I hope this is a place for those who have not only had the primary Gullet (Oesophagus) cancer but also secondary cancer, wherever that may be. The emotions that flood ones mind and body are difficult to describe but support from others who experience this is invaluable and we need to prop each other up whenever necessary in order to carry on daily life.
When Ed was diagnosed on friday I think I was just in shock and now 3 days on I feeel numb as I try to find out when he will be seen, by whom, what can be done, can any thing be done, what to tell our sons and family, as well as bolster Eds hope and determination. LAST in line I, myself, want someone to hold me, reasure me, tell me not to worry as its going to be alright, but its not is it?
Only folk on here know what its like to be me. No one else I know can understand. We need to help each other HERE.
Hi Leisha, I’m so glad you set this up because as you so rightly say, we all need to prop each other up, and talking here is the best way to do it. This discussion should be of benefit to lots of people as this illness can be viewed from all its aspects, whether it’s primary or secondary cancer, whether from a patient’s, carer’s, relative’s or friend’s point of view and how it impacts and affects us all. Everyone is equally important in this journey because it touches us all.
My advice to you for now is to gather together a strong support team such as family, friends, people here and your doctors and nurses, and then start collecting as much information as you can about secondary pancreatic cancer. I’ll try to offer suggestions and advice where I can and I’m sure others will as well. But you know without doubt that we are here to help and support you. xx
I dont know if its because this is our second journey but I feel weird. I wept when we were told the cancer had returned but since then I seem to be in a trance going about the daily stuff and sorting out medication and appointments like its not happening. I dont seem to feel anything one way or the other. Anyone else helt like this or am I strange? leisha
Hi Leisha, It’s understandable and normal behaviour, so you’re not being strange. You’re kind of on autopilot for now, as you realise that there are practical things to be done and these are preferable activities to thinking too many unpleasant and anxious thoughts. I think your first priority is to get a specialist or Mac nurse onboard, and I’m so surprised that you haven’t been introduced to one yet. Hopefully this will happen when Ed starts his treatment. Also, have your list of questions ready for when you next see the doctor. And also, try to find out what Ed can eat reasonably comfortably. If that chicken broth worked, do it again. Or perhaps get some ensure fruit drinks etc. I did read with pancreatic cancer that plenty of fluids should be taken to avoid dehydration. Also, if Ed is able, then I think it’s so important to spend quality time together, doing the things that you like to do. I hope that you get some response from other people in similar circumstances, as I’m sure there are people on this forum with this cancer who can share their experiences with you.
I too find myself upon another journey with my mum’s recently diagnosed cancer and extremely short time span, so like you, physical tasks help me to keep focussed. I keep telling myself that I am strong because I am my mother’s daughter, and this is like a mantra that helps me. Today, after viewing the hospice, I’m going to take her old photo album to her, crammed full with millions of relatives and very happy times. Time marches, but we tread daintily don’t we? Catch you later. xx
Update on mum. We visited the hospice today and were shown around by the lovely staff there. We then went to the hospital and told mum how each room overlooked beautiful gardens. As usual, she was giving us instructions as to what we must do and how we must cope and what she would like. She’s an amazingly strong woman. My sister is flying from Miami next week so mum will have her immediate family close by.
I know your mum has been unwell, but this news has shocked me, I hope things can be made as comfortable as they can be for her, and that you are not too stressed with all the extra things you now have to worry about.
Dear Crystal - My heart goes out to you as you venture out on yet another journey. How nice that your sister will be arriving. At times like this you need family around you. The hospice sounds lovely with the garden views. And I am certain that the workers there are hand picked. They will care for your mom with tenderness, care and compassion. I will be thinking of all of you in my prayers,
I'm so sorry to hear about your mum, my thoughts are with you. She sounds an amazing lady, though of course we would expect that, as she gave us all such a wonderful daughter. YOu have been such a support to so many of us here, if I can repay that in any way right now, please please let me know. xxxxx
Leisha, my thoughts are also with you and Ed, xxxxx
Thank you all so much for your warm support, it felt lovely to read your words, like warm sunshine all around.
Hi Steve, yes it was a shock but not entirely unexpected. The docs have found that she has anaplastic thyroid cancer, which is untreatable. If you do a search the stats are very poor, no matter what the age. It’s a particularly aggressive, fast growing and metastasising cancer and that’s why it’s all happened so quickly. My energy is holding out at the moment, but I was totally exhausted last night and had to take painkillers for the body aches that accompany that kind of fatigue. I think you have that too don’t you? Thanks for your thoughts Steve. xx
Thanks for your lovely words, and yes you are so right about the nurses and workers there being hand picked. Every time I meet these kinds of purely dedicated people I realise how very special they are. It’s as though they have a shining light about them, have you ever noticed that? Every room at the hospice overlooks the most beautiful gardens crammed full of flowers, shrubs and trees and the colours were dazzling. Also, it will be great for my mum to see my sister. Roz came over this time last year, as she felt then that she wanted some quality time with mum, so hopefully that will be the case again. xx
Hi Liz What a lovely thing to say, it made me smile and your words gave me strength because that’s what supporting each other is all about isn’t it? You went through a terrible time yourself earlier this year, and that came as such a shock to many of us, so I’m so glad to see you here and hope you stick around, help where you can and have fun on the Sofa Lol. xx
I'm very sorry to hear about your mother having anaplastic thyroid cancer and I'm also sorry for not getting back to you earlier, the reason being that I'm hopeless at sympathizing with people. I have all the feelings but find it difficult to express them.You have been wonderful help to me in the past 6 months and I really feel for you in this time of sadness. I suppose there is not much you can do except be as attentive as possible to your mum and I know that you will be. The hospice sounds nice and it's good that your sister is coming over as well. The two of you will be a comfort and support for each other.
Well Crystal I'll go now but I'll be "speaking" to you later. Take care.
Love Ivan xx
Hi Ivan, thanks for your kind words and it’s always great to hear from you so don’t stay quiet just because you think you’re not too strong on the sympathy giving Lol. I’d much rather hear from old friends than receive sympathy, so keep posting when you feel like it.
Update on mum. It’s really a matter of a day at a time as the doctors have said that she has probably days or a week or so remaining. As so many of you all know with this illness, there are up days and down days, so sometimes she is very strong where we can look through old photo albums together, whilst at other times we just sit close by. This is really the first time I’ve had the opportunity to sit at my computer, mostly because when we get home from the hospice I feel drained, so invariably sleep. Thank you all for your thoughts and support and I hope to catch up with you individually when I can, so until then, I’m sending you all healing thoughts and love. Crystal xx
Thanks for letting me join the group. Leisha so sorry to read of your husbands news, I know what you mean about "getting on with things" its wierd how your body just takes over and goes through the motions for you. Hope things go as well for you both as possible. xxx
Crystal so sorry to read of your mums illness, how awful especially after all your family has been through already. Take care xxxxx
Liz - hi! not stalking you honest! hope you are well as can be chick xx
Thinking of you at this time Christal,I know its not easy but we are all here for you .
Hi Rose ,long time no speak how are things ?
afternoon Liz,how are you feeling today ?
And to everyone I hope the sun is shining for you !
Hi Rosie, You’re really welcome here and I hope you’ll join in whenever you want to. Thanks for your thoughts, and it helps to know that others are there through the difficult times. I think with your experience of looking after your mum you might be able to offer some advice to philsee who’s just joined us on the Carers and Caring discussion. Take care and I hope you have a lovely day. xx
Hi Johnnie, thanks for your words, it’s good to know that people are around who understand. I think you too might be able to reassure philsee and help him a little. I hope today is a really good day for you. Xx
Rose, hey, welcome home (ish) honey. As if you'd be stalking, I'm the one that's followed you and Paula around for about a year! Hope things are as good as can be with you and yours x
Jonnie, it's so lovely to see you posting,I hope you are fillling your days with good things x
Crystal, you're as busy as ever I see! I hope, in fact I order, that you're taking lots of care of you, and that things are as well as possibly can be with your mum. I think of you every day, even when I can't get on here x
Everyone, (can't keep all the posts in my brain, so sorry for not mentioning you all), I hope this group is helping the way the old threads helped me. If I can contribute I'd love to help. My profile explains more detail, and I'm conscious that obviously my story isn't a positive one in the end, but I am and always will be an advocate of this site and it's ability to provide information and support to those of us who truly need it and can't find it anywhere else.
Stepping off my soapbox now, have a wonderful weekend all,
Love Liz xxx
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