New Member...Hi.

Hi Spuds and a very warm welcome to the online community which I hope you'll both find is both an informative and supportive place to be.

Hello Spuds  A warm welcome to the Eye cancer forum. I am so sorry to read about your wife's issues - I am aware that time is critical in dealing with issues like your wife has. I can't give you any answers as I have a different cancer, however by me replying your post will be "bumped" back to the top of the forum and other members of the Community may well have answers for you.

I have had issues with my personal cancer journey and I have managed to resolve these by:

* Contact with the hospital PALS (Patient Advice and Liaison Service)  They managed to make my journey progress much faster.

* Contact your MP as a last resort - this moved my case after the PALS team had brought my issues to the attention of the hospital management..

I hope the above helps.

Best wishes - Brian.

Thanks Brian, wife has a complaint lodged with PALS who have been good so far. She's also contacted her MP and our MS (we're in Wales). I also fired off a rocket at the weekend to both relevant Health Boards which has had a mixed response. Hopefully we'll know more today regarding a way forward. Thanks for your encouragement and advice, and all the best! 

Cheers Latchbrook. Yep, PALS are jacked up. I did fire off a rocket at the 2 health boards at the weekend too, as the various delays and systemic failures now mean the wife has waited nearly 3 months to start treatment after the tumour in her liver was first seen on a scan. Mixed response but at least it's a response. I will update profile when I can, but so much to do at the moment. Cheers!

Hi, I am having similar issues after a choroidal melanoma treated by plaque at Moorfields a year ago. Small liver lesions were found 10 weeks ago on a CT scan, and I am STILL waiting for an "urgent" MRI to look at them more carefully. I have lost 5 stone in 8 months and get other symptoms, but there is just no help available. How are your circumstances now? I'm so sorry you and your wife had so much to deal with. 

Hi 1967C. I'm sorry to hear of your diagnosis, and the recent issues waiting for MRI. You've been kind enough to make contact so I'll respond. However, please remember that there are different outcomes to my wife's and early intervention with the correct treatment can make a huge difference to this. No two diagnoses are the same. My wife's outcome was the worst I'm afraid. Long story short, the tumour, when discovered in September, was already 7cm in size and inoperable at this point. In March there was nothing, in September it was inoperable. However, this was a tumour, not lesions (although some were also visible on the MRI).

There was a pretty poor initial response from the 2 Welsh Health Boards, in fact the most meaningful discussion we had was in a Zoom meeting with the brilliant Prof. Nathan at Mount Vernon Hospital in Middlesex, where Tebentafusp is used with some success in the private sector, but after a critical incident after Christmas, Julia was placed into palliative care with MacMillan, District Nurses, and Marie Curie. She died on 20th February 2024, 14 months ago. Support from these latter organisations was second-to none, and beyond exceptional.

The issues we both raised while Julia was alive were around delays receiving scans and the results, and these were investigated, but the result of these "investigations" arrived some time after my wife's death, at the end of August 2024. Bottom line was that the Welsh Health Boards have the worst staffing levels across the UK in their Radiology Departments, necessitating scans being outsourced to other health boards, and in some cases to other countries! I can't comment on the staffing within your Radiology Departments but I imagine it's similar.

I could have pursued the matter further, but within the process of trying to accept my loss I found it too much of a distraction so I didn't. It wouldn't have changed the outcome and eventually I had to let it go, but I did make my feelings patently clear.

I'm sorry if this paints a negative picture, but I would repeat that not all outcomes are the same. My advice; Keep good records, not only of dates and appointments, but of conversations. Write them down while they're fresh. Keep a log. Also make as much noise as you can. Don't be fobbed-off. If someone says they'll "be in touch" tell them you expect a call back the same day. Engage with your local MP and tell your Oncologist you've done so. If your Health Board has a Patient Support service get them on board if they aren't already.

Finally, the best of luck to you. You say you've lost weight, and this is understandable, but try to look after yourself and stay strong. Remember there is treatment available, and there are some exceptional professionals working for positive outcomes. But you have to remain positive, and be proactive, pushing all the way. X Chris.

I’m very sorry to hear of the loss of your wife; that’s a big hit. I’m based in Wales and the delay in getting the scan results is very stressful and difficult having no control over it. I have in fact opted to go private for the next one as they get the result back in 2 days. Worth £750 IMO. 

I'm really sorry to hear that your wife Julia died. I was a bit nervous to ask if I'm honest, so I am very thank you to you for taking the time to explain, and with no doubt a lot of bad memories. I have heard that the situation is particularly dire in Wales, which is a real shame. I don't blame you at all for 'leaving things' as they were after she passed away too, I would probably have been the same in your position, too many other huge emotions to deal with...

Thank you for all your advice, I wish you well, and I am very grateful for your honesty. Take care. xx