My Dad – Update

Sorry I haven’t posted for ages but I have been thinking about you and your Dad. I am sorry to hear that he never got to start chemo but it is good that you are still going for second opinions. Even if he is not great at the moment the option of going to see someone else for a possible treatment might be enough to give him a bit of energy.
Although Mum is doing very well on chemo there are definitely days when she is iincredibly tired and has a morning and afternoon nap.
I know on the inside you must be finding it so hard, but being there for your Dad, and your Mum, must be very reassuring for them. It’s great that you are able to spend time together, and that your Dad is keeping busy and is still able to be active.
I am keeping my fingers crossed for you that something may come out of the second opinions.
Thinking of you
Jemima

Gavin, thank you for sharing your memories about your dad’s learning to ride a horse. It made my day.

Andrea – our fathers are SO similar! He seems to be at the same point as your Dad, and I want you know know I am going through the same things that you are, minus the second opinions. Dad has slowed a lot the last little while and though he isn’t saying so, I know he’s lost a lot of weight. Definitely under 130 lbs. now. He also refuses to have a nurse come to the house. He figures he’s still able to get up and around on his own so there’s no point in bothering them. They call weekly and that’s good enough for him at this point. I think he is having a bit more pain now at times, and sleeps quite a bit during the day. Dad has also taken care of his funeral arrangements and has made sure the “house” stuff is taken care of, or that Mom knows how to handle it.
It’s a tough time for us, as daughters…. my Dad is my hero and seeing him sick breaks my heart daily. I know, however, that he needs to know that when it’s his time, we are going to be able to accept it and realize how lucky we’ve been to have the time we HAVE had with him, considering when he was first diagnosed we believed it would be a lot less. This is what I’m working on right now… acceptance. Not an easy thing, but I’ll get there… I hope!

Gavin – I want to thank you for sharing all your insight about your Dad. I can say that it somehow helps to know that you are still here, doing well, and helping others that are going through the same things you did. You’ve really helped me immensely since Dad’s diagnosis in January – right from your very first post to me my first time here, welcoming me and telling me a bit of your own story. So, thank you!

Jen

Hi Andie,

Sorry to hear that you are having all this trouble with your dads scans and getting them seen by others. Lets hope that Prof Lodge can indeed get a password so that he can view them tomorrow, and hoping also that he will be able to help your dad here.

My dad also took naps, a lot of them and he would nap a few times each day, pretty much every day. He also sort of slowed down like you describe and he got round this by just taking it easier. Like when he would go to the shops in the morning for his rolls and the paper, he knew it was a bit more tiring for him so he would walk a bit slower and take it easier in general. He still did the things that he loved though like going to his day care centre twice a week and going horse riding once a week but again, he just took everything a bit slower. The horse riding was something that the Macmillan day care centre organised for my dad. I wanted to take dad on a hot air balloon for his birthday in 2009 but they wouldn’t take him because of his health and ho mentioned this at day care. So, they asked him what else he would like to do and he said that he had never been on a horse ever and then the next week they organised a surpirse visit to the local horse riding for the disabled centre for my dad. A Mac nurse took him there for the first week then I took him there every Monday for the next 20 weeks or so and he absolutely loved it! Of course the next time at day care, everyone started shouting Hi Ho Silver at my dad and calling him Tonto! As I said, dad totally loved learning to ride and the memories I have of taking dad there every week are so precious and will never ever be forgotten.

I can understand your dads reluctance to have a Mac nurse visit and I guess that this decision is so personal for each individual. All I can talk about is my dads experiences with them and he liked having the security of having his own specialist nurse come see him every few weeks and also knowing that she was there for him whenever he needed her. My dad could phone Shona at any time and she would come see him a few hours later. Even if there was no physical problem as such and my dad just wanted to talk, she would come see him and this reassured him. And it was also good for mum and I knowing that we could also call her regarding anything and she gave us a lot of face to face support throughtout this time.

I know that this is a tough time for you Andrea and I can still vividly remember this period with my dad. But you are doing everything that you can for your dad right now and know that we are all here for you. Taking it one day at a time sounds like a good idea right now.

My best wishes to you and your dad,

Gavin

Andie,
I am sorry the scans are causing so many problems getting a second opinion. I think that is pretty common though.

I too am looking at some getting some second opinions and wondering if
I will be strong enough if anything becomes available. I guess at this stage the mental toughness needs to be ramped up…at least in my case.

I can understand your Dad refusing Macmillan Nurses. It is probably an emotional thing where he might feel he is worse off if he needs their help. You might want to explain that having them their is not just for him, but for you as well and doesnt reflect where he is in the process, they are just there to help. I hope I am making sense.

Hang in there Andie.
Kris