Just a rant/offloading - no need to read or reply if you don't want to!

Oh no - what a nightmare.. What an awful situation this all is. I don't understand why people in our situation can't be given the choice of having treatment and risking coviid.

It wouldn't be a logistical nightmare for them to give someone wanting treatment a test and telling them to isolate before the results come  back. That minimises any chance of us  having covid and passing it on in the hospital, surely. 

They could have a dedicated, frequently deep-cleaned portakabin for administering treatment to those who don't want to risk waiting and a one in, one out system or something. Sure, it would be more work for them and would take longer to treat people but it's better than the alternative, surely?

I'm thinking of ringing the onc's secretary and asking why I can't be posted the form to sign and then get the injections from my GP or something. They seem to have the attitude that because the Tamoxifen is working and shrinking the mets, there's no rush for the Denusomab. My wanting to get rid of the various bone pains a little more quickly doesn't seem to matter. 

Well, I have received the reports I asked for - the letters to my GP, the ct reports and the ct images themselves. In one way it's made me angrier than before because five of the affected sites are clearly listed in one report but the oncologist claimed he didn't know where they were.

In another way, it's put my mind at ease, seeing for myself the extent of the mets. It took quite some doing, staring at images of normal liver CT scans on google and then comparing them to mine, but I did it and can see for myself that the three mets there have more than halved, which I'm chuffed to bits about. 

I haven't yet investigated normal bone images VS my bone images - this is a job for this weekend. 

The reports also mention a couple of other things - non-cancer related - that they couldn't be bothered to tell me about but which explains quite a few recent niggling little things so my mind is at ease knowing these symptoms are not related to cancer.  

Well I am pleased that you achieved what you set your mind to however in my opinion you should not of had to do any of this work yourself your consultant should have given you this information especially as you say about five of the effected sites are clearly listed in one of the reports!!!! how the hell could that be missed I am lost for words myself really pleased for you that the three mets have more than halved and the niggles that you mentioned before are not cancer related xxx

I'm delighted that you finally received the reports & that your liver mets have shrunk, , though Popgate is absolutely right - you should not have had to work so hard for the information. 

Good luck with your examination of the bone images.

Hi 

Well done you for preserving though I think it's disgraceful that you have had to resort to a DIY report. Your oncologist didn't know that not one or two but five affected sites were there. Shocking! That's his job to know that and if he is so incompetent......

Lovely to hear that someone is chuffed to bits with their mets have more than halved. Good luck for this weekend MooCoo although you really shouldn't have to do it. Your mind could have been at ease much earlier.

Take care and stay safe Moo Coo

Tvman xx

I can totally understand your distress. When I was diagnosed with mets a couple of months ago I had to get a lung biopsy to confirm. I went in for the biopsy and was in the anaesthetic room waiting to go in when they came and told me the machine for the endoscopic procedure had broken down so they couldn't do it. Another appointment was arranged a few days later for them to take the biopsy by going in through my back. Then I had to chase up multiple times to get someone to tell me the result. They seemed to think I'd be fine waiting another week for an appointment with my oncologist even though there had already been a delay caused by the first cancelled biopsy, and the result was back within three days. I was absolutely losing my mind waiting and wondering if I was being unreasonable by making a nuisance. Once I managed to get the result via the oncologist on call I was fine. It was what I expected but I just needed to know and not be left in limbo. 

I like a good rant. Clears the mind. 
here’s mine. 

4 weeks ago I could walk ok and felt okish. Now I can’t. My tumour in brain is doing god knows and the swelling is in overdrive. Steroids not working. I struggle to do anything. The hospice have hadquipment ordered to help and so now I sleep downstairs  this is not living! I keep concentrating on Christmas for my children and hubby. This time last year I was normal. I hate this. 

Hi there don't apologise for a rant that's what we are here for you will find support on here from all of us whenever you need to have a rant I know it's hard but focus on any positive thoughts or events coming up like you have mentioned Christmas with your children and hubby it really does help having a goal to focus on you really have to dig deep to get you out of a meltdown situation I should know keep fighting with determination don't give in to it we are all here for you huge hugs and love xxxx

Just another rant/update. Still not managed to get started on the Denusomab. The onc. wanted me to have a dental checkup before I start the injections - well, I've managed to have two of those since this all began and still no injections. 

The onc's last phone call to me finished with the agreement that the next appointment would be a face-to-face and I can sign the consent form and get cracking. So they made an appointment for a CT scan on the 4th of December and another for the results on the 22nd of Jan. I quickly phoned to delay the CT scan - no way was I waiting that long and over Christmas for the results. The CT woman was most snotty and said she would try to get "permission" for me to delay the scan but it might be too late for it to be reported on in time for the appointment. When I told her the follow up appointment was six weeks later, she gave in and "allowed" me to delay it to the 4th of Jan. 

So, since then, I've had the usual worry about the results plus I keep running through everything I intend to say to him at this face to face appointment. Yesterday I discovered.....it's NOT a face to face appointment. It's a phone appointment so obviously he has no intention of starting the Denusomab any time soon.

I am so fed up - the pain from my pelvis and hip is preventing me from walking any distance and just lately, even stepping into the bath is a mammoth task. I struggle to put my right sock/shoe on or get my leg into undies/trousers on the right side.  The pain in the other bones isn't so bad except in bed when I'm trying to find a comfortable position to lie on. Bone met in third vertebrae so can't lie on back for long. Bone met in right hip and collarbone and arm so can't lie on right side for long. "Hot spots" around my scar so can't lie on my front at all. In collarbone on left and in left armpit so I can't lie on my left at all. 

This has been going on for what - six months now with no end in sight. It's so depressing and infuriating - I want to make the most of what time I have and yet they just don't think that relieving pain is a priority. 

I think he is going to get a mouthful on Friday - it will be two years to the day since I was diagnosed and four years since I began trying to get help for the pain. I think I've earned a break from it.

Hello MooCoo. Thats a fair old story and an unhappy one. My sympathy won't help unfortunately, I just hope you get some sort of a result on Friday.

Telephone appointments are pretty well the norm now, no value to anyone really but that's how they work now.

Good luck.