I start off with a * — I am posting this Saturday 27th February as I was really poorly Friday evening, night and most of today. Nearing 40˚ fevers, feeling absolutely horrid, in and out of sleep, sweating, rigors, headache, muscle pains and more. Not pretty. I’ve barely surfaced this evening to post this blog. This is so tiring and frustrating. I just want to get on with my life. But, it is what it is. Here’s yesterday’s blog.

Friday 26th February 2021

Today has been hard. I didn’t have a great night, waking up confused and I believe hallucinating at least once, and not sleeping well all morning, my chest not being great and so on. I woke up feeling rough and my vaccinated arm is very sore but that’s to be expected. 

I have been waiting in another course of IV Ceftriaxone (Rocephin) from the GP as advised by Dr Tosh to continue with IV antibiotics until we can sort out the hospice admission and tests. The prescription was done Wednesday and taken down to the pharmacy and ordered in by the pharmacy (nowhere stocks IV antibiotics except hospital inpatient pharmacies which is not possible to get dispensed from by a GP prescription). They were expecting it yesterday. It didn’t come. So they hoped it’d be in today (Friday), but the suppliers insist to the pharmacy that they gave them the course and refused to re-dispense to the pharmacy. B, one of the pharmacists, flipped his lid at the supplier and demanded a new course be sent. The supplier said it may be delivered Saturday but they won’t reissue.  The pharmacy then said to us “what’s your plan B? If the antibiotic doesn’t arrive tomorrow morning (Saturday)and we didn’t have one. Of course this would all come to a head Friday early afternoon, but no one on the pharmacy side are to blame, somethings gone wrong at the supplier or delivery end and it’s just unfortunate it still hasn’t resolved by the afternoon of today (Friday). 

My problem is my previous course of IV Ceftriaxone finished Thursday and so we needed the course to start today, which we would’ve done had things gone to plan. We can’t risk the Ceftriaxone not coming into the pharmacy tomorrow as then I’ll go at least 4 days without it — getting new IV antibiotics prescribed on a weekend is an almost completely impossible nightmare, as 111 won’t prescribe IV antibiotics, and even if we get a prescription from an out of hours GP (big if), no pharmacy can order the IV antibiotics in again till Monday (and then the earliest the delivery from supplier to pharmacy will happen is Tuesday). Last time I went 5 days without IV antibiotics I got so ill I nearly didn’t make it through, so we can’t afford for that to happen again. My regular community palliative care nurse we contacted first but couldn’t get hold of her, so we rang the district nurse liaison to ask to be put through to the office of the community palliative care nurses and unfortunately the DN system including their phones had completely gone down (of course it would happen the rare occasions I ring them — but it’s no ones fault so that’s not a criticism, it’s just Sod’s law). We rang Fair Havens but Dr Tosh had just left, so we were put through to another professional who told us to ring the GP surgery, ask for another prescription to be done and if we get trouble, ring them back. Then, Helen my community palliative care nurse rang and said she’d speak to one of her colleagues, Gill, and finally we got the new prescription from the GP, mum drove down to get it and dropped it at Morrison’s — Gill checked they can get it in for tomorrow morning — and so either way I should get the IV Ceftriaxone tomorrow so I can start the next course with only one dose missed. It’s Morrison’s in Hadleigh who can often get the IV Ceftriaxone (and other IV antibiotics) the quickest — normally my GP gives us the paper prescription to allow us to ring round pharmacies and find the quickest, but they automatically sent the prescription down to Elora on Wednesday, and Elora Pharmacy sometimes struggle to get IV antibiotics quickly, and despite Elora’s hard work and best efforts, sadly the process broke down at the supplier end. 

Fingers crossed this crisis is averted now. I’ve spent much of the afternoon and evening with a fever, and whilst one could say it’s the COVID vaccine I had yesterday, I’m not convinced it’s that alone as the symptoms I’m having are the same I’ve had most days since my condition deteriorated and the refractory infections set in during September 2020, with high fevers, muscle aches, headache, nausea, shivers (rigors), sweating attacks, kidney pain, abdominal pain and more. 

A little note — if anyone from Elora pharmacy read this, you are angels, thank you so much for all you do. Also thank you to the team in Morrison’s pharmacy, Hadleigh, who have been fantastic over the three months or so.

Thank you also to Fair Havens, the community palliative care team (especially Helen and Gill) and my GP surgery.