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Frustrated now.......

10 REPLIES 10
poemsgalore
Member

Re: Frustrated now.......

well done jayne, we have to have a rant now and then. Sadly, it's sometimes at the good guys, the not so good ones don't take any notice.
Jayne_m
Member

Re: Frustrated now.......

My rant at the BCN on Monday paid off... She called today to say that instead of having to wait 8 weeks to get my port removed, onc has agreed to 3 weeks after last chemo so it is coming out on 31st - can't wait!!!!!

Did feel bad getting stroppy with her though as she has been brilliant throughout, she just got me at a bad moment

x
poemsgalore
Member

Re: Frustrated now.......

Hi Millymolly, three sentinals removed, only one had cancer in it. It was pretty much up to me whether I wanted the chemo or not, although they did say I would benefit from it. So I'm going for it!! Oddly enough, I'm more scared of rads than chemo - must be bonkers!!!
dragonbunny
Member

Re: Frustrated now.......

Hi

Am in similar position. Had imaging just before Xmas and after New Year saw hspt for review prior to last chemo on 10th Jan. The nurse loked at the PC records and said no dates for me yet. Bit frustrated as well. If I don't get letter by the end of this week I will follow it up. It adds to uncertainty, planning ahead for work etc. I was orginally told treatment happens 3-4 weeks after last chemo so guess still within that time scale though info would be good.
x
Jayne_m
Member

Re: Frustrated now.......

Thanks nannabarb, that makes sense, I hadn't thought of that. I will be at the new Cancer Centre in Bracknell so not too far from you.

Jayne x
nannabarb
Member

Re: Frustrated now.......

I do understand how frustrated you are with not actually having your appointments, but when you go for your imaging appointment you will probably get to 'plan' your appointments with them (This is what happens at St Lukes in Guildford). Because they 'plan' in person with patients, it means you can work round other appointments, work schedules, transport problems actually keeping YOU in control, and as usually you are palnning at least 15 consecutive days of treatment, this is why they cant just send them to you..
Hope this info helps put up with the horrible waiting xxxx
Jayne_m
Member

Re: Frustrated now.......

Thanks everyone, I have now had a call from rads saying my imaging appointment should be at the end of next week and they will call me at some point next week to confirm. I appreciate the call but why can't they just confirm the appointment - they also said that my rads will start at some point within 3 weeks of imaging, again, why cant they just tell me. I am trying to work when I can and it is so hard when I have no idea what is happening and when.

I have been lucky through chemo with private medical through work and although I am still 'private' the rads clinic is NHS so I guess I have been spoiled and am now learning how the real world have to deal with this.

Sometimes I feel that as those making the appointments have not been on our side of the fence, they dont really understand how much we need to be in control of what we can be when faced with an illness we have no real control over.

xxx
millymolly_m
Member

Re: Frustrated now.......

Hi PG, Good luck with the chemo dates. How were the nodes?
poemsgalore
Member

Re: Frustrated now.......

hi jayne

How we all hate waiting and not knowing when things are going to happen. I'm in a similar situation re chemo. I know these things take time to arrange, but it is sooooo frustrating. On slowness, I just received letter this morning confirming discussion with surgeon and bcn, where it was decided that I would see oncologist. Already seen onco, but she will receive a copy of said letter. Obviously she didn't get it before me, so they must actually TALK to each other now and then.
You keep having a rant, we all need to now and then.
pg xx
millymolly_m
Member

Re: Frustrated now.......

You rant away girl. I'm with you in limbo. I ranted at a district nurse today then felt really bad. She only said how well I was doing and how well I looked.
After my rant I did get a call from clinic to say there was a slot for me at ultra sound tomorrow. Coincidence or did the DN report a raving lunatic needed some help?
M x
Jayne_m
Member

Frustrated now.......

Hi

I had my last chemo last Tuesday and am now getting so frustrated as I havent got any dates for rads yet, getting mixed messages about when I can have my port out and having felt in control since dx, now feel in limbo!

I know it will all happen and I have spoken to Radiotheraphy unit this morning and someone will call me in due course with dates.

Just needed a rant - really hate being in limbo and just want to get through this as quickly as possible -grrrr!

Jayne x