hello, we are due to fly out on the 19th for his second round. I was amazed at how efficient the process is. No ides yet if it’s working we will find out when we go back but another tumour in the liver was found that the NHS didn’t even see. I have no faith at all in them and we refuse to see them now. you get a consultation, MRI, treatment, recovery, CT and another chat within 5/6 hours. Professor Vogl is an unbelievably clever man. He reads the scans immediately to see what he’s dealing with. I was amazed that in the UK a scan takes weeks to sort to then be reported on usually by a Junior Radiologist to then go to MDT and then to an Oncologist who can only read from notes. It shows you just how bad the system is here. We flew to Frankfurt and stayed about 15mins from Hospital. Ubers where around 10 euros and hotel about £120 for 2 nights.
I found the full process amazing to be honest, Prof Vogl is lovely. A man of little words but that’s fine because he just wants to get to the point. More than anything he gives hope where others don’t. Search Laura Pearce if you haven’t heard of her and you’ll see what he managed for her. Lots of stories of his patients on instagram too. The language barrier in general at the hospital is sometimes a pain but not with the Professor himself. He doesn’t give you false promises but he gives you hope which we’ve had none of. Stage 1 in 2021 to stage 4 feeling the best he has in October last year and see you later nothing we can do, I honestly despise the NHS it’s like they train people to make it doom and gloom
Again, thank you so much. I can empathise with you a lot.
I feel my partner has had good treatment when she is in the hands of the nurses administering chemotherapy but we too have but with consultants completely get what you mean about 'doom and gloom'. We have come out of several appointments feeling that continual reference to "palliative care only" has been unecessarily repetitive.
I also feel that there seems to be a guide they work to (on the NHS) that does not lend itself to looking down every possible avenue, but is restricted to whatever regime is prescribed for that particular cancer, With anal cancer, it has not changed as far as I am aware in over fifty years!
Thank you again and every possible good wish to your husband and yourself.
We’ve often felt like we’re just another statistic which angers me so much when Tom is only 39 and diagnosed at 35. They need to update the word palliative to something like maintenance, I think it would make a lot of people feel a little better. We’ve had most of the oncology appointments with a pharmacist - it just says everything about the NHS and cancer ‘care’. When Tom had his operation last year, the staff didn’t have a clue about things I asked, one of the surgeons asked which hospital I worked at and couldn’t believe I wasn’t medically trained. I just do my research!
How long have you guys been on this awful journey for?
It was a couple of months before Christmas that our particular world changed forever.
Again, I have had to have a chuckle at something you said. I have taken on the role of chief researcher and not a day has gone by that I haven't been looking into something to try and help. Last time we saw the consultant, there were two Specialist nurses there too and oneof them asked me the self same thing about my medical training as I was asking about brachytherapy, liver ablation, abdominal perineal resection amonst other things!
I wouldn't say I feel much less helpless than when this all started but I get a little bit of comfort as I hope you do from knowing I am doing everything I can.
It’s crazy that the ‘specialist nurses’ don’t seem to be the specialised , or at least that’s what we’ve found. We ask a question and they need to check with the surgeon or oncologist it’s bizarre!
