Topic: Confused...

WEll, my last post was about my uncle having had his surgery. The surgery was very difficult but the surgeon accomplished what he intended even though it took 11 hours. I think the added complication was that the cancer had spread to his lymph nodes. After 3 weeks he is now back home. His billirubin level has been up and down, his last count was just above 200. The bile is draining in to the bag but wont be sure whether the level is decreasing until his next blood test. We are now realyl very worried about this as its that the consultant cannot do anymore evasive treatments to help this. He will be going back to Leeds for his follow up next Friday - my uncle's not looking forward to the journey as it is around 2 hours in the car and each time it really takes its toll on him. I'm not sure whether we should ask for hm to be referred back to Birmingham. The problem is that we trust Dr Raj Prasad - he's been briliant so far. Now if he's referred back who knows what kind of care he will get.In the mean time my uncle has been feeling very sick - and was vomiting yesterday. I hate to see him so utterly helpless. Like I said he's such an active person, and a hands-on dad.

We've also found an oncologist who speciallise in chinese herbs. Ive had a couple of chats on the phone with him and feel confident in letting him treat my uncle. He was recommended by a friend of a friend who also had cancer- Anyways this person John Hall from 'East meets West' has helped with with their quality of life and prolong peoples lives. He is one of four who practices in a way which ensures the eastern medicine is complimentary to the western medicine. He has a database of all the herbs he uses and their chemical reactions etc.  Again the distance will be difficult - he is based in Norwich which is a good 2+ hours away!! And he'll probably require to see my uncle at least every 2 weeks in the beginning. 

Its just so hard seeing him like this. Yesterday he didnt even wnt to talk  to any one on the hone as he just felt so sick and felt he didnt have the energy. Emotionally he has been very down, I just hope he's not loosing faith as I know its on a very difficult ride.

We're also not too sure about what to do with his diet. Before CC he was on glutenfree and dairy free diet as he has ulcerative collitus. This has been hard to sustain b/c of his loss of appetite. He is having freshly queezed carrott juice and other fresh juices. And is drinking his forti/nutri-juices. We just dont know what to give him as we dont wnat to further uset his stomach!

We just feel very confused.

Any advice is appreciated xx

Re: Confused...

ak,

I am glad to hear that your uncle is home.  My Dad had surgery in Leeds too, I just thought I would share our experiences:

After the surgery my Dad was very down and it took him along time to regain his strneght/appetite etc.  He also had some problems with wound healing and was attached to a 'vac pack' to help drain off the excess fluid.  It was a very hard time for my Dad, of course he was delighted to have been able to have had the surgery and to be tumor free however the recovery process was slow and he found this frustrating.  It is major surgery.  I think it took about 8 wks before my Dad started to feel alot better, gradually his strength came back, however he has never felt 100%.  Last Summer we were able to enjoy a family holiday in Cornwall and we have been able to share many happy times since, none of this would have happened had it not been for Prof Lodge who has been one of the few Drs on this journey who did not dismiss my Dad's case as hopeless.  What I am trying to say is that the recovery process is very slow and hard, I symapthise with you when you say that it is so hard to see someone you care so much for in so much physical and emotional pain.  Looking back the best way I think is to take it day by day, little steps, encourage him to move around as much as he feels able and eat little and often rather then large meals which seem daunting when you are feeling like this.  Gradually each day you will start to see small improvements, I hope.

As for the follow up appointments I always think that it is best to see the surgeon who did your operation, if the journey is really too unbearable then dr Prasad may be able to reccomend someone nearer.  as for diet, I would stick to light meals, organic good vegan food served little and often maybe supplemented with smoothies, the carrot juice sounds good, for calorie build-up my dad has pan toasted mixed seeds dressed with tamari or soy sauce (organic pine nuts,sesame seeds and pumpkin seeds) as reccomended by the Bristol Cancer Centre.

Hope this helps, very best wishes, Jules

Re: Confused...

Jules - thanks for getting back to me. Day by day is just what we need to do, i saw him later today and he seemed much better than yesterday. Its so nice to hear that your did feel better after 8 weeks or so, it does help listening to different experiences, if anything its encouraging. I will definitely take your advice -the carbs build up is good tip - do you serve it with anything?

I want to stick with Dr Prasad and hopefully by my uncles next appt he will be feeling better. Its just the billirubin level thats scaring us at the moment.

Im glad to her that youve been take your dad a way to Cornawall and just create some happy memories amongst this rollercoster ride.

Thanks - your advice ss definitely helpful. x