Confusion reigns

Dear maz, I am so sorry you are being made to jump through all these hoops on top of coping with your illness. I have been through similar experiences during my own treatment with the hospital administrative system which I find dysfunctional and siloed, and it has caused me more anxiety than my condition as hard as that might be to believe. I don’t have any solutions other than question anything that you think is wrong or unfair and don’t apologise for sticking up for yourself. I recently extracted an apology in writing out of my local hospital for a catalogue of failures and even received a personal apology from the director of the hospital. My only intention was to make things for patients who come along after me better and I hope I did that. So don’t feel you are alone in finding things frustrating its an experience shared by many of us. So I’m sending you all my best wishes and hope your treatment can be sorted out and you can get some stability.

best wishes 

jane

Thanks Jayne did good to get it off my chest. It is just so annoying when you are being told that you are on meds when you most definitely are not. At times you wonder if you have either slipped into a parallel universe or just gone mad. 

Sure it will get sorted eventually 

Hi Maz, sometimes when you ring the hospital the person on the other end beggars belief, I rang my onco secretary yesterday just to try and find out when i would be getting a follow up app after my PET scan and biopsy as i need to try and plan for the rest of this year. She said in a rather snotty tone " these test results are not instant you know" bloody hell no shit Sherlock, i think i am aware of this after nearly six years lol.  I actually chuckled and told her ok then hung up. Unbeleivable sometimes xxx Lynn 2.

Yes my oncologist has 2 secretaries and one is so good I have to stop myself from always choosing to contact her and not the other one who simply just ignores contact unless you manage to speak to her. The Breast Care nurses team here I have found to be the most disagreeable they never show as my compassion and if I hear the words " we are not a emergency service " again I will scream. 

But my imaginary chemo regime seems to have provoked a reaction somewhere as my Dec appointment is now tomorrow. Let's see what comes of that. 

Good luck Maz. Hope everyone pulls their finger out and you get the correct info & treatment.

Frankly "we" don't need any more c*** - life has already dealt us that.

Take care

WB xx

Hi Maz, Well it's no wonder you needed a rant! If I've read this correctly does this mean your oncologist THOUGHT he had you on treatment you've NOT actually on! No wonder your appointment has been brought forward, I hope he admits the mistake and gets everything sorted out then and there! Good luck!

Regarding the letters, how do they know for sure that it's not the first letter that's wrong instead of the second one? I'd be questioning that for sure. Sounds like the left hand doesn't know what the right hand is doing, why should you pay for their mistakes!!

As far as your oncologist having two secretaries, it obviously doesn't work! I do think, when possible, you should only contact the good one!

Please let us know how your appointment goes and don't let them off the hook until everything is sorted to your satisfaction. You are the one that matters here, don't be afraid of giving them a piece of your mind. I guarantee you will feel better after it! 

Hi Maz

I've so much sympathy for you, you just don't need all this hassle when you're so ill. 

I've had issues with ESA before and I wasn't getting anywhere until I contacted a very sympathetic MLA (politician who was running our government in Northern Ireland-when they were working!). 

I have to say that HMRC in my case were wonderful, but the Esa-one guy in particular, was so rude. Once when I unluckily had him on the end of the phone he said that he could see I had an MLA on the case and I was to tell him he was WASTING HIS TIME. Well the MLA concerned, with the connections he had in the helpful HMRC, managed to turn the ESA's decision on its head. So much for the rude ESA bloke! 

I'd therefore advise you to ask an MP or otherwise to fight your corner and take some of the pressure off you. Also, contact the Citizens' Advice Bureau for help, they were also great for me on more than one occasion.

I haven't any experience in the field of chemo that you're going through so I'm afraid I can't help there, but I've read some replies with great words of wisdom. Good luck Maz, I hope you get success.

Tvman xx

Maz

we all try not to upset anyone,but in your position you are not trying to make friends with the people in authority but trying to get them to do their job properly.you can be very firm but sometimes even that doesn’t work .  I really don t encourage rudeness but perhaps someone else can phone for you ,you can then apologise if they are rude ,and it won t be you being unpleasant 

ridiculous state of affairs isn’t it ?

good luck

positive thoughts 

xxxx

janet

Well dear friends I have just returned from my oncology appointment. As expected he had no idea why I was there but was glad I looked better than last week. 

I explained what had happened and he was unable to understand why it had happened especially about it being my third cycle. 

However it does seem that this is the route he is now favouring once I am well enough. I pointed out that this had not been mentioned to me and that I had already had a failed attempt on one of the drugs. I reminded him that the information he had given me in August was actually on Paclitaxil and a port. He then said this was not now an option due to it being mixed with alcohol and it cannot be mixed with anything else. 

I asked him about my scan results and it was like getting blood from a stone but the Mets in my lungs I think are stable. I asked directly about the liver Mets as I have been experiencing discomfort since coming off the Ribociclib. He confirmed these were growing but then said they always had. Thankfully I was able to remind him that since going onto Ribociclib my liver and bone Mets had been stable at the first scan then reduced at the second and he himself had announced that the Ribociclib was working. 

He conceded that I was in fact right. I was now quite fired up and said that it was clear that the only drug to have worked was the Ribociclib on the one third dose and I feel it is false economy to keep shoving drugs at me that although cheaper do not work and result in hospital stays which in all reduces my quality and probably quanity of life. 

He said he would write a funding request letter but did not have much hope it would be successful. He says the trust will not fund both hormone and chemo treatment and as one of my cancers will not respond to the hormone treatment then he has to go down the chemo route for the umpteenth time. The none responsive cancer has now been removed and no further growth has developed on the scan of my lungs and this has been with no medication. 

 I am due to see him again in 3 weeks but I am feeling very annoyed and want to tell them to stick the chemo drugs. 

He also suggested I go to my doctor as my recent x-ray suggests I may have developed asthma. I wonder if they have an inhaler that will reduce liver Mets at the same time. 

Oh Maz, I'm still trying to take it all in! I can only imagine how you must be feeling! This is just not good enough from your oncologist, I think he has let you down badly! If you decide to go to your GP, I would tell him everything and ask if he thinks a second opinion would help! I'm assuming you at least have a good, understanding GP!!! Oh I feel so bad for you, I hope you are going to report this!