andie
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Hi Gavin,
I thought of you when the pictures of the snow in Scotland appeared on the news.
I keep checking the Met Office for Leeds, and so far no snow is forecast. We are due some in the night here in the West Midlands. It is certainly cold enough for it.
Yes we will see what Professor Lodge recommends, as the Cyberknife is so expensive and funding probably wouldn’t be a possibility. One day at a time.
Hope the snow doesn’t last too long.
Best wishes
Andre
Thanks Lainy,
This is another Doctor! I sent Dads CT scan to Professor Lodge, a surgeon and Dr Gaya, who deals with cyberknife. Both have replied within days of each other.
It has given Dad some hope, he has even started eating and enjoying his food again. We think he was close to giving up and depression was setting in.
We are going to Leeds Sunday night ready for our meeting with Professor Lodge, then we will see what happens from there.
Thinking of you and Teddy, and hope you and your family have a wonderful Thanksgiving xx
Hi Andreah,
Welcome to our cc family. I’ve been coming here since my Dad was diagnosed in April after 2 months of jaundice, and it really has helped me get through the past months, everyone is so kind.
One of the first things i was told was no one has an expiry date stamped on them, and that is so true. I told one doctor my Dad was not a statistic, and that they shouldn’t say months etc.
We were told Dad had 2 months in April as he was inoperable. 3 days later we were told by another hospital that chemo would be an option once they could sort out his bilirubin level. From April to September chemo got cancelled everytime due to stent problems arising everytime chemo was due. On september 27th after another stent was attempted, Dad was left with an external drain and told nothing else could be done, and chemo would never be possible. Time we could expect 3 – 4 months. 2 months down the line we have just recieved an email from another Doctor in Leeds who is willing to see Dad. It may lead to nothing but we have nothing to lose. Dad is in no pain, obviously he is weak due to the bile taking all his nutrition, he tires easy but is able to care for himself, so even though they thought hospice care would be needed by now, it hasn’t. So much for the 2 months he was given in April.
An amazing oncologist is worth his weight in gold. Your Mom sounds like she has an amazing attitude too, which is half the battle.
Here’s hoping your Mom is a miracle, I hope everyday my Dad becomes one too. And miracles do happen.
Take care of yourself and best wishes to your Mom too,
Andrea
Hi Kris,
That is wonderful news. Happy days are certainly here again:)
My best wishes as always
Andrea
Hi Julie,
May I join everyone in welcoming you to our cc family.
My Dad was diagnosed in April after 2 months of painless jaundice. The past months have been a rollercoaster ride, but with the help and kindness of the people on here I’ve managed to not have a complete meltdown.
My Dad was told his case was inoperable, and chemo was his option once the bile level was under control. Despite 3 stents and an external drain over the span of 6 months, we never got to chemo as the bilirubin wouldn’t go down. September 27th we were told nothing else could be done and Dad had 3-4 months left.
Yesterday I had an email to say a Professor in Leeds was willing to see Dad, as after looking at his CT scan from August he would maybe have considered surgery. We are going to see him Monday. Hopefully there will be no change on the new scan, as it hadn’t changed when they compared it to his first one in March.
Never give up hope, always ask questions, and trust your instinct. I was not willing for the hospital to give up on my Dad. He still felt well at the time apart from the jaundice, which suprised the doctors. He has gone down in the last month but he will not give in and wants to see what the Professor has got to say.
I wish you and your Mom lots of luck, never give up hope.
Andrea
JenniferS wrote:This should make you feel better about the weather – when I came to work this morning my thermometer read -28 celcius…. with the windchill (it gets so cold and windy that they actually CHANGE the temperature to factor it in), it’s -41 here today. I don’t think my feet will ever be warm again….OMG I would never survive that!! It’s not even a minus here and I’m freezing. I will never moan about our weather again!!
There is room at the hospital hotel for me, so we will staying in the hospital accomodation, the apartment looked so nice but Dad will be better actually being in the hospital, just incase it does snow!
Thanks Katie,
It will be a big shock weather wise!!! wishing you a safe journey back, hope you’ve got your winter warmers ready!
Andrea
Hi Jemima,
My Dad was happy to go down the chemo route, like your Mom, but as you know he never got there. Two hospitals said it was inoperable and Dad didn’t want surgery, having 3 major ops for bowel cancer over the past 9 years I think he’s had enough. Plus he didn’t want to travel to Leeds at the time. I had to respect his wishes. He has now changed his mind, I just hope it’s not too late.
Professor Lodge has been wonderful, after problems with the scans he even requested them himself, and he has always emailed me to keep me updated. He seems so kind. I just thought of your Mom when I recieved the email.
Katja, How to I go about the hospital accomadation? Do I need to ask the secretary about this. I have found a news article about the rooms at
Dear Margaret,
My thoughts are with you and Tom as always.
My Dad has had a few grouchy days of late, but only with my Mom. Dad too wants the house and garden done, and Mom has been doing odd jobs that she would never have attempted before. It has been causing arguments between them. Dad is frustrated he has to watch Mom do jobs that he once did, and now wants to do but is not able to do. He is really frustrated with it all. Perhaps Tom is too, and they say you always take it out on the one your closest too.
I feel torn between them as i can see both points of view. Dad at the moment has lost his appetite and Mom never knows what he is going to fancy to eat, she is run ragged up and down the road fetching things he fancies. When I’m not at work I help out as much as I can but it is taking it’s toll on her now.
My son is 9 and as much as he loves visiting his Nan and Grandad I would never ask them to take him overnight. We visit every weekend but both me and my husband are there too. If he doesn’t want to go shopping with us then they have him for 2 hours max but he knows if Grandad wants to rest he must let him. Mom likes having him there as he makes them laugh and takes their minds off things. He helps with little jobs and really looks after my Dad.
I hope Toms mood improves soon.
Sending hugs
Andrea
Thank you all.
I have calmed down now and digested the news. Dad wants to go and we have nothing to lose by going. The prognosis can’t get any worse. It has been an emotional few hours discussing it but we are now planning our little trip.
I have got to phone Professor Lodges secretary tomorrow and then I can arrange an hotel etc. It’s a 3 hour journey so we think staying over the night before will make it easier on Dad.
Jemima, did you contact Professor Lodge? only our parents seem to have similar size and locations of tumours.
Will let you know more details when we get them.
Hi Julia,
Thank you for sharing your day with us, and thank you for bringing CC to their attention.
We are so proud of you.
hugs
Andrea
Hi Julia,
Thinking of you during this little ‘set back’ but with yours and your sisters fighting spirit I’m sure toxic boyfriend will be kicked into touch!
Just wondering like Gavin said, does your sisters stent need cleaning out, due to the itchiness? also there was supposed to be a new ABC03 trial starting in November, would your sister qualify for this, as it’s been over 6 months since she had her original chemo, just a thought.
Sending big hugs your way
Andrea x
daddylove wrote:Found out today that he is still a candidate for whipple after putting it off for 6 months! I’m exited and scared at the same time.That’s wonderful news? What changed your Dads mind?
Wishing you all the best
Andrea
Hi Jemima,
I’m so glad you’ve finally got some answers, and positive ones too. The fact that it’s a cyst is great news but they really shouldn’t have put you through the last few days thinking it was pancreas cancer/primary.
We were told that having chemo we would be looking at keeping the tumor the same size, a reduction would be a bonus. So the chemo is doing the job, which is fantastic news.
I suppose your Moms tumor being so small it is hard to see on CT scans but it’s still frustrating.
I hope you Moms WBC manages to return to normal ready for her next chemo. I’m sure the 2 weeks rest will do her good though and enable her to get back on her feet.
Thinking of you
hugs
Andrea
