Just joined the group wanted to say hello
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Hi Kris and John… Yes It was Gavin from Scotland-Dundee. Last post I remember is father tryied going out in the sunlight with his gloves off and started to get red skin, so they were diappointed that he had to wait longer before going outside. If you Google” Gavin” above and click in one of his entries there is an e-mail link through Cholangiocarcinoma if you would like to try contacting. It looks like Octber ist was last entry. Or type in Gavin in the search forum and open one of his post.
Jeff
P.S. Sorrry Gavin’s e-mail was there a couple hours ago. It must have been removed for privacy reasons. I surely hope all is well with his father.
JeffKris and John
The posts were from Gavin and it was his father who was having the treatment. Haven’t seen any posts from him for a while.
Ron
Hi and welcome John, I think everyone said it all. I was Stationed at Raf Lakenheath for for years. Have stopped in Mildenhall many times. Nice little pub on the right not far from the roundabout coming from Lakenheath. Also a Bed and Breakfast on the right across from air terminal. Can’t remember names. Probally to many pints of Dark Brown. Wish you all the best mate in battling this disease. Positive mind and lots of hope.
Cheers!
JeffJohn,
I cant remember the name of the poster, but someone is Scotland (help me Ron) had light therapy and it seemed to be working. Perhaps you could get a second opinion and try that treatment.Again, welcome to cholangiocarcinoma central…home of all things cc related.
Sorry you had to be here, but we are really a great group-dull of support and information.Kris
John
The insurance company should only be interested if you are able to do the same or very similar work compared with prior to your illness. Assuming you cannot then they should accept your claim. You may have to have a quiet word with your GP and oncologist so that they are aware of your own wishes and what is at stake financially.
Good luck
Ron
Thanks Ron
WE must have been on a different tack – will check with my pension companies — although one said that as I am still able to do somesort of work ( heaven knows what ) I am not eligible for medical erm retirement . They take your money but dont want to give it back typical of insurance companies I’ve found – dont have much to do with them if I can avoid them.cheers
JohnHi John
Good to see that you are in good spirits. I have the same problem with my platelets and generally now have 2 on and 1 off for my chemo.
Just in case there is some confusion, it is not the Inland Revenue you would ask about the pension funds it is your own insurance company. This assumes that you have made your own private pension arrangements.
Same for the life assurance payouts.All the best
Ron
Hey John! My huband Lee was diagnosed with this monster in February as well…he was told by some very, very, important Dr.’s at Mayo Clinic Rochester, that there was absolutely nothing they could do for him, the cancer spread to his liver, go home and prepare to not be here within the next month or two. That was in April. Today is November 6, he is still with us, the cancer did not spread into his liver, he is undergoing Gemzar and his tumor is shrinking as well. So, with all of that said, don’t lose hope, know that the only one who can say when your last day is Jesus Christ our Lord, and know that lots of prayers, smiles and hugs are coming right your way!
Heather
Hi Ron and Hi to you too Lainy
Thanks for the info Ron, I do get IB and high rate DLA and have just got a new car through the motability scheme, its now 3 weeks old lol. Thought I might as well have something from the State for as long as I have got Fortunately I have not lost my sense of humour – long may it remain so !!!!
I must look into the Inland Revenue part haven’t done so upto now. DPW didnt mention that at all. Get that under way asap.
Treatment seems to be going along fairly nicely but I have been dropped to a fortnightly cycle for chemo instead of 4 weekly because my platlet count drops to far for the last chemo. Another sCT scan wiwthin the next fortnight so will have to see how we go from there.
Nice to meet you all and thanks for the information.John
Hi Jonuk. Like everyone else I would like to welcome you but at the same time say I’m sorry that you have to be here. I see you are having the same treatment as me and that you seem to be handling it fine. So I will not write about that but rather information I have discovered that may help with the financial side. There are 2 social security benefits you should be entitled to. Assuming you are no longer working you will be entitled to Incapacity Benefit. There are 3 levels of IB –
Hi John and welcome to the best little club in the world that no one wants to join! It sounds like you are doing amazingly well. You will find this a great board where you can laugh, cry or vent! We have all done it all. Please keep us posted on you and know you have found the most caring people in the world.
Lisa: we are all so looking forward to a report on your dinner and it just goes to show how much we would all like to meet!!!
John, Welcome to the club. You will find a lot of help & support here. As others have said, every situation seems to be unique & you seem to be doing well which is promising. Try to keep a postive attitude. Stay strong. Everyone here is here to help & support each other. I am sorry for the situation that brought you here, but glad that you have found the best place to be to help you to deal with it! The best of wishes coming your way.
Darla
Marion, thank you also for your welcome to the group. I was told at my original diagnosis that the cancer is inoperable so it was palliative care for me only. The chemo seems to be doing its work at the moment will have to wait to see what happens in the coming months. The fact is I feel so well really only the extreme fatigue and breathlessness taking its toll – no nausea etc.
Thanks for your good wishes and mine to you too.
JohnHi John…so glad to meet you. The one thing most of us have learned is that no one is able to predict (with certainty) the life expectancy of someone being touched by CC. You are 9 months and are still feeling o.k. which to me sounds very promising. And the fact that you have responded favorably to Gemcitabine is another reason to feel hopeful about your battle with this cancer. We have people on this board who are with us way beyond the predictions of their physicians so, why not you? Has a resection been ruled out? Also, have you had the inclination of contacting other physicians familiar with this disease? I am a strong believer in 2nd and 3rd opinions especially, when dealing with a cancer such as Cholangiocarcinoma. Most of all I am happy that you have reached out to this special community where members are welcoming and graciously share their experiences and knowledge in a most selfless way. Again, happy that you have joined us where none of us wish to be and yet, where none of us would rather be when CC becomes part of our life.
Tons of good wishes coming your way.
MarionHey Lisa thanks for the reply very glad to hear you are well now. I have no idea how large or small my tumour is – perhaps there are certain questions I still need to ask my doctors. Like you say the fatigue is the worst thing I feel I am suffering at the moment – perpetually tired but sleep doesn’t come easily sometimes.
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