September 12, 2006 at 8:03 am #14293
I have not visited this site for about 6 weeks.
My Mum was diagnosed with CC in April this year. She lives in Greece, and was treated at Patras University Hospital in Rion. She was in hospital for 6 weeks in all. The first couple of weeks after the resection were the most difficult for her in terms of difficulties. But after that her recovery was amazing. I was due to return to UK at the end of June, but managed to stay on in Greece to be with her.
She was released from hospital 15th July. She was really getting fed up of being in hospital. But there was an internal bile leak, which is why she was in so long. But we talked the doctors into a temporary compromise. So she left hospital with 2 coloplast bags attached to her side, where the drains came out. We enjoyed a lovely 8 days together back in Kefallonia. I returned home to UK 25th July. Within a few days of my return, she had to return to hospital, because one of the bags had come loose!
Well, a few weeks on………she had 2 subsequent trips back to hospital, for the same problem! A pain to be honest, the hospital is 4 1/2 hours away on the mainland!
However, on this last visit, they ran some more scans and tests, and a few days ago, she returned home to her caravan on Kefallonia, completely free of bags and tubes, and is back to leading a “normal” life again.
Apart from the couple of weeks post op, she has suffered very little. The last 3 weeks or so in hospital were frustrating, as she felt fine. On our return home, she was doing really well, eating sleeping, and getting stronger everyday. And this continued after I left.
She has not been prescribed chemo. The Doctors seemed very happy with the margins they’d achieved in surgery. The tumour was around the common bile duct, but had not spread anywhere else. They removed the bile duct, gall bladder and a lower prtion of her liver. The left and right biliary ducts were then attached to the small bowel.
Being in a foreign country, dealing with Doctors who did not always speak English etc etc, was not the easiset experience. Information was limited. But, 2 months post op, and she is doing fine. Her only concern is her weight. She is around 5’4″, and only weighs 49kg now. Her Doctor says it will take a while to put the weight back on, as she has had such major surgery, and it takes at least 6 months for the body to recover, even if the effects can’t be seen or felt. So I am hoping that she will indeed start to put on weight over the coming months.
She has to return to hospital in 2 months for a check up.
Of course, I want my Mum, to be the one who the cancer does not revisit! Part of me believes in fairy tales!
So, that is the update for you all. Early days I know, but that’s whats happening with my Mum!June 23, 2006 at 8:39 pm #14290
Thanks for your reply, very glad to hear your husband is doing fine, so nice to hear a nice story!! Are you in UK?
Anyway, checked out the margins thing, and he said yes, good margins, CLEAR margins were his words.
Wish they did diagrams and stuff here…….like getting blood out of a stone it is!! No, Dr.Moroulis, the other surgeon who worked on Mum, has been an absolute darling, inspite of our language difficulties!!
Forgot to ask about the stent today…….sigh….more blunt talk about what the future holds etc etc. I am really tired! Should get the path lab reports Monday………waiting……….and Dr.M is going to try to ensure a meeting with the oncologist before I go. I am supposed to return next thursday to UK. Sigh. Having a stubborn 67 year old Mother that lives in a tatty old caravan on a greek island is GREAT……….till she gets cancer!
Thanks friends! xJune 22, 2006 at 8:36 pm #14289lainyParticipant
So glad to hear your mother is doing so well. My husband had cancer of the bile duct valve last August and is doing fabulous. They removed his gall bladder, the head of the pancreas, the deuodenum, and the cancer in the valve. The doctor drew a diagram before the surgery and totally prepared us for what was to be and what the outcome could be. The doctor informed us that this is the absolute biggest surgery to the human body. Not life threatening but the biggest. He also said that for this kind of cancer chemo or medical options would not work, it had to be removed. The stent that was inserted before surgery was out after altho there was a stomach drainage tube left in for awhile. My husband did not feel like eating much for a long time and we slowly introduced more and more different foods.
Your mom sounds like a real fighter and that is good as attitude goes a long way toward healing.
Its been 10 months and he still cannot lift heavy things yet otherwise he is working, golfing and etc etc.
It sounds like your mom is on a good road to getting well.
Lots of luck,
LainyJune 22, 2006 at 6:20 pm #14288
Thanks for your reply Jules!
I have to say Mum is not in ANY pain or discomfort. She had an epidural for surgery, but only had pain for 2 days after the op. She is completely mobile, just too thin, and a liitle weak, but is working on this daily, taking walks, climbing stairs, and no problems. Also she has her appetite, but just finds it hard to eat TOO much, she is never a heavy eater, and maybe without food for ten days or so, she needs to build up her capacity again!
OK, I will ask about the margin thing, and why they kept the stent in. All I know is that the Docs were very happy about what they did. I’ll see if I can get some more precise info though!!
Re chemo, I have also read that the possibility that in can help is unproven. She says that she will just do what the Docs tell her….DANG i wish I was going to be around to talk all this through with the oncologist. I still have another 6 days, so fingers crossed.
Thanks Jules. What causes the hernia then? Strain? I have told her she must take it easy for MONTHS! She knows it!
I will check out the immunotherapy stuff you mentioned. Also, there was an exciting post about something called DAVANT. I need to read that again. I wonder if it would be relevant for my Mum.
Thanks Jules, love to you and your Dad!June 21, 2006 at 10:43 pm #14292julesParticipant
your experience in greece funnily enough does not sound that disimilar to the uk. i had to stay in hospital with my dad last summer (when he was nhs) despite nursing staff on duty none of them were able or willing to care for my dad properly. (different story when he went into a bupa hospital).
I am glad that your mum is doing ok – and it does sound so far as if she is.. there are just a couple of issues that you may want to ask the doctors about:
– did they get clear margins? – oncologists reckon you should have at least 5mm – some docs dispute this (this will be relevant when considering chemo options later)
– as for chemo post op, most people will tell you unless there is no visible cancer on a ct the benefits of chemo post op for cholangio pts is unproven, it really does appear to be a personal choice.. my dad did not have chemo – he has had a recurrance 6 months post op – maybe chemo would have helped..
– chemo is not the only option – (see my posting under clinical trials) – immunotherapy is in the media alot at the moment..(I am currently researching this and trying to find a clinical trial)
you have alot to think about – for now you just need to get your mum over the op. It takes time, it is major surgery, we found it very slow to begin with – but gradually she will shed all the tubes one by one and become more mobile, with mobility the bowels and appetite issues usually resolve. My dad had an epidural which worked very well for pain. The abdominal discomfort continued for quite a while after the op, mainly due to scar tissue and a hernia he suffered (common after abdo surgery of this type) – your mum should have physio input and help to get moving safely.
The only other thing i didn’t quite understand from your posting is why your mum still has a stent in situ. If the tumor has been removed then surely there is no need for a stent (stent holds open duct when tumor blocks it) my dad’s stent was removed during the surgery. Maybe you should query this with the docs?
As for diet – yes avoid animal fat – bile breaks down fat, need to go easy on the liver, also make sure your mum takes plenty of fluid.
hope this helps, any more questions please feel free to ask.
JulesJune 21, 2006 at 6:43 pm #14291
OK, Euston, we have a problem!
The Docs say Mum will have to stay in for probably another 10 to 15 days. Breathe in, and breathe out………….I have written so much to so many people…so forgive me, I will copy and paste from a personal email to my Brother…
There is some problem….DON’T WORRY! Doesn’t SEEM major, she hasn’t been rushed into ICU, she is still eating, still mobile and still getting stronger by the day! BUT……….she’s going to be in for another 10-15 days it seems. Found out today that it WAS a seriously major op. Dr.Moroulis got graphic, on my insistence! Oh yes, we had the medical surgery books out………Mum has had part of her bile duct removed, and part of her liver, and her gall bladder. This has rather freaked me out, to say the least……….fancy, I had NO idea. Now, trying to remember what he said about this new problem………something about……….hells bells Chris. You are the first person I have really shared this with. Found out about 4 hours ago. Had to break the news to Mum, that she is going to be staying here longer than expected.She took it on the nose, as she does. Within 15 mins, after a few “BIGGER BAGGER BUGGER’s” from her, she was already inventing reasons why it was a good thing, and what she could do with her time. She is awesome. I would be crying and whingeing if I were her!! I did after a few days in hospital when Tara was born, when I was told we wouldn’t be escaping as soon as I had expected!! But she really MIGHT be being brave now, again! I don’t think the dying bit bothers her as much as all this arseache in the meantime!
Anyway…………she says it’s the hospital food that does her head in most! So, I marched down to the general Docs office to consult them!! I have a fairly good rapport with most of them now, which helps. Anyway, in short, I am allowed to bring her certain foods to supplement her diet. Obviously, not being able to cook is limitting, but a variety of fresh fruit is good. We are each going to brainstorm this overnight, and see what goodies we can come up with! I had cherries with me the other day, and asked if she could have some, but it was a no -no. But I now have permission to give her WHATEVER, as long as we avoid animal fat as much as possible, dairy particularly. Know any good dieticians? Protein is good too, they want her to have protein. So, thats how it is Chris!
The problem……………right, as I understand, there a 2 main biliary ducts that go into the liver.Off these 2 ducts inside the liver, are lots of little branches, bit like you imagine a lung. Where they have cut the bit of the liver away, one of those “branches” is leaking. Remember she had that stent thing put in when we were over last? Well, that is still in there, and they have opened it, to allow the bile to drain faster(?) to relieve the pressure on the branches. Something like that!
I feel very inadequate coming to this site, I seem to have so little to be able to share in proper medical terms, etc etc. But I am just a person writing here as these things happen, with the little knowledge I have to impart…………………..oh, sometimes I wish I was in UK dealing with this!! Would it be easier?!!
Any similar experiences? Any advice/comment?!!June 17, 2006 at 11:30 am #151
Well, the last time I wrote was the day Mum came out of ICU, which was 8th June. Today is the first time I have been able to get out of the hospital to catch up on email etc. I have been living there mostly 24/7, apart from a couple of trips to the Hostel where I am supposed to be staying, to have a shower and change of clothes!! WOW!! The Greek system is very different to anything I have ever encountered, although I have to say that I have never been through major surgery with anyone in UK, so I have nothing to base my experince on really. But I am sure that on a ward with 5 patients, there would NOT be 5 guest sleeping on the floor too!!
Progress has been slow but steady, and I am just writing this as I am interested to hear if what goes on here treatment wise is similar to what happens elsewhere!
I would also hasten to add that the hospital where Mum is (Rio, nr.Patras, Greece), is a great hospital. The nurses and doctors have been lovely, but are SO stretched resource wise, mainly staffing shortages, and they have to work the most HORRENDOUS hours, most of them regularly have to do 30 hour+ shifts, and they have so many people in their care. I would estimate that on the corridor where we are, there are at best, 3 nurses to maybe 25-30 patients, and the doctors have to spread themselves over maybe double that. Hence the fact that every patient has a family member that stays with them, to attend to stuff that the nurses often don’t have time for. So I am now a regular nursing assistant!!
Anyway, this is how things have gone post op.
Initially she was a mass of tubes and drains. She had one tube up her nose and down to her stomach, to drain the stomach. She had a catheter. She has 3 tubes coming out of her side, on the end of each is a small container. Apparently the tubes go to various sites around the liver area, and provide the doctors with “a picture as to what is happening inside”. She also has various IV stuff, the usual dextrose and sodium chloride, and then had had Metranodizole (think that was it), and another drug called, I think, Timetrin, presumably also antibiotic. She has also had an iron drip a few times. Also Human Albumin drip.
The day she came back to the ward, she was in pain, but since then, has suffered very little pain at all, just occasional discomfort, which has been a great relief. 3 days after the op she was told that she needed to get moving, so much hampered by all the attachments, we progressed within a day from a shuffle round the ward, to several trips up and down the corridor. It has become easier on a daily basis, and she now has about 6 or 7 10 minute walks round the hospital.
2 days ago, they removed the stomach drain.Yesterday(June 16th)they removed the catheter, and for the first time since the op (6th June), she was allowed to drink, having been only allowed to suck on wet gauze since the op!! Also yesterday, she had a kind of noodle soup, very plain, and has been put on Fortimel, which is a kind of vitamin/mineral/protein drink. It is just a small bottle, maybe 750ml, and she has to drink that over a 12 hour period. And also she is allowed fruit juice now. She’s in heaven!! And REALLY hungry now, no major loss of appetite! The Docs say that depending on how the fortimel and pasta/noodley stuff goes, they’ll try her on something new tomorrow.
As for chemo/radio therapy, I have no idea. They are still waiting for the lab reports to come back, and I’m told they will discuss all this stuff with us when they have the results. They are really happy with how the op went, and with her progress. I must say, I didn’t think we would be in hospital so long, and I still have no real idea when we’ll get out. I guess it depends on how the food thing goes. They also told me that it has taken a little longer than expected, because they worried due to the fact that her white blood cell count was very high, and they were worried incase of infection, although outwardly, she seemed fine, temparature normal, blood pressure etc normal, but they didn’t want to rush things along, incase.
Apart from that, she has had a CT scan post op, and a couple of Xrays, I believe to look for fluid build up. Apparently she has a little, but nothing to worry about.
WOW! It’s been a real journey for us both. I’m so glad I’ve been here for her. I have less than 2 weeks though, before I have to return to UK. I hope I can get her home to Kefallonia before I go, and get her installed into her home again, although she is taking a small studio for a month, before moving back into her caravan!
Anyway, blah blah, I think I have covered everything.
As I said, I’m interested to hear if people in UK/elsewhere have had similar drugs/experiences.
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