I have a terrible habit of mimicking anyone who has a strong accent. Not in a ‘I’m taking the piss’ kinda way, it comes from a place of love and respect. I have a lovely colleague who has a beautiful Birmingham accent and I just can’t help copying how she speaks, even down to the way she says ’mom’ instead of ‘mum’ Rach, if you are reading this, I’m really sorry Bab. :-p
So you can only imagine my accent as I arrived at Clatterbridge Cancer centre in early July, faced with a barrage of Scousers chatting away to me as if I was an old friend (side note, I went to university in Liverpool and I think I pretty much was scouse after 3 years of ‘study!’)
Before I continue with my day at Clatterbridge, I should talk about how I got to this point (i hope you have cleared your schedule for this…)
Last time, myself and Mr Me-Myself and Eye had just received the devastating prognosis of terminal metastatic cancer of the liver from Ocular Melanoma (btw, I am never sure if I have the exact medical terminology right, so apologies to anyone remotely medical reading this!) I was offered immunotherapy with the average life expectancy of 12 months (cue sucker punch to the stomach) but I was so sure that there must be other options. I wasn’t ready to write myself off just yet and endure months of awful treatment if the outcome was that I was going to die soon anyway.
Now this type of thing is where Mr Me-Myself and Eye truly comes into his own. Faced with what seems like an impossible challenge or problem, his hypo-focus and need for an answer takes over. Imagine one of those cartoons where an evil character (bare with me) is creating a weapon that will destroy the heroine and there are words and numbers dancing above their heads as they calculate and devise the downfall of the heroine (obviously ignore the ‘taking down the heroine’ bit, Mr Me -Myself and Eye wasn’t trying to plot my demise… but you get my drift)
His dedicated research found Mr Sacco, an Ocular Melanoma specialist based in Clatterbridge Cancer centre in Liverpool. He not only specialised in Ocular Melanoma but also in the metastasis of the disease and is at the forefront of trials which have been successful (but are not available on the NHS), treatments and knocking on the door of NICE to get treatments approved. Mr Me – Myself and Eye also researched a treatment called Chemosaturation which was pioneered in the UK in Southampton and has had good results in extending life from ocular melanoma liver metastasis (not currently available on the NHS – there is a theme developing with the most successful treatments being approved by NICE but not available on the NHS…)
Now at this point, I want to acknowledge the support that I have from my friends and family, as soon as they heard what was happening to us as a family, without fail everyone said ‘as long as it doesn’t involve running a marathon, what can I do?’ I’m not very good at accepting help and I was overwhelmed by the support offered but I am so utterly grateful to everyone who has reached out, sent a random message and who has offered help. As for my friends running a marathon on my behalf…. There is still time 🙂
At this point, I knew that I needed to talk to Mr Sacco but I wasn’t 100% confident that the referral would be a speedy one from Doogie Howser to Liverpool (no offence…) so at this point I called in a favour. One of my good friends, I’m going to call her Mrs Brenning, had connections at Clatterbridge and incredibly she managed to connect me with the team there and have a phone consultation arranged within a week.
Anyone who knows me knows the internal conflict that I have with the privilege that I have to be able to call in a favour of a well connected friend compared to others in the same situation and I don’t take the opportunity lightly. It highlights the unfairness of the systems in this country but I feel that this subject could be a blog all on its own.
Our meeting with Mr Sacco felt positive, he told us that Ocular Melanoma liver metastasis acts differently to Melanoma metastasis and in their studies, the immunotherapy offered had an 11% chance of having any impact on the cancer. He spoke about different types of treatment available (depending on HLA levels – all a bit technical!) a trial that was starting in the autumn and Chemosaturation. It was almost like we went from no options to too many options! He also booked me into Clatterbridge for blood tests, MRI and CT scans (apparently when Clatterbridge tried to retrieve my scans from Leeds, they couldn’t be found!)
So fast forward a couple of weeks later and there I was, sitting in Clatterbridge Cancer centre being offered free tea and coffee from the lovely tea lady and her cart (Mr Me – Myself and Eye was delighted and even took the biscuits!) When I mentioned that we don’t get free tea and coffee in Leeds, the tea lady promptly replied in a thick, wonderful scouse accent “don’t worry love, you’re in Liverpool now, we’ll look after you.” My reply (in an equally thick scouse accent) “Ahhhhhh ta very much love… ta-rah!”
Hx
Me, myself and eye 