A summary of the journey from diagnosis of spread to my liver at the very end of October to getting ourselves together and seeking treatment…
Late October — The late Iain Galloway?
24/10/13 — Initial diagnosis on US scans in Sheffield Hallamshire showing a lesion in left side of liver.
25/10/13 — Contacted Kathryn Curtis at Ocumel to get details about joining etc. and to discuss action should lesion be confirmed as OM.
29/10/13 — MRI at Weston Park, Sheffield (told to go to Royal Hallamshire by letter but sent up the road at ‘cheese counter’ ticket check-in).
November — Despair, Ocumel UK, Southampton and some hope
04/11/13 — Results from MRI indicate 5 lesions. Not a good day!
04/11/13 — Called KC at Ocum
el UK who indicated need for contacting the Southampton team who specialise in this area asap, and urged chasing things up to avoid admin problems.
05/11/13 — Called Southampton General Hospital team who wanted MRI sent through; we do this straight away.
06/11/13 — Joined Ocumel UK.
06/11/13 — Have been having trouble getting liver appts at Birmingham QE so decide to make a private appt at Priory Hospital to see Darius Mirza. Have to get MRI details to him for 6.45pm that evening so a lot of chasing people & the results go to the QE by mistake and not the Priory (fortunately we are chasing recipients too & sort it out with time to spare). According to Google he is very eminent in liver mets, albeit usually colo-rectal. Speak to him that evening and he is very encouraging indicating the viability of resection even if he has to take out a lot of liver. Seems like a good surgeon who I have an immediate rapport with and he offers to take me over to the NHS…we end up chatting about sand dune formations!!!
07/11/13 — Chased Southampton who now have MRI details and they make appt for 18/11/13 to have MRI (abdomen) & CT scans (upper body & abdomen) at different hospitals.
08/11/13 — Chase Southampton for follow-up date to the upcoming scans to speed things up and they agree additional meeting on 20/11/13 to discuss results.
18/11/13 — Visit Southampton General for CT scan while MRI is done at Royal Hampshire a couple of miles away. The parking there makes Sheffield parking look easy! Bump into and speak to another OM patient who is having scans too…this looks like the place for us.
20/11/13 — Appt with Dr Matthew Wheater who discusses scans and says CT clear and MRI confirms what Sheffield said. Low tumour burden, Delcath a possibility and would wait until early Jan for surgery, probably won’t feel symptoms until April. They will perform a laparoscopy in a couple of weeks to get a better picture.
22/11/13 — Pestering So’ton again we get the laparoscopy for 27/11/13.
26/11/13 — So’ton have me down the day before for pre-ops and I travel by train. Staying at the Jury’s Inn hotel with taxis included at their expense to/from the hospital (they’re very short of beds). Pre-ops on the 26/11 afternoon.
27/11/13 — Laparoscopy in the morning under General Anaesthetic and am allowed out at 4pm when a friend comes to pick me up. This travelling to So’ton is tricky especially with a 6-month-old boy and means it’s tricky for Gen to come along each time.