So I’ve made it to Sunday after a crappy Wednesday curveball.
I had the most gorgeous Friday work morning out in the most beautiful of halls in our region and a cheeky afternoon tea (loved it with JG). I mean I have a cheek to call my job work sometimes! I have finally put feet into boots yesterday (Saturday) and walked 4.5 miles (a very slow 4.5 miles with the parentals and cub) in prep for my 26 mile hike (seriously don’t know who I am kidding at this point). I have also knocked out a soft play session this morning (a Sunday morning!!!) to catch up with a friend and her beautiful boy.
But I have also broke this weekend. I cried and cried on Saturday night. Still crying over the hair loss. Still crying over the general sight of me looking like shit. And I got a bit desperately sad. I haven’t done that in a while but this weekend I think the setbacks this week and cubs comments have caught up with me and I have got a little bit too sad again. I also (possibly irrationally) think I have another few lumps in the boob area, which I am trying to not deal with as my little head might explode! I am also in crazy headspace where I am wondering if this is my new norm. Having a meltdown every few weeks? I’m sure the man cub won’t appreciate that at all but maybe I need a regular outlet?!?! I’m not sure how I do that but I need to look into it.
FURIOUS. AND I MEAN CAPITAL FURIOUS.
After a Receptionist debacle where the man cub went and took a seat so he didn’t yell at anyone on my behalf and I tried to remain calm as a cucumber (honest – I think I’ve found a zen like level with appointments and receptionists by this point!) I got booked in to be seen for the ad hoc Oncologist appointment that is throwing a curveball in my way for this additional appointment as something was wrong with the last CAT scan.
The appointment with the Oncologist pre getting a second CAT scan was a joke. She was a hero to me in early stages of this journey but is now appearing to be a weaker link in this process. Turns out – she hadn’t read my full notes properly. Hadn’t read them at all I’m guessing. Because as I was called in and as we took seats (man cub and I) she asked if I had all my lymph nodes removed in the left armpit (cancer side boob). I sat in outright shock for a few moments, I couldn’t understand what I was being asked. The man cub nudged me back into reality.
As I responded no (totally confused as to why she wouldn’t know this already) she declared that she hadn’t realised as all her Consultants remove all ladies lymph nodes in her main hospital (where I need to get radio); but as I was consulted and had surgery in a different hospital and not advised to do this she hadn’t recognised that this was the case for me. Then she knocked out that there wasn’t any real research that said that they should remove so I should be ok, but that the radio needed to be focussed in more areas than just the boob (because if C ever spread it would go up to my neck and they needed to radio that area but I hadn’t been CAT scanned for that area).
Not gonna lie – complete head fuck. Can’t apologise for the swearing, its the only words I have at this point.
Our heads are blown. Totally blown. I can’t even work out what to think of all of this. I mean, I have already worked out that the girls in the secret FB group all go through slightly different journeys, I just didn’t think that I would have to deal with incompetence across my bloody treatment. Three hospitals, but one oncologist. Surely she should know what the consultants are doing in other hospitals. And should I be worried that ‘her’ consultants in the radio hospital just clear out lymph nodes but my consultant hasn’t? And if theres no research to back this up why are ‘her’ consultants clearing out ladies lymph nodes for fun? Aaaagh, too many questions that I can’t quite deal with and I daresn’t go down google craziness. I will actually lose my shit at that point.
So I’m back in a swimming pool sized cubicle (40mins later – but no stockings in sight this time, I have learned!). Gown on, and waiting to lie flat on my back, boobs out and get more crazy measurements yelled while a laser passes over me. Just great.
All of this debacle and delay because someone didn’t spend 30 seconds more of her time reading my notes. 30 seconds and I would have saved the NHS probably in the region of a few hundred pounds. Maybe thousands to be fair considering the machinery involved. 30 seconds. That is all I have to say. Aaaaaaagh.
Returned to work and calm resumes for my gorgeous colleagues. Might have had a little rant but none of them need to hear my full on madness so I tone it down a level and just do midway rant! It sounds utterly selfish that my biggest issue with all of this is the time delay and that I am worried about my holiday with the family. I’ll get there though.
Then tonight kicks in and I am absolutely ruined.
Asked the man cub what some recycling was in the bathroom (some plastic that I couldn’t work out what it was). The cub pipes up ‘it’s your needle cases mama’. [how has my cub got this wise and savvy and knows this before my addled chemo brain works it out, while never watching me administer said drugs and needle into my stomach every three weeks for five days? Or so I thought].
Tuning into the positive I reassure the cub that I am done with those needles and that I am getting better now. She then declared that she was still sad that ‘you’ve got no hair, no eyelashes and that scar’. Oh my heart broke again. She got a big squish. This is what keeps bringing me back into a sink hole. This is where my sadness keeps reigniting. My cub and all of her innocence should never have to deal with this. Yet she is, and she is bossing it. She is stronger than I ever imagined and she is being a superstar about all forms of this conversation.
Through her, I know I have this. I will keep the strength that is needed to have this from her strength. And we will make this journey end.