Hello everyone, I was diagnosed with stage 4 gallbladder cancer in March 2024. I live in a remote area and I'm eager to connect with others in similar situations for some positive online coffee chats. Thanks in advance for reaching out!
Oh that is excellent care, I've had brilliant care myself at Clatterbridge and aintree hospitals. Even when the NHS is under immense pressure they step up when we need them.
I have also had papillary thyroid and mucinous ovarian cancer all 3 of my cancers are incredibly rare and they have all been primary cancers, totally unconnected and like I said earlier I started this in 2016 aged 46 and now I'm 55 and still here. So hope and a positive outlook helps massively!
Good luck with all your appointments you'll need a secretary soon to keep up with them all ha ha...
Wow you have been thru the mill. We are not far apart I'm based in Oldham where I had the initial treatment in a brand new ward was like being in a private hospital. There was a lounge with big internet TV, hot drinks, snacks, crisps, biscuits and fruit. Plus ice lollies after the endoscopy as well as sarnies. I cannot fault the fantastic care and staff there.
So far Manchester Royal Hospital has been brilliant nothing too much trouble and sorting out my tests etc very quickly. The consultant surgeon was to the point took time to explain everything and the specialist nurse chaperoned us to our appointments.
My diary is full of letters and appointments with an elastic band around it.
I am 67 retired last July from teaching, part of my anger is enjoy your retirement but barely a year in and this has happened. But trying to sort things out in UK with my family what ever happens to arrange around my chemo when I know more
Thank you for your kind words and we are all in this for the long run. Take care
Not been offered them but it is early days yet. I have changed my diet drastically stopping all processed foods, smaller portions, really reduced fat intake. Gone to BOB milk as makes my Roibos tea much nicer.
I am overweight but lost 6kg during my recent hospital stay over 4 weeks. So now trying to do the same before my operation.
Incredible... The new Royal Liverpool and the new Clatterbridge hospital (again in Liverpool) are lovely, similar set up, private rooms in the Royal and the views from the chemo floor at Clatterbridge are fabulous you can see a lot of the city skyline.
You seem to be in capable hands over there in Manchester, we really are lucky in the North West with so many world class cancer hospitals in east reach.
I also have the attitude that you're a long time dead so live for today and let tomorrow take care of itself... It's worked for me coping with this whole saga. I also write a blog which started as a way of making sense of it all but has grown to include all aspects of my life really. It's cathartic for me to write about it all. I also did one hundred days of positivity posts on my Facebook. Sounds weird I know but it helped me get through even the darkest days, even if it was a bad day I could write that I was positive that it was sh%t day etc..
Sounds all new age but it really helped me to focus on positive things rather than the self pity wallowing that can creep up on you. Gallbladder cancer is a lonely one to get as there is little to no current information about it however, I found a charity very recently that are inclusive of us with this type of cancer, they are called AMMF see link below.
I too feel your frustration about retiring and then not being in a position, yet, to enjoy it. Yes, from the day I heard I may have cancer. My diet changed. No alcohol, no processed foods, protein with every meal. Little and often. No dairy, gluten or sugar. I also have IBS. I had lost 2 stone before they tested my poo for lack of digestive enzymes. Weight now stabilised at 6.5 Stone ( I am only little , 5ft, but this weight is worrying).
Just what seems the constant pain after eating is bringing me down, when I used to gradually feel better between treatments, I now have few days with any relief. It will help to know if the treatment working. It would help to know if it is the Creon causing the abdominal pain.
You seem to be in good hands where you are. Things are Very slow and overstretched down here in Kent.
Thank you, yes I cannot fault the NHS so far everyone has been so caring and supportive. Next week I am meeting with one of my Macmillan key workers for a face to face counselling session then a meeting with others.
You take care, I am 6ft 1" but weigh around 125kg.
Thanks for the support and hope the appetite gets better. I am trying different healthier foods and use a small plate to help reduce my intake
Had not heard of Creon just Googled it and it's a pancreatic enzyme. I am also T2 diabetic but take Metformin.
Chatting with others dies seem to help may the journey a little easier and thanks to Macmillan for all their support, literature. We also have Maggie's centre at the Royal Oldham Hospital so making use of their support in conjunction with Macmillan.
Thanks, yes was back today with a very thorough pre-op assessment by the nurse medical history and medications. I now have a spirometer to exercise my lungs every day
Told I will be in the HDU unit initially with 1:1 nurse and on duty anaesthetist. No dat as yesterday but still need my MRCP scan
Initially my daughter was dad let's get the operation done but now sees that me planning possible UK trips around my chemo is beneficial to my mental health. Would like to do a week's cruise on the Thames with my family as well as a flight in a WW2 plane the type my late father did his initial RAF training in
Will check out the charity later.
Hope you are having a better day today, with chemo etc I would imagine better days and bad days
Yes, having something small planned around chemo is a good idea. My husband is seeing a counsellor through pilgrims hospice and she says how important it is to have something to look forward to. However , keep in mind that sometimes a cycle or treatment can get delayed unexpectedly due to any number of reasons. So we have the idea of what and when and then only book and make arrangements once I know my day 8 treatment is going ahead after the prem chem appointment. As the following week is my week "off".
