ron-smith
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Hi Salsarcat
I have been very lucky with post-operative problems. Each time, pain relief has been given by epidural, first time for 3 days, second time for 2 days plus 1 day on a morphine pump. After that it has been plain, old paracetamal. I just reached a point where I hated being in hospital and was desperate to get out, if only to get a good night’s sleep.
How is your husband faring now? Any follow-up tests or scans yet?
All the best to him
Ron
Kate
I have only recently returned to this site following my own surgery, and was very sad to read your recent posts. I do hope you have had some more positive news during this last week. One thing for sure is that you do not need to apologise for having an occasional rant on this site. You will always receive sincere support.
All the very best
Ron
I am happy to report that I underwent a complete removal of the right lobe on Thursday 29 March. The scariest part, as far as I was concerned was wakening up to find out what had been done. Mr Powell explained that he would initially use laparoscopic procedure to see if there was any evidence of spreading. If there was, then he would just close up and and we would take any further treatment from there. His first words to me when I woke were that it had not spread and he had removed the lobe. Recovery was pretty good again and I was released from hospital on Tuesday afternoon. During the first couple of days I felt a bit rough but I am now getting over that and feeling much better now. I have an appointment with Mr Powell on 24 April so we can discuss chemotherapy. I don’t know if it will prove to be successful but I do feel that I want to try everything to stop the cancer coming back. Having surgery the first time was fine and I felt really positive. The second time was more difficult both physically and emotionally. Could I go through it a third time? At this point in time the answer would be no! I realise that this will sound very selfish to many, particularly those of you who have not been able to have one procedure. Perhaps my opinion will change with time.
One interesting thing that emerged was that the PET scan is not fool-proof and may very well not pick up cells that have spread to the lymph nodes or are less than one centimetre in size. I am glad I did not find that out until I was on my way to theatre! The second thing is that all the doctors, including my GP, knew I had a hiatus hernia but nobody thought to tell me. Last but not least, my wife, Margaret, was diagnosed with a large gallstone while I was awaiting the result of my PET Scan. Life is never boring!
All the best to you all
Ron
I do not think anyone can tell exactly how long a tumour has taken to develop. When I was first diagnosed in July 2006 I asked the very same question. I felt I wanted to know if I could recognise a time when something happened. Did I maybe injure myself and just shrug it off or had I had a virus or something else a bit unusual, but not given a second thought? The best the surgeon could offer was that it could have been there for some time. But I don’t know if that meant weeks, months or years.
I was fortunate that my diagnosis was made before I had any real symtoms and was able to undergo a partial resection in August. However, the first follow-up CT scan in Februay showed spots on my right lobe. After a few tests and a PET scan it was decided that it could be operated on again and on 29 March the whole of my right lobe was removed. What I did learn during this period is that there is not just one type of cancer cell responsible for cc. Some are very aggressive and so fast growing whereas others are not aggressive and so slow growing. This also accounts for, in part at least, why some combinations of chemotherapy work well initially then seem to stop working. What is actually happening is that the aggressive cell types are being targeted first. These are successfully reduced but this allows the less aggressive cells to gain dominance and these then need a different combination.
I think all of this demonstrates why it is probably impossible to date a tumour.
Very best wishes
Ron
Thanks for the info Jules. Glad you had a great time. We love Florida and have been going there for 15 years. Started going to Orlando, but now we spend all our time on the Gulf Coast. It is so relaxing and the beaches are beautiful. I certainly hope we manage to get back, even if it is just to sell our apartment. Anyway, it is probably out of our hands just now. Just have to see what happens. Re the insurance, I was expecting our existing insurance company to formally ask questions about my health but nothing so far. Of course they only know about the surgery and the temporary clean bill of health, not the recurrence. I tried the cancer backup site but for some reason my computer took a scunner to it and kept hanging. I’ll try again tomorrow.
Thanks again
Ron
Jules
I have just come across this posting and wondered how your dad got on with holiday insurance? We go to Florida every year and have travel insurance as a “freebie”” through a bank account. Last year, we had booked our flights before I received my diagnosis and subsequent resection. The trips were after the surgery and the insurance company covered us for the trips. Now I have been told the cancer has recurred and I am waiting to find out if it will be suitable for surgery. So if we want to go to Florida this year (assuming I am physically able), I will have to tell the insurance company about my current condition.
Sorry, I have just re-read that and it does ramble a bit!
The point of the question is – did your dad get insurance and if so, was the premium loaded?
Thanks
Ron
Jerry
I was so pleased to read the great news about your latest scan. I read the blurb about the treatment and see that the beads continue to work for 14 days. Does this mean that you have regular courses of treatment? The only treatment centres in Europe seem to be in Germany. Do you know if they are expecting to increase the treatment centres, particularly into the UK?
All the very best
Ron
Hi Jeff
I am really pleased to hear that your current chemo treatment is going well. I will keep my fingers (and anything else) crossed for you and your upcoming CT scan. I now appreciate what a difficult time it is when you are waiting for the CT results. On the other hand, if you weren’t expecting to be around to have the scan then any results are good; just some are better than others. I also appreciate how beneficial having a sense of humour is. You certainly have that and it is obviously doing you the world of good. Keep the faith!
All the best
Ron
Well, I had my CT scans last week and received the results this week. Not good news. The scans show a few spots on my right lobe, the side where the original tumour was located. At present, there is some doubt as to whether they are restricted to the liver or have metastasised from or to the liver. Apparently, the histology following the resection, was not 100% clear as to whether it was a primary or secondary cancer and if, in fact, it is cholangiocarcinoma. The smart money seems to be that it is cc.
So, what happens now? Well, I did suggest that a PET scan might be appropriate to determine the confines of the tumour. The surgeon thought this was a good idea. The problem is there is only one PET scanner in Scotland. He is going to try to arrange it. But this should not delay surgery, should they decide to go ahead with that. The likely procedure will be to remove the whole of the right lobe. Would that not have been a better option in August when they were so pleased that they had been able to remove just a small section? It’s a rhetorical question. Even if it were the case; we all know that hindsight is always 20:20. There is always the possibility that they will open me up, see what’s there and close me back up again. That is a scary thought!
Chemo is now being mentioned. When I had my original surgery I fully expected to go straight on to chemo, but that is not part of the protocol. So why is it offered if surgery is not an option? Would it not have got to any small cells that were left behind following surgery? I have to say that I am not a great fan of chemo but I guess, even if I have surgery this time, it is something I am just going to have to accept.
I am sorry if I am sounding angry and a bit depressed but this is the first opportunity I have had to let my thoughts escape. My family does not need the added pressure of me going off on one. But you dear people may well understand my feelings just now and you can always close the page if you don’t want to read it. Thanks for giving me the chance to vent my feelings a bit.
Ron
Thank you very much for taking the time and trouble to read and reply to my posting. I know that I find talking about what has happened to me is a large part of the healing process and I hope that you all feel the same. In reality I am not as despondant or concerned as my words may have made me appear. In fact, I am quite positive. I believe the tumour was found, by chance, quite early and had not spread but it is still a bit of a worry. In the words of my GP shortly after my surgery…”Someone up there likes you, or, perhaps not!”. I suspect I was like most folk and prior to my diagnosis, new very little (nothing) about my liver and the rest of my inner workings. I had never had any illness worse than the occasional cold or bout of flu and even when I was having the scans I felt really well and thought I was destined for a very common, straightforward, gallbladder operation. Well that notion was quickly dispelled and since that time I have spent a lot of time trying to learn as much as I can about liver cancer. What I have found out is that it is wideranging and extremely complicated. I now realise just how much information I need to get from my consultant but when you only have an appointment every 3 months that can be difficult. Perhaps it is different in the States? Anyway, I hope to learn a lot here and be in a better position to ask the right questions at my next appointment.
All the best
Ron Smith
