Delays and frustration

So Monday 1st March 2021; up bright and early to log on for work before I disappear off for my appointment at the hospital. Some nerves and apprehension but part of me is excited as I feel as if today will be the day I get an update on what is going on.

Thanks to El, I have a little online map to help me find the right place and I find the cancer/oncology department and reception area. Coming from the main entrance of the hospital I outdo myself in stupidness as I cannot see a reception desk, so I take a seat near everyone else and think well I’ve got an appointment time surely they’ll just call my name out? (When does it ever work like that!?)

After sitting there for 5/10 minutes and seeing/hearing numerous people go past me and speaking to someone, I pluck up the courage to stand up in front of all the staring eyes and go round the corner, yep there’s the desk and I go finally check in. They ask you to get weighed so I head over to this little room and they weigh me, then I take a seat again. I wait for 5/10 minutes again until a nurse comes and grabs me to take me through to see the doctor, she explains on the way down the corridor that she’s one of the specialist nurses who I’ll have direct contact with throughout my time with Addenbrookes. Down the corridors we go and eventually we find ourselves in office right at the back that seems more fitting of supply closest with my doctor sat in there. There’s barely enough room for one person but the nurse squeezes in alongside me to make it real cosy.

The general niceties begin, how are you, how’s the recovery been, any issues, any questions. Only one and that was ‘is it okay to put my fiancé on loud speaker’.

So I give El and call and I pretty much say after you Doc, what’s happening? And again it’s disappointment; the doctor runs over everything we already knew..you had a tumour, it was removed, you have tumour markers in the bloods and two lymph nodes in the pelvis are swollen. I’m almost sat there thinking yep, good recap but what’s new?! They appear to be skirting around the idea of chemotherapy and allude to the fact that the next CT scan required to check my lymph nodes has not been booked yet! Why o why has it not been booked!? We are nearly a month after surgery knowing full well I need this scan completed before anything else can be done! ‘It’s okay we will request the scan and update you’. El is great and pushes on the fact that we have discussed chemo and it is something I want to do, to be safe and sure but again the doctor and nurse remain tight lipped.

‘Any questions?’ I felt like saying 1) this could have been done over the phone! 2) why hasn’t the scan been booked? 3) I feel like I know less now than when I came in.

But I’m me and it’s a smile and I say no that’s great thanks, walking away scratching my head. By the time I’m sat back in the car with El, we are just a little disillusioned I guess and just crack like we do, we have each other and we are great team...back to work we go.

The week follows similar pattern of working to distract, trying to be normal and being filled with worry at all times. Another let comes in the post on the Wednesday and advises that the CT scan has been booked for 4 April 2021...4th of bloody April!! This was really the first time I got emotional as i felt prior to this week despite the delays to getting my appointment on Monday, that I was actually getting somewhere, but the delays and messing around just got me down slightly. So sitting there and reading that my Ct scan wasn’t for another month hit me hard, I was gutted, genuinely gutted, sat there thinking I’ve got another month of worry and the biggest worry for me on top of everything else was crap what if the cancer is spreading in that time, what if in that month alone I get worse and how much longer am I going to be going through this nightmare. I was frustrated, I shed some tears and again had to just accept it and move on.

On the Friday morning I get a call from the nurse I met on the Monday, asking if I had an appointment come through, and I said yeah but it’s so far away, and she said yep I saw that and we’ve moved it to Saturday 13th March..finally a little bit of progress, still over a week away but it’s a start!

Again it’s a small glimmer in a dark confusing time.