Nothing medical to report…and I know that currently because I saw a dermatologist. Sounds random given my “melanoma care” has been transferred to Oxford, but the local hospital felt that in addition to the annual Mole Mapping they provide me with that I should see an actual dermatologist.
So in typical me fashion I forgot, had it rescheduled & then almost forgot again because it wasn’t in my head as an appointment because it wasn’t in Oxford!
I went, stripped off & left the appointment less than 5 minutes later.
I felt uncomfortable…it was the same department that didn’t diagnose my Melanoma 3 years ago…probably even one of the same dermatologists that had looked at the offending mole & advised it was nothing. So when after the quickest skin check I have even known looked to be complete I piped up “both of my Melanoma’s were atypical so were hard to spot” the dermatologist responded with “Yes it happens”
Everyone is entitled to a second chance…and I am the last person to hold grudges. I understand how hard it is sometimes for Moles to get spotted when they don’t behave according the defined rules. Maybe it is just my heart that still hurts because whilst I was irritated how quick the skin check was, I couldn’t wait to get out of there.
A huge part of my care at Oxford is continuity & trust.
That is the case for many Melanoma patients, especially the female ones.
Getting undressed and being examined – closely – is not the most relaxing of experiences.
We like to know that the person who is looking at our skin is someone that we are safe with – not safe in a sinister way – I would never imagine for a second that any medical professional would behave inappropriately. I mean safe by the “feeling” & knowledge that they are actually really looking – paying attention. That they remember. That you are not just another half naked body they are obliged to look at and “get it over with for both of you” as quickly as possible. That if there are aspects of your skin you want looked at that you are not up against the clock because they have only allocated 5 minutes per examination.
I have that safety now….that knowledge that if my appointment lasts longer than 10 minutes it is ok…in fact generally they last 15 or 20 minutes because I am blessed (insert scoff)with hundreds of ever changing Moles.
I don’t feel apprehension when I visit Oxford…which seems odd every time I walk under the doors that read “Cancer & Heamatology” (ok sometimes I do – but not generally)….I feel a strange sense of pride.
I am pleased to have such high standard of care & proud to tell others about it. I think that other patients like me are entitled to receive just as meticulous levels of care.
Interestingly I was at Oxford with my non-medical appointment hat on recently & this came up.
I first met with Nikki the CRUK & ECMC Clinical trial engagement nurse & discussed an upcoming Melanoma event at Oxford Hospital they have asked me to speak at…and during the meeting we talked about things patients experience. Nikki mentioned that one thing she took to her colleagues, was the feeling of “failure” I experienced when I didn’t get onto the clinical trial. My feedback has instantly changed how they inform patients that don’t get onto clinical trials for whatever reason. …See…I have reason to feel “pride”. They actually listen to & learn from patients.
I also met with The Prof (Prof. Mark Middleton) discuss the Melanoma Patient Conference because he has agreed to be one of the key speakers.
We talked about how much has changed with the way Melanoma is treated & we spoke of some of the new developments coming up.
At Oxford they are due to start building a huge new addition to the Cancer provision. A Proton Therapy unit!…just need to hope that the parking at Oxford which is potentially the only downside of the hospital can cope!
My headspace is rather consumed with the upcoming conference plans.
I have viewed venues & chosen my favourite which is absolutely perfect for so many reasons!
Funding conversations with Pharma & other sponsors are ongoing. Some leading Pharma companies have been really quick with their responses – and extremely positive. I’m even getting some potential funding interest from charities & other corporate entities which is really exciting.
It’s that time & uncertainty that weigh on me….I can’t “book” and finalise the venue without the actual money in the account…and the paperwork part isn’t quick.
But the agenda is strong & the majority of speakers invited have all confirmed already.
Finally there is this real sense of community. I wanted this & dreamt it because I saw the need… the first people I told encouraged me because they too saw the importance of a national Melanoma Patient Conference. The leading Medical professionals all seem to agree too – they want to get involved – they want to help so that patients get informed & hopefully live better & longer. Other patients want this – the response to the pre-registration on the website is phenomenal! Pharma clearly see the relevance too. I love the idea of us all working together to benefit Melanoma patients.
The boxes are starting to all get ticked. My head is spinning…so many things to do…I so desperately want this to happen now. I work all day and then open a different laptop to work on the conference…I wake in the middle of the night worrying that something might go wrong & it won’t end up happening. I wish my Spinning was less frazzled me & more gold hot pants Kylie…thankfully for all concerned that isn’t a swap anyone needs right now!…although it would be amusing to go to my next skin check in gold hotpants !!!