MARS 2 TRIAL

Is anybody on here on the MARS 2 Trial that went into the computer and didn't get selected for surgery? 

Ahh, this makes more sense now.

I would say that I was unusually given the option of surgery outside of the MARS2 trial and clearly, few people get that choice. I have sent you a pm Kim and happy to talk about my experience. I must emphasise however, that I feel incredibly lucky and that, for me, it was the right choice. I know from personal experience that for some people it doesn’t all work out and the result has been tragic. However, surgery is a very logical choice but it must be weighed against a whole plethora of factors.

I have no medical training and so you must be guided by the advice of your CNS, Surgeon and Oncologist. I absolutely understand the searching for comparisons and the frustrations that seem to go hand in hand with mesothelioma. You are not alone but some tough choices you will have to make on your own.

Don’t know if this helps but a couple of phrases I sometimes use are:

Life is hard, then there is Mesothelioma 

and

I have Mesothelioma, the past is irrelevant 

Oh, a final note. It is ok to be angry, accept the anger and try to understand where it comes from. Then, you can use it by realising that some things you will never be able to change but, some things you can. For example, I accept that my condition is incurable and will take my life before it should. However, I get up each morning and say “yes, ok but not today, not today!”

Keith

Awww that made me cry you're very brave Keith, i wish you all the best xx

Oh, I don’t know if I should say thanks or sorry

It’s a weird situation to be in. I’ve known people who have lost loved ones to cancer and met one or two before it happened to me. Now, I have met loads of people affected by cancer and it is amazing how it hangs over us all like a shadow. However, so many people still have hope, still laugh and still love and find time to help others. This is inspiring and I am not good at any of it but, I can choose to enjoy what life I have left and try and help others in some small way, if I can.

Yes, the “not today” bit makes me cry a little to say or even write it. It is also a bit of anger and fight in me that helps me live on. I perhaps have a way of expressing myself in a way that is rarely seen from a man but I am not special in any way. I just try to express what I feel and sometimes I say things badly and upset others, though I don’t set out to do that. I expect nothing and I do feel humble at how kind all of you are. For this support, I say thank you x

Hi karen 

How did your husband get on with the operation i do hope all went well xxxxx kim

i'm also interested as my dad COULD get this op too. I hope all is ok :-)

Hi thanks for asking op went really well was about 5 hrs and mr Waller was very pleased with outcome my husband has been really well so much better than I had expected and also told better than anyone else at recovery on his ward with this op so over the moon. After op had 3 drains and 1 tube in nose and tube in neck but took kids (teenagers) into see him day after and looked so good had an epidural to control pain so no pain at all spent 1st day in icu then went to high dependency unit back on the ward on Thursday. Exchanged epidural for iv morphine which really knocked him out, had a bad night after iv came out to try and sort out oral painkillers but soon sorted them out now pain is under control. Was up and walking 2 days after op. Thursday physio took him out if ward and he managed 6 flights of stairs !!  Also has an exercise bike in his room Needless to say I am so pleased with his recovery. Hopefully he should be home by weekend still has an air leak, had two to begin with, but getting better everyday and they don’t seem to be too worried about it. Only one drain left in now. He was really breathless before op but is so much better already. Everyone is different but for us so far this has been such a god send and we are so grateful xx karen

Hi,

Very pleased for you. Your description is very similar to my own experience (detail in my profile). Your Dad has the right attitude and it makes a huge difference to recovery. Getting mobile is so important and the fact he did six flights of stairs so soon is excellent.

I can relate to so much that you have said and understand your excitement. Just keep an eye on him especially after a month as I suspect, he will start to feel much better and stronger but he won’t have fully recovered from the surgery by then. Don’t get me wrong though, it is good for him to push the boundaries. Just make sure he does it gently.

Congratulations and good luck for the future x

Keith

Hi Keith thanks for the reply so true what u said, this horrible disease is so unpredictable but we try to take one day as it comes it’s so hard to deal with and with husband being so young (51) seems so unreal don’t know how we all cope with it , but we do, today is a good day and that’s all we ask for hope ur doing ok karen x

Hi, My husband is 57 diagnosed May 17 inPerth WA 2017. He has had chemo and Immunology 4 rounds of 6 but pulled off as his Meso was progressing. It’s into his 6 th rib on his back covering his left lung ng and a few smaller tumours bottom of left lung. Just finished 12 sessions of radiation 2 weeks ago. With no change yet!