New user from uk
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Thanks guys, I think it’s helpful even just venting this a little, I really appreciate it. Think I better start a new thread in the right area of the forum and see what people say.
Thanks again
Adam
Hello again Adam
I too had a lot of pain post surgey and I found taking a strong sleeping tablet at night helped as my body could relax and concentrate on the healing process. The scar tissue still causes me pain and I have nothing like the mobility in my arms and legs as i had before. I have been told that this is probably due to nerve damage. I too would recommend you seek another opinion and also speak to your oncologist. Keep smiling and try to laugh every day. Take care xx
SandieAdam, I so agree with Gavin. PLEASE see another GP or your Oncoloigist, you should not have this kind of pain and it prevents your system from healing because you are using so much good energy to fight the pain.
Hi Adam,
No apologies are ever needed here for bleating on!! Neither are they ever needed for ranting, shouting, screaming or just having a good old moan of thats what soemone wants to do!! So if you want to have a good bleat then you go right ahead and do so!!!!!
My dad never had surgery of any type, so I can’t share any personal experiences or anything like that. But loads of members here have had surgeries and hopefully they will be able to offer some personal advice to you about this. Was it March that you had your surgery done? So it’s 6 months on now from then, so, maybe you could get in touch with the team at Kings as well who did your surgery and see what they think about your pain? I dunno really, but 6 months after the surgery I would have thought that your pain would have been easing off a lot? Hopefully others will have some thoughts on that as well.
I can understand your frustrations about being less active right now and wanting to get more active again. My dad was the same albeit not as active as you were, but it frustrated him as well when he wasn’t able to do as much as he used to. But don’t give up hope, keep on keeping on. Stay positive and think about that Brighton marathon in 2014!
Best wishes,
Gavin
Hi Gavin,
Yes I think it’s time to speak to a different gp or my onc team, I’m mostly surprised that 6 months after surgery I still have pain that I associate with the surgery, I feel like I’m ‘zipped up’ too tight plus my abdo muscles on my right side just don’t work and hurt a lot. I’ve dealt with pain before (I’ve had 2 fingers amputated in an industrial accident) but this just doesn’t seem to be getting better. As I said before, I was very active before this and I hate the way I am now, just hope it won’t stay this way as I’m desperate to get active again.
Lol, I’m bleating on now!! Sorry
Adam
Hi Adam,
Could you not go and see another GP at your practice? You say your GP is not great so maybe time to go see a different one. Or, could you not get in touch with your Onc or their team and tell him/her that the med your GP gave you isn’t working at al for you. There are a load of differnt types of meds that can be given for pain and if one type is not working then it is time to try another one. And that goes as well for a gp that is not working either!
Is this the med that you are on?
http://www.netdoctor.co.uk/depression/medicines/amitriptyline.html
Here’s a Macmillin link about Pain and there are loads of other bits of pain info in it as well. I hope that it is of use to you.
I hope that you can get some help with this, preferably as soon as possible.
Best wishes,
Gavin
Adam, may I ask you a question since I am not sure how your “Medical” works in the UK? Do you see an Oncologist and if so why can he not prescribe for pain you are having from CC?
Thanks Sandie, that’s really appreciated. I struggle every day with constant pain and restricted movement due to the surgery which gets me down a lot, I used to be a very active guy, running cycling and kayaking, this year I’ve only managed to cycle 6km and can’t yet run due to the pain, if anyone has any any experience of good pain management I would appreciate any tips, my gp is not great, gave me amiltryptiline (spelling??) but it made me feel strange so I’m back in pain and not taking them.
Adam
Hello Adam
My name is Sandie and I am here in the UK. Your story sounds extremely similar to mine and if you ever wish to speak to me please le me know. I too thought there wa no hope and had accepted my end, but I have now completed chemo and Radio and have since had 3 clear scans. I still have side effects from the chemo and sometimes have bad days, but every day I laugh and make sure I have something to look forward to, being positive is so helpful. Your wife sounds like an angel and you two will have wonderful times together. Take care xxAdam,
I just had my 1 year scan, everything clean! I only had a 1cm tumor on the bile duct, clean margins everywhere, so I was one of the lucky ones and feel blessed to be so. I also did adjuvant Gem/Cis for 3 months, and radiation for 5 weeks as well. No good data on whether or not it will help, but being 41 I said what the heck, didn’t want any regrets 5 years down the road. You’re in the same boat being a few years younger. Wish you the best, this site is a great wealth of information and support so keep visiting!!Thanks Pam, my prayers go out to you and your daughter Lauren. Despite my situation I feel lucky that I’ve got this far.
Adam x
Hi Adam,
I just wanted to welcome you to this site along with everyone else. I wish you and your wife all the best. Congratulations on being able to have a resection. That is a major hurdle. My daughter, Lauren is the one with cancer. She is only 26. I pray one day she will be able to have a resection as well. This site has the most helpful and wonderful people on it. I feel so lucky to have found it and I really don’t know what I would do without it. I hope you continue to post on here. You are among friends.
-Pam
Thanks everyone, this really is a great forum, it’s comforting to know that others have had similar experiences. I wish you all and your loved ones well.
The whole experience completely blind sided me and took me til just 2 weeks ago before I decided I am going to live, I had kind of resigned myself to death, ok, I still accept death, we all have to at some point for whatever reason but I now have plans that I’m praying God will let me see through.
Susie that sounds like a grueling chemo regime, I hate chemo and the way it affects me, did you suffer any cognitive impairment? I’ve had days after chemo when I couldn’t even hold a conversation, I hate that.
Lisa, yes my wife is an absolute angel, she has suffered as much if not more than me, I find this probably the hardest thing to deal with (closely followed tbh by the financial strains!!)Thanks again all
Adam
Hi Adam,
It’s nice to meet you and hear your story. I am very similar to you. I had intrahepatic CC, diagnosed in March 2011. I had a left hepatectomy with gall bladder removal. Clean margins and negative lymph nodes. I had 3 cycles of adjuvant gem/cis, 6 wks of chemo radiation with xeloda and 3 more cycles of gem/cis. This all finished in February. My next scan is in October. My last scan was in June and was clean. I am 32. I have some numbness around my incision, I was told this can be expected by my surgeon.
Keep us posted on how you are doing!Take care,
Susie
Hi Adam,
I am so happy that you could have surgery. I pray for a good next scan for you so that you can enjoy life with your new wife. I have had two resections and I still get that numb feeling on the incision line. Your wife must be an angel, it is a labor of love taking care of a cc patient after a resection. Nice to meet you, sorry it has to be here.
Lisa
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