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susikus
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I can see from the members section that there are new members joining every week, and most don't post. I just wanted to let you know how incredibly helpful I have found it to share with others who are going through the same things as we are. To feel that you are not alone and there is understanding 'out there' is wonderful. Thank you Paul, Jools, Deb and Laura and everyone else. I check this forum first and last thing every day - and sometimes inbetween too. So if you're thinking about posting, please do be brave and make that leap, we will welcome you and help you all we can. Thinking of you all, with love, Sue xxx

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I would agree totally with what Sue says. I am rushing up and down the north of the country trying to fit in work, family and visits to my wife who is,once more, in hospital as a result of this vile illness. However, I feel myself drawn to vent or ask for guidance or understanding from others on this forum whenever I get a spare moment. Believe me, it really does help. We all know what you are going through and are happy to offer advice where we can based on our own experiences so far. Your forum friends will also just listen and offer kind words which you can be sure are heartfelt because they are going through the same thing as you.

Paul

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What a lovely thought, Sue. I remember when I first found the forum and sat reading through the posts - crying with sadness that there were lots of other people suffering as my husband, Gary was, but also with relief that I had discovered I was not alone. I was unsure about posting my first message, because having read through the previous posts, there appeared to be a forum family already that I was not part of. I was unsure about stepping into the room in case there wouldn't be a chair for me or I would be ignored - it took me back to being the new girl at school. Truth is, if you are coming onto the forum, if only to read, you are already part of the forum family and someone will give up their chair for you, always take the time to listen to what you have to say and will try desperately to help if you ever want to ask for it. I owe a great deal to PCUK and to this forum. I could not have coped without you all and staying around to help others who are going through what I went through is my way of saying thank you. Love and strenght to all members old and new. I hope and pray for a day we do not need to be here because PC will be a thing of the past.

Deb

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evenin everyone. well nearly mornin! i echo sue, paul and debs comments, come on in the waters not too cold, bit choppy at times, but we learn and hopefully help others to ride the waves.

mt post is so late had a bit of a day up and down the hospital to my friend wendy, shes so frail, been told her lungs are swollen with cancer, on oxygen etc, so sad, also our chamelon "EARL" decided to go sick on us, so also taken hime to exotic pet shop, they think his kidneys have packed up but are keeping him for a day or so to see if they can help, peopke are so kind, one less thing for me to do, sorry im rambling again [ age ] love to everyone laura xxx

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Hi Laura - had been a little worried about you as hadn't heard much from you. So sorry to hear Wendy is so poorly and now your (exotic) pet. You certainly continue to have a lot on your plate - I do hope you are taking care of yourself and that you are OK. How is Brian getting along? Catch up with us when you can and we'll continue to think of you and send you lots of love.

Deb

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PCUK Nurse Dianne

Thank you all for your posts and thank you Sue for highlighting this in the first instance. That was very generous of you to 'reach out' as you all offer such a wonderful support to each other and have a great 'family network' that you all should be proud of. Deb thank you also, what you have said is absolutely true, I can imagine some 'family members' may feel like they are intruding in the first instance, however once you make that first step it is a lot easier.

I think in the first instance some people may be unsure of what they might say, as this can be a very personal space and also quite humbling. We just want to say that no-one is here to judge you, we are all here to help and support and welcome input from everyone.


Is there a way that you would like to offer new members an easier 'way into the room',ie maybe those who regularly post may like to extend the invitation when you may remember to ask if there are some new members out there who would like to join in? We are welcome to your ideas on this?


Also, you are always welcome to email or phone the support line if you feel unsure about any questions, or if you wish to speak to someone on a more personal 'one-to-one' basis.


Thanks, Dianne

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Hi Dianne

I can certainly understand that there may be many forum users who get a lot out of dipping in and out and reading other people's posts, without feeling the need to write, in the same way they would be quite happy sitting and listening to others talk if we were all sat face to face. Everyone is different and I do hope that those who read get as much out of it and gets lots of useful information as well as support. In the early days, I certainly did much more reading than contributing and, as a result, felt connected to lots of people who were in a similiar situation which was a great comfort. You are right, perhaps we need to regularly reach out to anyone who may be hesitantly wanted to post but are nervous or don't know what to say - not sure how we can do this without it becoming too formal, which can have the opposite effect. Are there any other members who perhaps have recently posted for the first time who can let us know what, if anything, put you off or what eventually made you go for it?

Deb

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Since I started this thread a week ago, we have eight more new members. There is a lot of reading here isn't there? I didn't post straight away. I think it is a good idea to read and absorb and find out what's what before you jump in. I was already familiar with forums but each one is slightly different. And many of us are reading this forum in a state of shock and upset, I know I was.


I think it is fine to just read. I would though like to encourage anyone who is on the verge of posting to do it. You will get so much back. Feeling like we're in this with others has been extraordinarily helpful to me. Our stories vary but we have so much in common. Hope to 'talk' to you soon.

Sue

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  • 5 months later...
Tinamackelden

Hi

I am a new member and after just reading what people have said decided to take the plunge.

I was diagnosed yesterday and I am on autopilot right now. I have been told I have a mass in the head and the tail and it has spread to the liver, so they are not doing surgery they are working out a Chemo schedule. Do not really understand what all this means, I am English but live in France and only speak a little french so to ask questions is incredibly difficult. I do not know whether this is classed as advanced or whether they do chemo and then see if surgery is an option, I really do not know any feedback would make me feel better and not so alone. All my family live in england except my husband who has been very ill he was on life support for 5 months and has physio every day so it is hard to talk to him as he just breaks down and cries. I hope he will get over taht as I need his support right now. Very confused has anyone had this same diagnosis :?:

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Hello and welcome to the forum. I am so sorry to hear of your diagnosis. This must be so frightening for you, especially as you are not clear about everything with the language barrier. I am not sure what services are available in France, but certainly here our NHS does help with interpreters - is this worth checking out? So important to understand what is going on - I wonder whether you can request things to be put in writing for you so that you can bring them home and take the time to translate them (I am sure the support team here would then help you make sense of what is said once it is translated). I can remember how hard it was to understand what was going on, when my husband was diagnosed - so much information, it was overwhelming and often seemed like a foreign language so I can understand how difficult it must be for you. I guess your husband is devastated and finding it hard to come to terms with it - being ill himself, he must worry about how helpful he can be but I am sure you will both find the strength to get through this together - I do hope so. You are not alone now - I know we cannot wave a magic wand (how I wish!) but we will always be here for you whenever you need us.

Sending you love and strength

Deb

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PCUK Nurse Dianne

Hi Tinamackelden,


Welcome to the forum. I am sorry to hear your story and your new diagnosis. No doubt you are feeling shell shocked at present. This must be an extremely difficult time for you for the many reasons you have explained with isolation from family and the language difficulties.


I will email you independantly of the forum with some questions you can ask and some other advice.


Kind regards,


Dianne

Support Team

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PCUK Nurse Dianne

To all new members,


For anyone involved with pancreatic cancer we appreciate this is such an overwhelming, difficult time. The forum is a great place where you can seek solace, comfort and advice from other forum members who may be enduring similar circumstances to yourself.


For any new comers to the forum the support line is also available to you and anyone seeking information. This service operates from 10 - 4pm on Monday to Friday. We offer a confidential service with as much information as you may wish to have and there is no limit to the amount of times you can contact us. Both Jeni and myself are specialist nurses and have an expansive contact base, so may be able to give you up to date information or help you access service provision. Email: support@pancreaticcancer.org.uk and phone 020 35357099.


Dianne & Jeni,

Support Team

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