clarem

Hi Kristinj,

Welcome to the board and for becoming a poster. It is incredibly hard watching someone you love go through this and being strong for them. I’d have been lost without this board to say and share the things that I couldn’t with my family when my sister was ill.

You will get all the support you want and need here. There is always someone who knows the answer to a question or comes along to prop you up when you need it.

Hi Dakotabeann,

Great news that surgerynismstill an option. My sister had portal vein embolisation prior to her surgery. Enjoy your few days away together over the weekend.

Dear Ghannam80,

I am very sorry that your mum has died from this disease. Her struggle is over now although your loss must be overwhelming.

Hi Dakotabeann,

welcome to the forum although imam sorry that your husband has cholangiocrcinoma and you have had to find us.

I really do hope you get the news on Monday that surgery is an option.

Hi Patzel,

Welcome to the forum and for being a great advocate for your boyfriend. From what you’ve posted, it sounds like you are used to a different medical system to that of the National Health Service (NHS) in Scotland.

Whilst in theory a doctor can look at a scan and tell you immediately what is seen on it, in reality it tends to be formally reported on by a doctor specialising in imaging before the patient is told the result. It must seem very frustrating when you are used to a system that seems much more efficient. The NHS does not tend to give out copies of reports when they are done but that does not mean your boyfriend is not entitled to it. If he wants copies of everything that has been done up to now then he will need to formally write and ask for these.

What he absolutely should be getting without having to fight or wait is communication from his doctor and explanations given about his diagnosis, treatments, what the scans are showing, what the lung nodules are and what the plan to do about them. Good communication from his doctor would answer all these questions for you and him and he is perfectly entitled to this and needs to know. Unfortunately the NHS does not always provide the kind of care that patients need, for many, many reasons. I am not saying it is right and you should not have to fight but sometimes, relatives and patients need to quite forceful (I like the squeaky wheel analogy above). On the other hand, the NHS provides excellent care and I have to say, my sisters care from day one could not be faulted. She didn’t have to fight for anything, her doctors communicated with her or me and despite never seeing a report or scan, she/we always knew exactly what was going on with her care.

Would you mind saying where your boyfriend is being treated? Do you know if he is under a team specialised in dealing with his type of cancer? I can’t emphasise how important that is. Gavin – one of the moderators live in Dundee and I know he will have stacks of advice to give you.

I love the NHS – it does great things but, I agree there are times when it is not so slick and as a carer or patient you have to keep your foot down and drive forward (I say that as a nurse that worked in the NHS). I don’t like the unpredictability of this disease and have first hand experience of the turn it can take. My sisters rapid decline shocked her surgeon and GP and caught them off guard. Go with your gut Dan – I wouldn’t be happy being no further forward after 2 months.

Hi Gigi,

42 Years together – that is really something. I cant even begin to imagine how much you must miss him.

X

Dear Mel,

I am sorry to read that your mum passed. Despite your loss, your kindness in considering those battling this disease and wanting to give them hope and a reason to fight is very touching.

Your mum must be looking down feeling incredibly proud.

X