Colonoscopy today - shell shocked

Hello

Yes, it certainly is a roller coaster with the occasional high and quite a few lows. I know that feeling only too well. Yes, it can feel like a 'tornado', but there is always calm after the storm.

Your comment "I’m having to lie to my family so that I don’t worry them. The additional stress of being deceitful is taking its toll." trouble me. You are making life unnecessarily hard for yourself. Secrets and lies under these circumstances never work. Be honest and open about your condition to family, friends and anyone who asks. It will help you to unburden, as well as helping others to understand and appreciating your honesty. If later they find out, which they will, they will not think too much of you for keeping it to yourself.

I have been given a year and I am already over six months into my projected life span remaining. I have been honest and open throughout, just as I expect and deserve others to be open and honest to me. My family and friends have made my condition so much easier to deal with, simply because they understand and know that I am not putting on a brave face just for them. Most people can see right through such deceit anyway, and remain puzzled as to why they are being kept away from the truth. Think about this and unburden yourself, you will feel better by doing so.

Take care and all good wishes.

Hi Bazza

I hope you are well and are managing to do the things that you want to do. I do agree with your comments about the deceit being something that not much good will come from. I don’t plan on keeping my friends in the dark forever. My close family know about the liver cancer and are still coming to terms with it. Until I have a proper treatment plan in place I don’t see the point in causing them any further upset. I had to tell them over the phone as they are not local to me. They feel guilty enough about not being able to help me, so what good can come of it? I will tell them the full extent of my condition when I know what that is, and can make that announcement in person. Many thanks for your message.

Oh Jools63 so sorry I missed this .

If you ever need support just add a little @ in front of my user name and it sends me or anyone else you wish to connect with a notification .

A rough time for sure and I think you had a bit of concern over that area in your colon .

Its a hurdle clinically for sure and I hate that you have to face this . Take the time you need to strengthen then it’s back to the treatment plan . It’s difficult to face more treatment when you have been through so much and I hated it for my mum . But we are here for you every step of the way . And you will get a good plan in place once they know what they are facing .

Was it polyps that they found ? Did the dr suggest it looked concerning ?

Always here for you .

Court 

Hi Jools 63, I had treatment and was told it was gone, then had small liver met but when I went back for a year colonoscopy it had grown back on my bowel. Had surgery this time and chemo. I’ve had my colonoscopy brought forward so I’m going in 3 weeks time. It is a very scary time. I’m sending love and prayers too you and hugs. Xx

Thanks for your continued support it really means a lot to me. I had a call from my local hospital colorectal surgeon last night. They discussed me at yesterday’s MDT and decided that my liver resection should be the priority. The consensus on the colon was that they are sessile polys and are quite large. They don’t think they are necessarily cancerous! The person who performed my colonoscopy should not have said that they could be removed at another colonoscopy appointment. Apparently, these types of polys are very difficult to remove. I will have to undergo surgery in the next three-six months to remove either the polyps, or at least part of the colon. Having had a couple of days thinking they were definitely cancerous made me think what the worst case scenario could be. I discussed this with my surgeon, and we agreed that this would mean having a permanent stoma. A small price to pay for being alive. That’s for the future. For now I’m going to get on the current plan for liver resection. I’m meeting the anaesthetist and surgeon tomorrow. Is it wrong of me to be excited? Fingers crossed that then my surgery will still go ahead at the end of this month. Sending all of you lovely supporters and fellow patients lots of love and hope for the best outcome for us all. 

Thanks for your response Nelly1955. I’ll have everything crossed for you for your colonoscopy. I can’t believe your situation. The waiting really makes it all so much harder. It’s easy for people to say that we need to just get on with things while we’re waiting! I do find things that make me happy, and still have a sense of humour, but that takes a lot of energy. Wishing you lots of luck for a positive outcome. Keep in touch.

That sounds a bit more reassuring Jools63 and you are correct to deal with it one step at a time . Sounds a good plan .

I had a big guilt thing going on at my mum’s first liver resection . We were the most excited family taking her onto  the ward .  Everyone else seemed  distressed looking saying goodbye but we were so delighted she had made it to surgery .

However poor mum had to endure it all but she was pretty upbeat too . 

It’s a window of opportunity for sure. 

Hope your meeting goes well .

Court 

Hi Jools63, I also have everything crossed for you for your surgery. Sending love prayers and hugs xx

Hello again

I was delighted to read your good news this morning. I hope it all progresses well for you. You ask "is it wrong to be excited?" No, of course not, it is a very human reaction when under such pressure; the faintest glimpse of light lifts us. All I would say, is to 'live in hope, but have no expectations'. This view has seen me through some potentially dark days.

A few months ago, when I had the tumour removed, I was told that I would be considered for a liver resection at another hospital. After a few days, I was told that, in view of my condition, this would not be possible and a series of chemo infusions would begin to extend my life a little. In some ways, I was relieved, as I am not sure if I would have gone ahead with a liver resection if offered it anyway. I have a number of reasons to be cautious about entering into this surgery.

During the process that we go through, we are sometimes given false hope by well meaning people who may not have access to the full picture, only to be disappointed when another specialist tells us a very different story. Such is life, since people interpret data in many different ways. Some may not want to disappoint you, and desperately want to give you hope. 

During my own journey, I have always insisted upon being given the unvarnished facts, and I have always been left to make my own decisions, as well as getting second opinions when need from other hospitals/consultants.

Yes, be happy by all means, but temper it with caution. I do not usually do this, but you may wish to read an article that I wrote recently concerning my terminal illness, which has appeared in several publications. It may give some comfort; I hope that it does: http://barriemahoney.com/blog/

With all good wishes.

Hi Bazza

Thank you yet again for responding to my posts! I completely agree with you that it’s better to have a warts and all version of expectations than the best case scenario. Unlike you, at the moment I have the luxury of a bit more time to be able to let my family and friends know what my future may be. I am in awe of you bothering to consider other peoples situations given your diagnosis. I honestly hope that you are and continue to live your best life for as long as possible. My thoughts and prayers will be with you.