Lost all faith

[Brownie_bea]

So today I should have received the news on whether it’s safe to have the Radiotherapy! I had a telephone appointment booked for 3 pm, the letter did say up to a hour before or after the time. 4 pm comes round no call, so I ring the number on the letter and they are closed. I goggled the doctor and hospital to find a phone number. I get through to his sectary, she said he would still be ringing and he had someone helping him today, but would email him. Here I am nearly 7pm no call ! I’m upset, angry and stressed to say the least. I’ve had nothing but bother since I was transferred. I had to ring his secretary a few weeks ago to chase up my MRI, she had me ringing my local hospitals to see if an appointment had been made ! Cause she couldn’t access their system, after I rang 2 different hospitals it was apparent no appointment had been made, rang her back and she said she would remind the doctor. Not being funny but what does she get paid for ? Why do I have to chase up appointments I’m assuming she should have made ? Then on Saturday at the MRI another lady call Ann was taken to the MRI instead of me ..... they only realised when after the put a cannula and got her to the MRI and checked her date of birth and address !

I may seem and sound dramatic but since I’ve been moved from the RVI Newcastle I’ve lost all faith 😢

[Andy_TBTC Volunteer]

Hi - I can only sympathise and completely understand your frustration. We seem to be treated like numbers by people not realising how difficult this is for us.

I’m with Southampton, but get my MRI’s done in Portsmouth as it’s closer, and my long-suffering wife has to phone round both to join the dots at MRI time! The trick appears to be to build a good relationship with the ns’s secretary and butter them up a bit to get them to help😂

[Brownie_bea in reply to Andy_TBTC]

The RVI were amazing so I expected James cook to be the same ! The sectary there wants me to do the job she gets paid for. I’m thinking about making a complaint, 3 things has gone wrong now and I’ve only had 4 appointments with them ! I only wish I wasn’t moved as I’m a mile closer

[Tumo Pioneer]

Please don’t lose faith, it’s all very frustrating and I do understand some of what you’ve been through. Waiting becomes a part of the situation unfortunately, but taking in the wrong patient is unforgivable and you should talk to PALS at the hospital (number should be on their website). You are not being dramatic, this is your life and you need answers. I’m not under the same hospitals as you and I have a great neurosurgeon who I cannot fault. Yes I’m waiting for my results now after my MRI scan 6 weeks ago but I know he would phone me if he needed to. They will arrive soon and then the next round will or will not begin. I trust him completely and he’s never let me down. Yes appointments have been cancelled and changed at short notice but I’ve always had an explanation why. Talk to your neurosurgeon and explain how you feel. Good luck and remember you are in charge of this. Stay positive and stay safe. X

[Brownie_bea in reply to Tumo]

Thank you I trust my surgeon with my life, but since I was referred to the other hospital I’ve had nothing but bother ! And to top it off my sons class was sent home yesterday, the little boy he sits next to has tested positive for Covid. I’m stressed to the max at the minute. I’m bottling everything up I still can’t express my feeling to my husband, I don’t want to chew or worry him 😢

[Tumo Pioneer in reply to Brownie_bea]

Don’t bottle it up, talk to your husband, he might not understand but don’t keep it from him, he will support you in his own way. My first diagnosis was 4 years ago before Covid and I remember how hard it was, and still is, but our nearest and dearest are in it with us so a problem shared us a problem halved. I sometimes couldn’t talk to my husband cause I would cry and not get my words out, so I used to write it down for him to read. He would give his answer which wasn’t always what I wanted to hear but I felt better for him knowing. Stay strong, Covid is a nightmare and the financial side of things have been a nightmare for me, but we are here and we are talking to each other so we aren’t alone. You will do the right thing for you I know. Stay safe x

[Wolfie04]

It’s very easy to become upset and angry at the treatment that you are experiencing. It’s hard enough living with all this aswell as having issues with how you are being treated. That’s horrendous about wrong patient going into MRI at Newcastle. I’m with them myself was there on Wednesday for MRI and so far so good but I could tell you a whole bunch of problems that I have had with my treatment plan at different cities. But can’t go back and think about that crap for obvious reasons. This is you and unfortunately for us we have a perverse way of looking forward to an appointment. We want them but we don’t want them. And most importantly we want to have a plan on an on time service. It’s all we ask for. Can you get the most vocal member of your family added to your contacts with your medical notes so they can ring on your behalf. Also did you get a McMillan nurse set up? This is the time that You need To delegate to your family or McMillans to act on your behalf. It’s all enough to really drive a person mad. You don’t need negativity in your mind or life. The squeaky wheel thing comes in play. Get your family ringing all the people in your care team. You’re name will get remembered because they will be aware that you’re family support team are very much active on your behalf. You cannot do this on your own. It will upset you and then you’ll be given antidepressants because they say you are depressed. You’re depressed because of your illness and subsequent treatment. It is enough to bring on the symptoms of depression. I’ve fallen in to that trap. Easy to prescribe! Get your family with a list of numbers to ring and chase the (wanted to swear then)......... up!

Keep positive and don’t let the system drag you and your recovery down. 🦋

[Brownie_bea in reply to Wolfie04]

Thank you ! I just think I’m

Going mad ! It was James Cook who messed up

The MRI not RVI. RVI have been brilliant, I had my tumour removed up there, I was set to go to the Freeman for the Radiotherapy but, I was a mile close to James Cook, so I had to go there instead

[Wolfie04]

This is really where McMillans step in and take over!

[Wolfie04]

Have you set up your McMillan buddy? You’re very much entitled to their help. Pls don’t keep all this negative stuff inside! Speak to these support groups and vent. They’re waiting for you. 🌻

[Brownie_bea]

yes, I'm on the phone to them now, I've slipped through the net, but they have sorted it now, they have a plan into place x

[Wolfie04 in reply to Brownie_bea]

That’s fantastic I’m sure you must be very relieved. Take all the help they offer you. This is really great news for you luv 🌻

[SJa2020]

Great to see you found some help. And will keep it in mind if faced.

This forum is so helpful like that As you get practical info. Thanks all.

Brownie_bea - Hope you get an answer soon. I’m doing a similar dance with my suspected AN & simultaneous Retinal holes ! Adios all