waiting & feeling abandoned (with update!)

UPDATE

original post is under this…

first - thanks to all who responded  much love to all xxxx

If you don’t want to read all / I’m in remission but may need preventative radiotherapy (waiting on that decision & am totally fine with that). 

Happy but upset with treatment following scan and today’s appointment 

**** UPDATE ****

PET CT was on Tues (21st sept) & i hadn’t heard anything by sunday (26th sept - original post) & here’s the update (bit long sorry!)

I called the specialist nurse team on the monday (27th sept) and told my team meets on tuesdays. She checked the list and saw I wasn’t in it for discussion the next day. Told to leave it with her and she’ll look into it.

she rang back in 10mins and said all good - results discussion tomorrow and they’ll be in touch within the week

Received appointment card in post the next day (28th sept)

= confused me

I left it as I figured I could ask them about this appointment when they called re my results.

NO CONTACT FROM THEM AGAIN

I called on that monday (4th oct ) but no answer- left a voicemail asking for someone to contact me,

NO CONTACT FROM THEM AGAIN (AGAIN!)

At this point my mental state is ridiculous so I decided, I have an appointment so i’m just going to leave it and wait till then.

I decided to call on the friday before (15th oct) as i wanted to check my mum could come with as coronavirus rules are sometimes in place.

All good - mum can come with thank goodness.

I asked if i would need a blood test (just so i could be sure to drink plenty of water in preparation - dodgy veins! ha ha). Yes I would need one and to come in an hour early so we can get in done and have results ready at appointment time. She would leave a blood card?? at reception for me.

I asked if she had my results but alas she couldn’t tell me anything.

TODAY - 18th oct appointment day!

got there an hour early but receptionist knew nothing of any blood card left.

Waited about 10mins and was called to be weighed, it hen waited the rest of the hour until my appointment with no calls for blood taking.

Went into appointment with mum and doc asked “how are you?”

Anxious for results says I !!

Doc responds very brisk Well you’re ok so I’ll check you over and you can be on your way! Not paraphrasing here… that’s how the info was given to me.

I had to get him to clarify that the chemo worked etc 

It did and i’m in remission- yay!

He did a quick physical check and told me because the lump (that started it all) was large to begin with he needs to check with radiology that they don’t want preventative radiotherapy doing, I’ll know this week if that’s the case… I am confused (& honestly p*seed off) as to why that discussion hasn’t already taken place though!

I had questions! (lots!) but he didn’t have time for me. 

Me & mum were ushered out of the room & told he’ll be in touch within the week and then if no radiotherapy needed then I’ll get an appointment in 3months as part of ongoing follow ups.

He was already on the phone about another patient before we left the room.

I spent a total of 4minutes with the doctor.

I know docs are busy but there wasn’t even a nurse with us who could then answer our questions afterwards - we were just left to walk out with no information. 

I didn’t even ring a bell (not sure I would get to anyway as I don’t think I have the right cancer for the bell ringing).

I’ve spent most of this afternoon sobbing. Partly in relief knowing chemo worked but mostly bed cause there was no aftercare at all.

I still feel abandoned & lost (but so so grateful i have this community to help).

Anyway,

thanks again to all for listening / reading my little rant and for all your lovely messages and advice.

Hope everyone is doing well on their journeys xx

**** ORIGINAL POST BELOW ****

Hi all

this may seem like a pity party type of post but i don’t know where else to turn. 

I’m 39 & just completed 6 rounds of chemo (r-chop). 

I had my PET-CT on Tuesday (21st) and was told they would send results to my consultant that day and I should hear within 48hrs but I have heard nothing. Today is sunday (26th)

I just want to know if treatment worked or if I need more. I’m just in limbo again.

I know there is so much pressure on the nhs right now and I don’t want to be a bother but I feel like I’ve just been forgotten a bit. 

I don’t even know who to call to chase for results as I don’t have a number for my consultant and the chemo ward basically told me after my last treatment to not call them now as they have done with me.

I’ve felt so alone throughout this. I live with my folks who have been fab but I don’t get a moment in the house alone so calling anyone for a chat is out of the question (plus I struggle with my hearing at times so it’s tough on the phone). 

My treatment left me shattered so travelling 1hr to the hospital to see a nurse / doctor / mcmilllan staff to talk was also out of the question. 

Right from the beginning I have had no real support it feels

From diagnosis to treatment I felt I was rushed through - I never even got a complete diagnosis (what stage I had - i never thought to ask to be fair because i was still just getting used to “having cancer”) and I felt that I was a bother when asking questions. Again, the pressure on the nurses etc means they haven’t had time to talk really… they have all been lovely and kind (especially putting up with my constant tears!) . This post is in no way meant to slate anyone - I know they are doing all they can.

Nobody even explained what happens during a chemo sessions or what i should wear / bring  - I didn’t know If have to take 21 pills! and i struggle with pills but if if known i would have been mentally prepared  

hi 

Im so sorry for just whining here and being all “woe is me”. People have it far worse I know. I’m just feeling lost and sad and tired

These boards have been great as I’ve been able to see people going through tempe same as me so I haven’t felt alone as much. Thank you to all for sharing stories xx