hOW IS IT GOING?
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he came over to my house today and we were able to have a walk together on the beach this morning, it was lovely and sunny. He is not eating very well and is very tired all the time, also today he was very low, i think mainly because he was suffering from terrible nausea which really gets him down – however i think this is mainly due to the antibiotics that he is taking, i think he is also dreading the appointment tomorrow. I try to reassure him but i also want to be careful of not just dismissing his fears, i want him to feel that he can talk openly about how he is feelings however at the same time i really miss the person that he was, so strong and confident and i feel angry that that person has been taken away from me. I hope that one day that person will return. I checked out the Lance Armstrong foundation website – liverstrong which was a real comfort – so many inspirational stories.. however i don’t have to just look on these websites to find people who have beaten the big c – one of my closest friends is now clear of breast cancer after having a mastectomy 5 years ago, another one of my friends father suffered pancreatic cancer and is still going 2 years after being told that he had 6 months to live, he went into a clinical trial, the tumor shrank and he was able to have it removed surgically. I would never accept the opinion of one dr on the situation. i have been thinking of you and your husband, have you thought about getting a second opinion as to whether the tumor could be removed surgically? – my dad’s tumor had spread beyond his liver, stuck itself to his lung (destroying the diaphragm which had to be reconstructed), wrapped itself around the vena cava and adhered itself to his bowel and yet the surgeon was able to remove it. The surgery was tough, i am just hoping it was all worth it and it has not returned so soon.
jules
WE saw the doctors this week and we have been offered a place in 2 trials. One for photodynamic therapy and one a chemo trial. The PDT looks promising and since it is non-invasive we are definitely interested in this. I spoke to someone who works for the pharmaceutical co that manufactures the dye they use in PDT; he says that there are many centres in Europe that use this technique with colangio and it is effective in shrinking the tumour. In the US they use it less.
We are also looking into lifestyle issues though now my husband has much of his strength back, it is difficult not to fall back into old habits. He spends time talking to work and we are putting off things that wqe should be dealing with.
He is very calm and hopeful. He was four and half weeks in hospital and was very poorly. Naturally he is not keen to go back again. he has lost a lot of weight and several people have told us he will never regain it. I was recommended a high calorie drink that he has two times per day; cocnut milk plus almond milk with Whey protein and glucomine, which build muscle and I mix it with a banana. It is high energy and high protein which counteracts the muscle loss. He has gained a little weight and is eating normally.
We are going to have another scan to see what the current situation is. In the meantime we just take every day as it comes.
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