@OriginalFloorboards The first part of your post made me well up, as I sat in the hospital, dying in the heat, waiting for my picc line to be flushed & dressing changed. (I got Nurse Big Plaster but she relented & went to fetch the medium plasters, which was a win). The kindness in your reply. Yes I feel the same. Look at all of us here so bruised and battered emotionally. Suffering; and then sometimes not. The cancer rollercoaster.
The waiting and the anxiety and the dark hole pre-appointment: I totally understand. Sometimes the anxiety gets me and drags me down into the darkness & terror & sometimes I can feel ok & I just don't understand how, or how to control it. It feels out of my control. Horses and riding and talking to your daughter and doing normal activities: that sounds so lovely and helpful. Animals are so instinctive and calming I find. Normal activities: Today I went to the beach with daughter & sister & friend & her daughter before the hospital. Then we watched the Disney 1950s Robin Hood & I made dinner & put my baby girl to bed & read her Stick Man. Then I went for a walk on the beach at sunset with my sister & we had a cocktail and marvelled at the gangs of teens taking nos & drinking cheap vodka. It was a scene and a half, and we had a lovely normal day with a bit of hospital thrown in. Everyday is different. Today was good. The past few days have been a black hole of terror. No control, but doing things if you can in my experience helps. So much good advice from posters on this thread about this that I really took on board. No chemo this week so I feel better than I usually would on a Friday, my chemo day.
Have you called Macmillan? They have a free helpline even on weekends; 8am - 8pm; and when I was in the waiting phase like you are I called them in bits on a Saturday or Sunday I think and they were great. I just cried and panicked; they have trained nurses and they talked to me and calmed me down and told me all the help that was available. Don't think you can't call them because you're waiting -- you absolutely can.
(Although I knew it was cancer as told immediately after outpatient procedure to drain fluid off my lungs & a CT scan. I was on my own, it was totally unexpected. All I said was "But I have a 3 year old daughter" & then I sat there in shock staring at the floor until my partner with daughter in tow came to collect me. Worst moment of my life was seeing her come in. I had been dreadfully ill for about a month -- cancer was missed by breast clinic four months previously. I thought I had pneumonia; my partner eventually insisted I go to local emergency walk-in centre - I was wrongly diagnosed with a pulmonary embolism & put in the back of an ambulance & taken to A&E & treated for that before they realised I had litres of fluid in my lungs.
I also second medication. I throw everything at it & hope something sticks. I haven't tried beta blockers but I think I will. I'm back on my meds, I took sertraline at a low dose after PND & a hell on earth surgical menopause. I might up the dose but I'm not super keen on adding more meds to my mix.
Personally, I prefer as and when the darkness strikes, or might strike. A drink. THC. Diazepam. Just not too often as won't work otherwise and don't particularly want a benzo addiction. Sleeping meds if you can't sleep so at least you can find some relief in sleep. Although my nightmares are out of control. If you have a sympathetic GP that's half the battle. Mine is wonderful and will always call if I need anything - referrals or meds.
If you are diagnosed and I very very much hope you're not, that goes without saying - as @Fantasea says they will have a plan for you. I didn't realise, but they call it a cancer pathway. Once you are on a cancer pathway everything is easier. I can call the GP for example & say I'm a cancer patient & need a telephone appointment & she will always call me back.
In the appointment I also second taking notes. or even recording it on your phone, although I can never really bear to listen back. And yes as you think of things over the next few days before the appointment write it down in same place & make sure all questions are answered.
@Fantasea is also absolutely bang on about assertiveness. You have to be your own advocate. If diagnosed, you will be able to contact your consultant's secretary via phone and email - do so and be very assertive yet polite. & you should have a specialist nurse assigned to you & a number you can reach them on. I had so many delays and was fucked around so much I went mental on the phone with my BC nurse many times. Shouting & crying & demanding that she better not call again unless it was with a date for appointment with oncologist. She said a lot of useless fluff like "we are working behind the scenes to try to get you an appointment" & it was all weird corporate bollocks & sent me mad.
It was an incredibly stressful time & I so wish I had more helpful things to say to you other than - well this is my experience and advice. But there you go. I hope some of that might be helpful.
@JellyBellyNelly I am so sorry you had such an awful time.