues on top of that. I hope insurance for RFA is sorted by now.
I was also surprised to read that it’s been painful for some people. From the online info I could get access to, RFA was described as mostly painless.
My best wishes to all. My mum’s still waiting for her appointment but I hope I will get back to you with happy news.
Oh, you are all so fantastic! Thank you so much for your quick replies!
Stupid me, I forgot to mention that when the doctor finally operated her, he removed the stent – which had already caused inflammation in the area. He was also really angry with the first doctors’ diagnosis.
I guess there is something to be said about Greece and its doctors, especially in the smaller city hospitals. In fact, when we were in search for a new doctor, I actually checked this website hoping that I could get some information about good doctors in Greece – if anyone else is looking, please, e-mail me! Our surgeon is an amazing person – and fantastic doctor.
So the blood tests have indicated that there is something wrong with my mum’s reconstructed bile duct. She is on antibiotics at the moment and will have a new scan pretty soon. She has not had any chemo for the last month, which is a bit worrying, but she is going back tomorrow and hopeflly she will manage to get one.
and, no, I don’t know what the coctail that has replaced Gem is. I haven’t been able to get hold of the onc but trying to convince my mother to ask him – but she somehow finds it scary to ask questions.
thanks again so much for the quick response!