One & Only
Never did I think that I would be firing this many blog posts off in such a short amount of time! 3 this week! Kirsty's on fireeee 🔥 (rugby lot - finish that chant off however you feel fit)
Me and Birmingham are NOT friends
I've still not got my HER2 result (the decider). And its frustrating the HELL out of me. I called Birmingham on Monday to ask if the result was available to which they advised me it was and had been sent onto my Oncology team in Leeds on Friday. Que me ringing Leeds and wanting to know what was going on. Leeds say they haven't heard anything and will chase Birmingham in anticipation of the MDT (multi doctor meeting) that takes places every Tuesday. So yesterday (Tues) I was expecting a call giving me all the info and letting me know what life is likely to look like over the next few months. Spoiler - it never came.
I also had a Nuclear Medicine heart scan booked in the afternoon so toddled off to that, only to be told I wouldn't be having it as it was no longer needed. But this was only after the Nuc Med Radiographer checked my treatment plan with me to justify the scan (we ALWAYS justify any radiation exposure to keep them to a minimum) - he said that the scan is indicated if I was having the drugs to treat HER2+ cancer. So off he went to contact Oncology and see if it was still needed and they were told I did not.
Now, I am not daft (Ry may say otherwise) so in my head I'm thinking this is them indirectly telling me that my HER2 result is negative and the Oncology team just haven't rang me. Not gonna lie, I was FUMING 😡 at this point. I'd traipsed over to another hospital from where I work, paid for parking, starved for 4 hours (I'm a hungry gal) and lugged my new bag full of all my work stuff that looks like I've left home (I will put a pic for reference). Then I thought Oncology were ghosting me and everyone else knew more about my diagnosis than me (stay with me here).
I was upset all last night about this, getting myself worked up that I can't get to and find out the information I need and feeling that my life is been held in other people's hands. I became overwhelmed with the thought that I needed to get in as much fun and good stuff before I started any treatment but I have no idea when that is so what can I plan?! I ended up going to bed with no tea and instead ate (another) family bag of chilli heatwave doritos. Whilst laid in bed I convinced myself I had a collapsed lung (pneumothorax) as I got this pain in my right chest and started catastrophising that the tumour has collapsed my lung and I couldn't breathe. It hadn't and I am literally fine. I think all the crying and hysterics just pulled something. Lesson learned. 🤷♀️
Getting a grip
I got up this morning and have been working from home as again I was expecting a phone call from Oncology (if it wasn't yesterday, surely it would be today?!). It's really hard having these types of phone calls at work! Because I'm in a patient facing role, I don't like to have my phone on loud or be distracted from giving them my 100% care and attention, because this is the absolute bare minimum anyone deserves. But then comes the panic that I'm gonna miss a call from a hospital number in which I have no idea where it has come from and no direct line back to (why do they do this?! please can we fix this!).
Anyways I ended up leaving my BCN a message and she called back. This is where it gets juicy. There are still no HER2 results! What the actual F! I basically got fobbed off by someone in Birmingham on the phone. My lovely BCN said she had rang the actual lab in Birmingham and they have said the result is not available at present and advised her to send them a date it is needed by. Errrrm now! She also said she thinks another Dr had told the Nuc Med department I didn't need my scan based on some previous results - as there are no new ones for them to base the information on. Annoying!
I had over a 4 week wait on my initial biopsy result and have already sent a PALS (Patient Advice and Liaison Service) to Birmingham and have now asked to escalate this to a formal complaint with the addition of the delay in my HER2 results. I know you're probs thinking I'm been a whinging Winnie, but surely there are standards and these have to be met? People's treatment options and life actually depend on this, its not just an inconvenience.
Advocating for yo self!
So what I'm saying is you have to not be afraid to advocate for yourself! That means not been afraid to push and poke. Not been afraid to make yourself a nuisance if it means that your care and needs are brought to the forefront. It's a funny one because I work in the NHS and get the pressures and stresses but it also winds me up because I know how things should be done too and notice when things fall short - would another lady with no idea of how the systems work know that she can push and poke and that it's not ok? Would she be left waiting for a phone call because she thinks that's all she can do? This angers me even more - its just not right!
One and Only
Anyways, enough ranting and I'll finish with some good news. My scans from last week (CT & Bone Scan) have been reported and say they think there is only 1 rib affected (the 6th right one) and that the 4th rib that was up for contention is a healing fracture, NOT another met (although I am rather confused how I managed to fracture it 🤷♀️). Whooopp! They do this by comparing to previous scans and looking for any changes in size, appearance and uptake of the tracers they use. So for now - I have one solitary lesion in my right 6th rib. You're on your own you little fucker! This also makes the possibility of surgery more favourable as there is only 1 place to chop out rather than 2. But we'll see what the Thoracic surgeon says on Fri.
Reyt, I'm gonna go focus on the good news and breathe about the HER2 results and see what happens over the next few days. I'll keep you posted.
Kirst xx
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