1

(7 replies, posted in Members' Cafe)

I am a proud Scotsman and although I have spent most of life living in England I always get up to Soctland as often as possible. I know this sounds like a cliche but we seem to be more proud of Scotland as other nations. This may be because we are a small country and feel we need to show our love for our lands.

I am always proud when I have travelled to support various Scotland sporting teams ie football and rugby. The Scots never cause any trouble (with a couple of execptions, notably Wembley and Manchester), get on with their hosts and leave a good impression behind.

One of my personal experiences was in Bordeaux for the football World Cup in 1998. I travelled to watch Scotland v Norway. In the hotel where we stayed there was a mix of Scots and Norwegians and the night before we spent the evening in the bar together having a few drinks, playing pool and table football, getting to know our new friends. The next day whilst travelling to the ground I remember seeing a huge Scotland banner being walked along the main street with thousands of Scots behind it picking people up along the way. There was a party atmosphere in the ground, fans were not segregated and there was a lot of good natured banter during the game, which finished 1-1. I can say it is probably the best game I have been to due to the atmosphere and the time I spent with new friends.

I agree with everything Ron says, Scotland is a beautiful, historical country and I could type for hours why this is the case, but I shan't bore you any further! If anyone is considering a trip to Scotland then go for it, I guarantee you won't be disappointed.

Tom

2

(12 replies, posted in General Discussion)

I also experienced night sweats last summer before I was diagnosed with cancer. I was woken up and had to change my shirt in the night, but then they left once I had been diagnosed. They did return for a short time before I was told the cancer had returned a month or so ago but I have not experienced them again.

Tom

3

(17 replies, posted in General Discussion)

Dear Kris and Lisa,

I hope all of your treatments are helping and working to help you fight this disease. All the very best to you both.

Tom

4

(33 replies, posted in Introductions!)

Hi again all, thought I would give you a bit of an update. I started my next next cycle of chemo yesterday with Gemzar and Cisplatin.

But with regards my hip I met with an orthopaedist on Monday to decide upon a course of action, had an x-ray and it turns out my left hip is of most concern as the socket of the joint is affected so with my prognosis they are worried about recovery times. I have been referred to the Royal National Orthopaedic Hospital (which is the leading bone tumour unit in the UK) for a more specialised opinion. I have an appointment tomorrow morning so hopefully I will have a plan of action tomorrow! It is causing me a lot of hassle as it is affecting my mobility which is the most important thing to me as it means I cannot get out and about as much as I want to, being forced to stay in makes me feel more like a prisoner to this disease and brings me down.

Tom

5

(18 replies, posted in Members' Cafe)

I just wanted to show my appreciation for the team at the convention, thank you for all your hard work and effort and raising the profile of this cancer.

Tom

This article appeared on the BBC website yesterday and I thought people on here would be interested to read it. Although the study was based on breast cancer you will notice there is confidence that it will apply to other (and hopefully all) cancers.

http://news.bbc.co.uk/2/hi/health/7813072.stm

7

(33 replies, posted in Introductions!)

Afternoon guys and girls,

Next week is shaping up to be a busy one! I have an appointment to see the orthopedist on Monday to discuss my hip which is getting better day by day but still causing me problems. Then I have chemotherapy on Tuesday and have received a letter today containing my appointment for the Royal Marsden Hospital for Friday to see what they can offer.j

Am also seeing my oncologist tomorrow morning, I am going to ask for a bit more information as when I saw her last week I didn't really ask any questions after the I was given my prognosis, which was understandable, as I wasn't thinking straight at the time. But now my head is feeling a bit clearer I can hopefully begin to understand things a bit more.

This week I have generally been feeling ok, helped by the fact it has been my week off chemo, just had the problems with my hip. Will be interesting to see if my CA-19 levels have increased (I was told they were at 80 last week). I am expecting them to have gone up but we shall see. The lumps on my head are still evident and I need some more info on those too.

Wishing everyone a great weekend!

Tom

I am in the UK where I'm sure you know we have a National Health Service which has its detractors for a variety of reasons but my experience of it is once they have diagnosed a disease and deal with it the level of care is unparalleled. Before during and after my surgery all levels of care were absolutely amazing.

We also have private health which I am taking advantage of for my chemotherapy, the amount of drugs and options available are more numerous than the NHS, as some drugs are not available (but saying that some operations, such as my liver resection are not carried out privately). It is also, provided you have insurance, much quicker a process. Please be aware I am not criticising the NHS at all, I was so thankful for all the care given to me during my recovery.

I have the best of both worlds since I have taken advantage of both options (I have private insurance through my employer). I feel sorry for everyone who cannot get the highest levels of care due to the simple fact of money, it is in my opinion disgraceful, but a sign of the times.

9

(33 replies, posted in Introductions!)

Today has been much better, I struggled again to get out of bed due to my hip, I think I must have hurt it in some way during the night. But there has been a lot of improvement today and I can now move around a lot easier. I chased the orthopedist again today and am expecting to hear from them tomorrow.

I do have copies of my most recent scans and records which I am going to forward to other specialists to garner their opinions.

Hi Rose May

i underwent a resection in November 08, removed almost 60% of my liver and my surgeon advised it would be back to its normal size by Christmas. Apparently up to 75%-80% of the liver can be removed and it will regenerate.

I did not feel any effects during the regeneration process and haven't had any problems with liver function since, just a recurrence in other areas.

Tom

11

(33 replies, posted in Introductions!)

Hi all,

Thanks for your messages of love and support. I have of course told my family, I am back living at home now since my surgery so they have been with me every step of the way. Obviously they are finding it difficult to deal with this as am I but we are attempting to be strong together. There have been tears over the weekend, and I am thinking how to tell the rest of my family and specific friends.

I do think the hip area is of concern right now, I am waiting to hear early this week about a course of action as I do get some pain from it at the min. It has only come on since I was told about it so I am unsure whether the pain is from me overcompensating and trying to protect the area too much.

My father is my great help at the minute speaking to the other doctors from me, and he will get in touch with the other docs, does anyone have any specific recommendations for me? I do not have any specific names of other oncologists, but am willing to contact anyone who can offer another opinion.

I keep trying to stay positive and tell myself I am young so I can fight this, but am still coming to terms with it. I just can't believe it is happening to me, I have too many things to experience in life.

Tom

12

(33 replies, posted in Introductions!)

So had my CT scan on Wednesday and went to see my doc yesterday morning who confirmed what I had thought and that the cancer had returned. My liver is fairly clear but I have a mass in my abdomen and spots in my lungs, along with a couple of other areas. I also have lumps on my head, which while not cancerous are being caused by it.

There is also some evidence of a mass in my hip which could cause bone weakening and potentially cause my hip to fracture. There are specialists looking at my scans now to see if they need to operate.

The upshot of it all is that I have been given an estimated prognosis of around 6 months. I cannot understand it but I haven't been crying, whereas before when I was just thinking about it I could hardly stop the tears! I think I was just in, and maybe still am, shock and am feeling pretty numb at the moment. I am going to continue with chemotherapy, getting second opinions from other docs of course and have been advised to see the team at the Royal Marsden hospital, a leading cancer unit in the UK who can offer other options. It can't hurt to look anyway.

Yesterday was the worst day of my life and now I have to get on with looking at other options to see if anything can help (any suggestions more than welcome) and seeing what I can do in the time I have left.

Tom

13

(6 replies, posted in Members' Cafe)

I suffered from ulcerative colitis for 8 years before developing PSC and then CC, so in my case there was definitely a link between all these factors.

David,

All my best wishes for appointment with the oncologist, I have my next CT etc on Wednesday and completely share your view that the waiting around is the worst part.

Take care

Tom

Hi Terri, that is great news , all my best wishes for the recovery! I was out of bed on day 2, and out of hospital on day 9.

Tom

16

(163 replies, posted in Introductions!)

Back pain was the reason why I went to see my doctor in September 08, leading to the diagnosis of cc. I still suffer from pain and have had difficulty controlling it. I have been prescribed Oxycodon, I am now taking 40mg/day which seems to be working well.

I have trouble sleeping at the moment and have Oramorph to take if needed during the night. I am currently undergoing chemo, have been since early December (Gemcitabine) and had Cisplatin added for the first time last week. The chemo could be the reason for the back pain, I hadn't thought about it before to be honest.

17

(18 replies, posted in General Discussion)

Hi everyone, once again thank you for all your response, suggestions and support. I am struggling to cope with the news at the moment but have a strong family and friends to help me.

I have a CT scan on Wednesday which will show the spread of the disease and determine the extent of it. And then where we go from there who knows.

Tom

18

(18 replies, posted in General Discussion)

Hi all,

Thank you for all your kind words of support. I am going to get in touch with one of the other specialists for a second opinion on my condition. I am off today for my first chemo session with cisplatin added to the gemzar, so fingers crossed I will feel ok.

Many thanks again, I am eternally grateful.

Tom

19

(18 replies, posted in General Discussion)

Hi all,

So I went to see my consultant yesterday to have a check up. I had developed a couple of lumps on my chest, forehead and back of my head in the last couple of weeks, along with a build up of some sort at my resection scar, near my belly button. She examined me and and confirmed my worst fears that the lump near the scar was tumour-related, and that if confirmed, it would be incurable.

I am due to have a CT scan in two weeks where this will be confirmed but I feel like my world has fallen apart. After going through the surgery in November I thought I would have more time than this before it returned. I do not have any sort of timescales as we need to see the extent of the spread but this will come from the scan.

I am going to have Cisplatin added to my chemo regime from Tuesday (currently I am on Gemcitabine only) and will have treatment two weeks on, one week off, which will hopefully control the spread. I will search these forums for info on Cisplatin but any info on side effects would be helpful.

I am just in a state of shock at the moment, at a loss as to what to say to my family, who obviously are suffering too. I have started thinking about everything I am going to miss and never going to have in the future. i just need an outlet for this.

Tom

Carol,

I too am recovering from my resection, approx 4 months since the operation now. I have been having problems with my back, and this has caused me problems with sleep, which is the main issue I have.

I initially began to recover very quickly and was up and running during the Christmas time managing to go out and enjoy myself. But since then I seem to have gone downhill, this may be due to the effects of my chemotherapy regime. I struggle to get out of the house at the moment for any period of time, making me feel cooped up and frustrated. I am trying to talk to people about it but am a very private person and keep a lot to myself, which I am trying to rectify. I just feel I don't want to burden other people with my problems.

I agree that is the not knowing which is the worst part, every new pain seems to fill me with dread that the cancer is returning and things are going downhill. I am 26, so also young to have been diagnosed.

Tom

Hi Suzanne,

I underwent a resection in October 2008. I can say that I did not have any major issues with my recovery (with reagrds to my liver) following it. My resection removed all the tumour in my liver, three lymph nodes below the liver and bile duct, which the surgeons were not expecting, thus the operation took nine hours rather than the four expected.

My main issues were with the drains which I had in each side. Whilst the drains were still inside my body they were not filling with liquid but as soon as I had them removed a lot of liquid seeped and I had bags over them for a couple of weeks.

For recovery just eat as soon as you are allowed, my appetite returned quickly and was back on a full diet only a few days after surgery, which I was not expecting.

My abdomen muscles still haven't recovered totally, they are still feeling tight but this is to be expected less than three months after surgery I guess? How long did you take to recover?

I wish you all the very best for the surgery and the future.

Tom

Another possible contact is the HPB unit at Addenbrookes Hospital, Cambridge. I had my surgery there and am continuing to be seen by them. I only have good things to say about them and my surgeon, Dr Emmanuel Huguet.

I can give contact details to anyone who wants them.

Thanks

Tom

23

(163 replies, posted in Introductions!)

Vincent, whilst in hospital this week I was in a ward with a guy who has had a stent replaced in his throat a couple of times and he is now making fantastic progress. Yes it is a pain but I'm sure they will get it sorted and help your mum.

All the best.

Tom

24

(6 replies, posted in Introductions!)

Hey all,

Just returned home last night after spending four days in hospital following the pain I experienced in my back, legs and shoulders. I have been put back on Tramadol and paracetamol. I waited two (!!!) days for a scan and it showed I have pocket of fluid about 4x4cm near my liver. They are going to monitor it and hope it dissipates itself. They do not want to drain it as it is in an awkward position and getting to it would be tough. Will return to the clinic next week and see how things progess.

Meanwhile, its on with the chemotherapy!

Tom

Hi all,

I underwent surgery in November and am currently recovering from the resection. This has been going well but I have been experiencing a lot of pain in my groins, mainly when walking. A shooting pain hits me when I walk at times in both legs. I am seeing my doc this week so will confirm, but was wondering if anyone else had experienced this?

Other things I am suffering from include pain in my right shoulder and pain in my right hand side of my back, which I assume is my body still coming to terms with the surgery.

I have also just finished my first course (of 6) of Gemcitabine so have this week off!

Any help would be appreciated.

Thanks

Tom