You listen to me every 6 months talk about the follow up scans, the scanxiety and the results.
Well it’s that time again. It explains why I’m more than a little antsy too. No matter whether I’m thinking about it or not, somewhere in the depths of my brain is a little voice saying ‘maybe this time’. With every twinge or pain that I get in my boobs (and believe me I get a lot) or my back, I wonder if it’s related. I still get shooting pains which apparently is from the surgery and when I’ve previously discussed the pain with the consultants, I’m told that perhaps this is ‘normal’ for me. But what IS normal? How can I differentiate what would have been there anyway and what is because of the surgeries or phyllodes?
I digress but perhaps you might understand why I get anxious. So last Friday I trotted along to the Royal Marsden. Appointment card, request for a chest x-ray and letters making and changing my ultrasound appointment firmly in my hand. I hadn’t received a mammogram appointment letter but presumed that this would be booked in when I got there and that the letter hadn’t yet arrived – previous experience of my receiving the appointment letter after the appointment had taken place fresh in mind!
The waiting room for ultrasound is full but we’re seen quickly. I’m greeted by my usual lovely sonographer and introduced to a trainee sonographer who is due to qualify into the Marsden in a few months. I mention that I’ve not received a mammogram appointment. The trainee does the first exam. It’s painful as she goes over lumps and bumps (I presume scar tissue) and on occasion stops to have a closer examination of areas. It’s a little off-putting watching her face as she thinks she see something and hasn’t quite mastered the poker face yet – I guess that’s part of her training. Then my usual sonographer takes over and they discuss their findings – “usual ‘oddness’, scar tissue and lobular neoplasia” but nothing unusual for me and apparently nothing to worry about. I’m reminded that I should follow up for a mammogram appointment today.
Next stop chest x-ray. This is such a quick procedure. Stand in front of a black panel and breathe. All done. I was keen to get this x-ray today. I’ve had a weird ‘catch’ in my breath and occasional wheezing of late… I’m hoping it relates to the virus I had a few months ago and nothing more sinister.
Now to head to the Outpatients Reception to see if I can find out about the missing mammogram. I’m given a telephone number for a sarcoma CNS. I call internally to discover the team are all in an MDT meeting. Disappointed I head off and leave the Marsden.
I’ll get my results from my consultant at the next appointment which is in 5 weeks time. It’s ridiculous that the results appointment is so long after the scans – more scanxiety!
Yesterday however I managed to speak to the sarcoma CNS. She wasn’t sure why I hadn’t had a mammogram appointment and went away to check. My consultant has now left the Marsden and apparently I’m now under a different consultant but my mammograms are under the breast cancer team. WHY???
According to whomever she spoke with, I don’t need mammograms in my followup and that an ultrasound and chest x-ray is enough. Aggggggh the agreed followup was for annual mammogram and six monthly ultrasounds and chest x-rays because Phyllodes doesn’t always show up on ultrasound until it’s grown bigger. I explained this as calmly as I could… and then promptly burst into tears when I hung up the phone.
The Marsden are great. They’re a centre for excellence for sarcoma. BUT I’m waiting for an appointment that actually goes according to plan. A time when I don’t have to run around the hospital chasing up something or booking in to a different location or calling up to find out what’s going on. Truly I’m not sure but assume that within the hospital they have a multitude of non-communicating IT systems. If only the realised the anxiety that these inefficiencies caused to their patients and carers. I know I’m not the only this happens to as am often having my ear bashed in the waiting room listening to someone else’s anxiety.
So I guess I’ll have to wait for the sarcoma CNS to call me back. And then wait for the mammogram appointment. Or perhaps wait until my consultant appointment in July for the results of the ultrasound and chest x-ray. Discuss with the consultant in July about my having a mammogram, get that booked in, turn up for another appointment and then have to have a further consultant appointment for the result. Just as well I’m not in full-time employment with all these days off.
I wonder who my new consultant is?