Today I had an appointment with my neurologist at Salford Royal Hospital. All my previous appointments have been at Stepping Hill, but last time I saw him, he suggested I see him at SRH, where he and his team are based.
So, last night I spent quite a bit of time preparing by making notes and gathering documents together, set my alarm for 6.30am and following a sleepless night, got up and ready and set off for the hospital.
I was a little early so had time to grab a coffee and admire the hospital building, before checking in for my appointment.
It was at this point that I was informed that there was no appointment and my neurologist is on holiday! I was told that I should have received a letter about this and it wasn’t possible to check if an alternative appointment has been allocated because her system couldn’t communicate with the neurology system!
I was upset/angry/disappointed by this, perhaps more so than I should have been and basically sat in the waiting room for quite a while, feeling helpless!
As mentioned before, Salford Royal is quite an impressive hospital, with a cafe and shops, so I indulge in a little retail therapy and another coffee, then set off for home.
I used to work in Salford and know of a sneaky back way on to the M60, missing out the M602 …what I didn’t know is that there are roadworks on my sneaky route, meaning my journey home took almost 2 hours! I think the radio station I was listening to must have known …
I was relieved to get home, then flabbergasted to find this on my doormat …
No mention of my appointment being cancelled, but notification of another appointment (with a different neurologist) next Wednesday!
I don’t know what to make of this?! The new neurologist is one I’ve never met, but know from others that he is not pro HSCT. I would really prefer not to see him. I have put in calls to my neurologist’s secretary and my MS Nurse and am waiting to hear back from them.
Why does all this matter? …Well, as you know, I am worried about the progression of my Multiple Sclerosis and would like to have HSCT as soon as possible to try and halt the disease and prevent further damage to my brain and spinal cord. I have been in touch with a clinic in Russia and am frantically trying to raise the funds to pay for treatment.
Fundraising is stressful and exhausting, at a time when my mental and emotional reserves are low and I also don’t relish the prospect of travelling for treatment, or more precisely, the journey home following such a gruelling procedure. If I could have HSCT in the UK on the NHS, much of my stress would be removed and I could focus my energies on staying well and taking care of myself. I’m find it really hard to keep going with all of this.
I know the chances of me getting treatment in this country are slim, but I wanted the chance to talk to my neurologist about it to see if he would consider referring me. I also hoped that, even if he felt unable to support my treatment in the UK, he might at least give me his blessing and be willing to monitor me when I get back from Russia. Now, I don’t seem to even have the chance to speak to him!
Anyway, I’m off out for my work Christmas do this evening, so will hopefully pull myself together, put my happy face on and have a good evening. I consider myself very lucky to have fabulous workmates, so hope to be feeling a bit brighter by the end of the night 🥂
