Hi

I was diagnosed with HCC liver cancer in June this year - I had no symptoms, nothing at all until one day I got a sharp stabbing pain in my right side, so sharp it stopped me dead in my tracks. 

Initially I thought I pulled a muscle,  but the pain didn't go away. I work in A&E so booked myself in, within 4hrs I'd had an ultra sound and a CT scan. I was then called into a room at told I have liver cancer, 3 tumours. Go home try not to worry and the cancer specialists will be in touch soon - GO HOME AND DON'T WORRY! I've just been told I have cancer and the prognosis isn't looking good. I'm 63 looking for to retiring this year had heading off travelling with my wife, well that's all gone out of the window as I can't get travel insurance now, not unless I want to pay 8k for the year (with lots of restrictions)

I had to wait 2 months before my treatment started, they were the worst 2 months. It was impossible to stay away from the dark side "I've got cancer am I going to see Christmas,  my next birthday, I'm 63 and feel fit and well, maybe they've got it wrong. I was scared!!! worried about the future and leaving my wife and family. There was a mad rush to make sure my affairs were all in order (I created a death book) which contained everything, policies, accounts, passwords, contact names and numbers - funny but I found doing this quite relaxing, as long as I didn't focus on why I was doing it.

I had an appointment with the oncology team in August, it was fantastic (if that's the right word) they explained everything, put my mind at rest. They offered no guarantees as to the outcome, or to long I had, but still I came out with a real positive attitude - I'm going to fight this I'm going to kick its arse! (well i'll give it my best shot)

I've had 6 sessions using immunotherapy and I feel good, a few sideffects, but non that have stopped me living. I do get very tired,  and it's not uncommon for me to take a cheeky nap in the afternoon. I've even go back to work, I work part time.

Friends and family (my children) say I should give up work and relax,  take it easy. I say NO working is the best distraction, while working I can forget I have cancer. I see people that are in a far worse place than me, it snaps me back into reality. While I'm able to work I'll continue to work as it gives me something else to focus on othe than myself. 

I have just (this week) had my first CT scan since starting my treatment - I won't lie deep down I'm petrified of getting the results on 17th December because this will indicate whether the treatment is working or whether the cancer has spread. I tell myself I feel so well it can't have spread but at the same time I remind myself they I had these tumours for quite a while (1 year+) undetected. 

I'm scared of my cancer,  for the first time in my life I'm not in control of my future. For the first time in my life I can't take control.

Talking to my oncology team I could get 3 - 5 years. If I get to 3, then I should get to 5. It will depend on the treatment continuing to hold the buggers at bay and not let them go walkabout to other organs.

The best advice I would give is keep a positive mind and attitude. Eat well, fermented food, no processed food. Plenty of nuts and seeds, full fat milk and full fat blue cheese. (good job I was doing most of this anyway) I was also told no alcohol in order to give my liver its best chance to fight back.

Talk about your cancer, laugh about it. Give it a name, I've called mine 'The Boys' as I have 3 tumours on my liver 10.5, 6.5 and 4cm 

I consider myself lucky right now because I'm completely pain free and have been for over 2 months. If a cough or laugh I have to hold my side because The Boys will give me a little dig as a reminder that they're still there. 

Good luck to us all x

Hi Liverman, wow just like me you've really had a crash course. This is me in August 2023. I only found out while being treated for what eventually became a perforated eardrum and to be hones when they said there was something else which wasn't right I didn't take too much notice. I had just been told my loss of hearing in 1 ear was permanent. It wasn't until my husband bought the subject up that it clicked - I'm going to die. The next few weeks are still just a blur. Scan, consultation, biopsy and then that 1st meeting with my Oncologist that I actually took on board and it became a reality. I won't go into detail but suffice to say everything was in order with a week. My husband took over and let me digest what was going on in my own time. Now in December 2024 I am 22 cycles of Immunotherapy down the line and am doing well. Tired beyond belief at times and it's not just physical it's mental I see things piling up around me and sometimes I really cannot be bothered. Nails are like paper, skin is very dry and I have gone off of certain foods that I used to love oh and my hair is a bit thinner but apart from those that I deem minor I'm good. Try to be out and about as much as I can. Like you Holidays were a big big stumbling block. We own a Camper Van and we used to take off in May and return in July travelling all over France. We always meant to go further afield but love France so much that we were content to just bumble around. We also took a couple of cruises around the Norwegian Fyords, That had to stop and it hurt beyond belief. A suggestion is that you try Insure With. They ask a lot more questions than some of the others but I got a quote for just over £200 for a week in The Canary Islands, not bad at all.

Well it's ladder time, a tile has come loose on the roof and needs mended so I will say cheerio.

Be strong, determined and stay fit and healthy and most important of all is think of yourself and listen to your body.

My best wishes to you and your family for a peaceful Christmas & a positive 2025

Jackie

Good evening Jackie,

Thank you for your message. I am exactly on the same drugs you are on, but after 25 sessions, so last Wednesday they took the Bevacizumab off so I only had the atezolizumab a wash and off to home. Like you I tolerated both very well apart for some pains at times so I take 5ml Morphine.

On Tuesday I am going for a gastroscopy under sedation to check if the cancer has spread? then on the 3rd of Jan a CT with contrast (which i don't like at all).and on the 13th of Jan a meeting with Professor Middleton to tell me the results how the cancer is doing after 2 years, Big day for me ! my daughter and wife will be with me.

It's amazing you are into classic cars, in fact I have a Citroen DS 23 Pallas 1975, in this beautiful "Argent vert" green argent. I had it Since 1980. I have restored it 3 years ago but still a few things to do mainly the electric loom. 

May I wish you and your family a very happy Christmas and good health.

My best wishes to all in this forum

Chedly

Thank you Chedley,

Yes we are very big into Classic Cars and have 3 + in the family. We have a 67 year old  TR3A which came from America and John my husband converted it to a RHD which took a very long time. We also have a not quite classic in the form of an Mercedes  SLK. John's son Ian has taken our Lotus Elan to Newcastle & also the Lotus Excel - both of which need a bit of work on. The reason we bought the Mercedes is that we owned a Saab Sonnet lll but the sill was much higher than the seat and at the time I was having back problems so it had to go. We did extremely well selling it for way over what we had paid for it. We also are part of the MSA Marshall club and we Marshall on a regular basis. I have made a note of you  Big day and I hope all goes well. My next scans are sometime in Jan - both with contrast but I'm not thinking about that !

A very happy Christmas to you and your family & hope your 2025 is a peaceful one

Jackie

Jackie,

Thanks for the tip on the travel insurance. I'll give them a call in January. One company I called wanted over £2,000 for a week in Greece, in may 2025. So I thought we'd be left touring the UK. Don't get me wrong there's nothing wrong with the UK we've been to some lovely places, it's the unpredictable weather. Doesn't matter when you go you have to take clothes for every eventuality (in the hope you won't wear most of it) 

I see you're into classic cars, always fancied doing a restoration, I wanted a Triumph Herald convertible. I promised myself when I retire I'm going to get one, not too shabby; but enough to keep me busy and give a sense of purpose. Then the diagnosis came and my life has now taken an unexpected and not planned path, so at the moment it remains top of my bucket list.

I think I said before my treatment is going well, early day only 6 sessions in, I feel well, I'm back at work (I'm smi-retired I work 3 days a week for the past 3 years) I'm waiting tge results of my CT scan, should get 17th December - the timing could have been better. I'm scared about the result, I may feel ok, but the scan my show different.

Every new unexpected pain/discomfort and my mind goes off to the negative. My body has changed since the start of my treatment,  I've lost a load of weight,  so much that my chemo nurses tell me I need to eat full fat foods as I can't afford to shed anymore. I've gone off my food, mainly because in the beginning my mouth was sore, felt/looked like the skin had been peeled off, so eating was the last thing on my mind.  It's much better now, now I can eat but things just don't taste right. My wife keeps trying to encourage my with different meals (she is an fantastic cook) but it doesn't get my taste buds going.

The tiredness is the one that is the most frustrating! If I sit for longer than 10mins I can just nod off, and can sleep for an hour+. I've learnt to accept this and now if my body tells me to have a sleep I do, and I feel so much better for it - I understand now why the clinicians looking after me say "listen to you body, it knows what it needs"

Anyway that's me done for now, have a good day.

Phill.

Hi Phil,

Thanks for your message. Going off your food is normal for some but when I was like that I tried to eat little and often but your taste buds are undergoing a real bashing so you need to retrain them. Me, I have gone off of a lot of my favourite foods, but I haven't gone off food ! what I do have I enjoy and I'm not losing weight in fact it's gone the other way. Tell your nurses about your sore mouth and they will give you a non alcoholic mouthwash which works well. Tiredness is a total nightmare and there's nothing can be done you just have to let your body take charge. Try and get exercise as its a real help. Basically look after no. 1. Can I wish you and yours the best Christmas possible and a positive start to 2025

Jackie

Jackie,

Thanks - its really useful/helpful talking to people in this forum, people that really do understand what we're going through

You're right regarding food, I've found food I can eat without the discomfort. The nurse gave me some mouthwash that took a while to work but did in the end.

Merry Christmas and Best wishes to you and your family x 

Hi mine is Neuroendocrine tumours in my liver that started with bowel cancer. My symptoms were totally misleading and I thought it was menopause.  The specialist has now said the 2 main symptoms I had were actually the cancer...one was hot flushes but not sweats like you'd associate with the menopause. I'd go bright red all over and then 5 mins later it would disappear.  This apparently is toxins from my liver. The other was loose bowels and a bit of bleeding. I did one of the poo samples ( think they call it a fit samples or something) and my doctor sent it off in the January and it came back clear. Again apparently this is a sign of the bowel cancer but my specialist thinks I must have been right on the borderline. I've since found I've got 3 to 5 years which was a massive shock and hence why I've not been able to come on this forum until now. I still can't believe at 55 this is my fate BUT one thing I've learnt is to be as positive as I can and take each day

 Sorry if that's a bit TMI but I want to be honest if it may help someone recognise their symptoms. All the best to you and I won't say try not to worry because we do don't we but take heart that you got the scan and it's a step forward x

Jojomojo23, sorry to read your story. Stay on this forum you're surrounded by people that share your fears, worries and concerns, don't ever think your alone.

I too have been told 3 - 5 years it's a massive shock that I find hard to accept,  especially as I feel quite well apart from a few sideffects from the chemo.

I try and live my life as a did BC (before cancer) I've returned to work, it acts as a good distraction, while at work my colleagues see me as Phill not Phill with cancer. They're interested in my treatment and how I'm coping with it, talking about my cancer and the treatment actually helps me to accept and understand the journey ahead. 

Phill