Urgent scan requested

Hello Needing Friends

I am not an expert but to bring you up to date I had a Whipples on the 3rd April tis year. At the follow up appointment on the 26th April I was told that without further treatment , chemotherapy , my prognosis was poor and although the further treatment will not cure the cancer it is hoped that my life expectancy will be extended but of course there are no guarantees.

obviously the chemo is not an attractive proposition but I have to give myself and Sharon my partner every chance so the decision to agree to chemo was a given. we have another appointment this Wednesday to make sure we know what we are doing and to sign a consent form and then I guess its all systems go.

its a man thing about not talking and keeping things to oneself but I have been amazed how reassuring it is to be open with friends and family and the clinical staff. my concern throughout this whole process has been will my life be better for the treatment. my whipples was a great success as far as it went but we knew deep down that all the cancer would not be removed by having that operation and it was inevitable that chemo would be offered and recommended as the way forward.

it is a difficult time but I hope that your husband can be persuaded that talking about this problem really does help. Cancer is no longer a taboo subject and I feel he will be pleasantly surprised that the support of those close to him really does boost your confidence.

as a final comment I had 3 scans of various kinds and the team at the hospital have said it is unlikely that a scan will show the whole picture. whipples was the only procedure that would show the extent of the cancer

hope this helps but if you want to talk further you know where I am

Thank you so much for taking the time to reply. Apparently the whipples he had last November was a success althiogh there was a certain area they would have liked to have taken more away from but couldn't. There were also 2 lymph nodes excised that were cancerous. They described the chemo as a belt and braces approach but he felt that it wasn't for  him even though in the heat of things I once told him he was signing his own death warrant. It was harsh but I felt all lasser comments had failed. He just said that he wanted to do things as he felt was right and it is only now that I feel he is faltering. Up until now the diagnosis has made him angry, he even felt angry that the whipples had robbed him of his appetite and taste. It hurts not being able to make things better and to see a strong man in turmoil. 

Hello again

I can sympathise with your husband. even before my operation my appetite and taste had disappeared. And for about 5/6 weeks after the whipples nothing had improved. the result was that overall I have lost about 20 kg in weight but that is one of the symptoms of pancreatic cancer , weight loss , fatigue and everything tastes awful. I am pleased to say that has improved and my appetite has recovered immeasurably. my oncologist is delighted that my weight loss has stopped and although I am not yet up to a 'fighting weight ' we have to remember that recovery is a very long process. one of the side effects is that I now have a sweet tooth which I haven't had since I was a teenager.

I went through a period when I was very down about the situation I found myself in , call it self blame for want of a better term. But it is important to consider that as patients we don't really know what is right for us. it may well be that chemo doesn't solve the problem but with help from others I decided to make the effort to lead as normal life as possible although a lack of physical strength means I cannot do all that I want.

I also understand your difficulties and Sharon I feel has been more affected by what's happening than me. I am not saying I am not unfeeling and not apprehensive about the future but we have been guided by our clinical team including the excellent support from the Macmillan nurses. it must be difficult for a strong man to be in such a vulnerable situation but I have been helped tremendously by having Sharon in my corner particularly in organising menus that keep me going. we have found more spicy meals have helped

I cannot offer any panacea for your understandable difficulties but your husband perhaps needs to share the burden with other people especially the clinicians. they have seen all this before and are well placed to give the two of you the support you need 

Hello Needingfriends

This is a difficult time for both your partner and yourself. I think if I have learned anything over the past four years when I first heard of pancreatic cancer it's that different people will make different decisions about the treatment they want. Also that some people do not want to speak about things. In general terms, my husband didn't want to talk although I did go to appointments with him. 

The other thing I would suggest is that if the scan does show something and they advise chemo then ask them what they hope to achieve with chemo. I don't think we really understood what the outcomes were likely to be.

Squeaky

Thank you Squeaky, it's reassuring to hear that there are others  who don't want to talk too much about things and also make the decisions they want to. I sometimes think that I have failed him in not persuading him to have the post op chemo. If I do get invited to his appointment post scan then I will ask what they hope to achieve and what the alternative would mean , would it mean more pain? His abdomen feels uncomfortable when he eats but he refuses at the moment to see gp or apesk to anyone about it. He want to wait and see what the scan, when it happens, shows. I do so value everyone's replies x

Hi Needing friends

I don't think you have failed your partner at all by not persuading him to have post op chemo. I think you have done the opposite and supported him in his decisions which is terrific.

Please do try to find out what the medics hope for if they do offer chemo. Quite frankly, I think that the chemo did absolutely nothing for my husband other than make him more tired and ill than he was. It's my view and I totally accept other people think differently that we now live in a society where every effort is made to offer some sort of treatment for illness and sometimes it doesn't do much good.

I think you are being a wonderful support to your partner in very difficult times and I have great admiration for you.

Squeaky

Thank, so thank you, thank you, for your support.. I want to ask him every 5 minutes how he feels, and I know he doesn't want me to. I feel responsible for his health and treatment. He doesn't smell the way he used to, the unique smell of a man at the base of his neck has gone,. Sounds silly but I miss it.. I want us to have a future, but scared I will be alone xx

Hi needing friends 

I think you are a wonderful support. It really isn’t easy watching someone you love going through this horrible disease. It’s such a shame that he won’t share everything with you but that’s just some people’s way of handling things. Maybe in time this might change. Much love to you xx

Thank you Kate, you and everyone on here really are so supportive. He ate a lot less yesterday and didn't feel so uncomfortable, though I am not sure his intake is enough. He still has some belly  but has lost a lot of muscle on his limbs despite walking the dog every day.. I am not sure what I want the health service to do, but I wish I felt more confident  in such things as diet, what to watch out for, what are  the red flags. However I think that partner really doesn't want to spend any more time in surgeries or hospital that absolutely necessary. Guess we will just wait for the scan and see what happens. Your love means a lot x

Hello Needing friends

Your most recent post brought back memories of the feelings I had about not knowing what was happening. Eating just became a mystery to me! Sometimes my husband would enjoy something but when presented with it a few days later didnt want it. He was a great coffee drinker but after the Whipple never drank coffee again.

As Kate and I have said you just have to go with the flow. It's tough, though.

Squeaky