Sorry - I just need to offload!
Two weeks ago my chemo was stopped (had been having it for 4 months and then advised it was no longer effective - lumps in neck were starting to grow again). Onc referred me for radiotherapy - diffrent hospital/different PCT. I was told I would hear from them within 2 weeks. I chased my appt up today, only to be told they had never received my referral or notes etc!!!
I’m really annoyed that in this day and age they still rely on the post and fax machines - why couldn’t they email my referral. Anyhow, having been annoyed I’m now stressing out. If I have to wait another 2 weeks or more before treatment starts, might things be growing bigger or spreading futher. (ps I’ve never had surgery - went straight to chemo)
I’ve gone from positive to wobbly all in one day
Am I just worrying unduly
Linda
x
Oh Linda, that is awfull!! Im not suprised you are angry nd stressed. How far away is the hospital? I would be tempted to be there at 9am tomorrow morning and demand (in a positive but direct way!!) that something is done. You are in a horrid place anyway nd this is just not fair!! If you are not up to it, do you have anyone who could help. Even your gp or local hospice??
Lots of hugs,
Sadie Xx Xx
Thanks Sadie - I’ve decided I’m giving them until Monday and then I’ll be on the phone or stood in front of them!!
I know these things happen but it just makes you feel so vunerable.
The hospital I’ve attended for my chemo was brilliant - its just a pity there are so few hospitals that do rads.
Anyhow, thanks for your reply. I hope you’re still doing Okon the taxol I’ll catch up on the triple neg link later - I love listening to your family exploits.
Off to work today - started phased return 2 weeks ago - just doing 2 days a week - everyone thinks I’m mad, but I’m enjoying a bit of non related cancer stress!!!
Linda
x
Hi
I understand how angry you are. After my surgery the referral to radiotherapy never happened when expected; I chased with my BCN who came back within the hour to say I had been put on the wrong pile! This was within the same PCT. It happens; anyway for me they “dragged” an extra registrar in for me to see to discuss position; then it went pear-shaped again.
Ended up with me formally complaining in writing; did the trick tho’ I had phone call from Onc at home in evening to explain/apologise breakdown in communication etc etc. I then had my plannimg & treatment very quickly after that. If you write they have to respond; I would also let your GP know these issues; mine also chased this up. My Onc ended up with a writen complaint/ my GP & my BCN all trying to sort it. Probably pushed me up for treatment to get me off the phone (in the end it was nearly 4 months after surgery that I started my rads). In your case I feel you should be top of the list.
Keep pushing; my BC was non-invasive DCIS so not the on-going worry & stress you must be dealing with; you don’t need this on top; & you shouldn’t have to chase this yourself.
My experience is to make a complete pest of yourself; difficult at times; contact your BCN daily; how about going back to your Oncologist they should be really chasing this. It may be a different PCT but they should all be working together to provide you with the best treatment they can possibly do.
It makes me so angry that in this Hi-tech age paperwork is still so poor.
Lots of hugs & let us know how you got on.
Regards
Lynne
Morning Linda, Hope you are ok. Been thinking about you lots. Im sure waiting till monday would be fine, i just think a quick ‘checking they have received it and are able to process it’ phone call today would work well?? You may then know it IS in hand over the weekend nd be able to not worry so much.
I formally complained about my chemo (arriving at 9am, still no chemo but 1pm was standard!!). They have addressed the issue!! And this was not as important as your issue!!! We are just too nice at times nd im learning to be a pest!!! A nice pest though, i dont get cross, just persistant!!
Hugs,
Sadie Xx Xx
Ps Both children fast asleep so nothing to report!!! But i do like it when they are both here!! I love school hols, nd week off chemo, so feel good!!! Take care. S Xx
Hi Sadie and Lynne
Sorry I never saw your responses to the above (I think my mind wanders off and sometimes never returns!!)
The good news is I am now sorted with my planning appt- Monday 15th.
I didn’t have to write in the end, just shed tears down the phone to the Radiotherapy dept and also blubbered infront of my Onc. I think they finally got the message that I was stressed.
Isn’t it funny - at work I’m probably one of the most assertive people going, at home I turn into some ultra polite shrinking violet.
Lynne - your story sounds quite horrific - it really shouldn’t happen, but I’m glad you finally got sorted. I hope from what you’ve said that your treatment is all over - how are you doing?
Sadie - I know we keep talking on other threads (thats when I can find them!) Are you still the taxol guru? You have done so well to keep going on this weekly regime. I will find the triple neg thread and catch up with you and your family going ons. Bye bye for now
Hi linda, once you find a thread click on the words ‘save discussion to profile’ or something like that. Look too right, white writing in pink. Then you can get at it quickly. When you sign in, you can click on ‘saved discussions’ nd you dont have to hunt!!
Still on taxol!! Just had number 16! Scans 12th sept. Extra week off this week as off to france today. Mondays se still here so not great, flight should be fun!!! Glad you have a step forward planned nd good luck for the meeting!!
Hi
Good to hear your planning is imminent; Yep my rads took place in March so all done & dusted. Have appt with Onc on 19th. I’ve a couple of issues to talk about as I’ve developed a stiff shoulder & underarm swelling 3 months after rads. Apparently it’s quite common; so hopefully she or registrar can let me know what I can do about this.
Also just before period my zapped boob gets very irritated & normal painkillers just don’t ease it. I know it’s my age/menopause but still so uncomfortable. Hope they can let me have some stronger painkillers to ease it on the days it’s bad.
Apart from that all is great; scar already fading really well; going to the gym 3 times a week & swim on Saturdays (stiff shoulder permitting). On gym days not so stiff so exercises on non-gym days should sort it. Oh & dropped a dress size now back to a 10. Haven’t been that since I left school over 30 years ago.
Few aches & pains but life is pretty good at present.
take care; slap on the cream get your skin really healthy before rads start; keep well hydrated. They’ll tell you all this at your planning. Found crop tops & vests with built in support the most comfy during & after rads.
Lynne