CT Scan Date

hi jan have you tried contacting the oncologist secretary? ive got to know mine so well over 5 years we even exchange xmas cards! or the csn. if phoning fails email? my dil who had colon cancer said the prep for colonoscopy was worse than the procedure. she didnt remember anything. could you ask if you could have different prep if last one made you so sick or do you think it was just nerves..honestly i feel for you i really do as if you havent had enough cancer already! kate x

Hi Ms Muggle. I'm sorry to read you're going through anxious times again.

We've just this minute put the phone down from a Clinician's telephone consultation for my hubby's forthcoming colonoscopy. He's just been referred on a 2ww pathway for bowel cancer. He went through lots of questions and said he's going to arrange a CT scan as well as a colonoscopy and gastroscopy. He confirmed he was just putting through the 2 week request as we ended the conversation so it does sound as if the clinician does the requisition.

Just be persistent and keep calling. I confess my CNS seems to be able to move mountains for me but they're not all the same!

Sending hugs, Barb x

Hi Kate, Attempting to find the oncologist secretary is a job in and of itself. The number I have is not for the secretary directly but, rather,  the gynecology clinic nurses. They pass along messages (I suppose) to her. Never has she responded to me. The secretary of the doctor who would do the colonoscopy sent her  a letter suggesting I was not being compliant. You know, Kate, I honestly wonder if it weren't a combination of the two ... anxiety and actually being sick. I'm not certain of the cause and effect. Really, I'm just fed up and can't help consider calling it a day.

Thank you so much for caring.  Jan xx

Hi Barb, 

No, they really aren't all the same!!! I'd love to trade!

I think the clinician does the requisition. That was my understanding. However, as you can see, despite a letter to her, she's done nothing.

I am happy, though, that your hubby is getting the attention he needs. At least, it sounds as if you have confidence in his care.

Tomorrow, being the beginning of a new week, I'll give this 'oncologist' another go. Otherwise. I'll really have to look for a referral elsewhere. This is just terrible.

Thank you again.

Hugs,

Jan xx

Hi Ms Muggle, i am sorry to hear that there doesn’t seem to be great communication from your oncologist. I have a phone number but that’s for the clinical nurse specialist’s. So I will share the experience i am having, because it’s clear tome it’s happening to many people with different issues.My first CNS was superb really couldn’t be more helpful, and got everything sorted straight away, I found with the others its a little hit and miss and there are times I feel I haven’t got the back up I need. It doesn’t help that my oncologist is in another health authority and I find they can view my scans but not anything else. I had hoped they could help me early this year when I was starting  having issues again with my renal system and although I kept saying to my Gp to refer me back to urologist it wasn’t happening I kept being told well its not an uti which i had expected, i was concerned that it would complicate signs of problems gynae wise and had hoped they would put pressure on my Gp. All I got was keep telling your Gp,I have been doing this for months. Its not helpful that I have a heart rate issue which we think is related to the renal problem or its neurological I even tried getting help over that to no avail, at least I got my spinal mri which only happened because i had major pain surging in my body again thinking its a uti because the pain was so bad I couldn’t pass water yet the surging pain seemed to be running up and down my nerves I couldn’t understand and the hospital just treated me with pain relief and said its not an infection and go home but didn’t help to find the cause, it was me finally speaking to another Gp who is new to the practice, but at the same surgery to ultimately start the ball rolling to organise an MRI to check my spine, Just to rule out possible nerve compression. In late August/early September  i had started to have a major bleed and having on and off bleeding I finally managed to see one-of the gynaecologist -oncologist from my team and she got on to urologist that they need to see me, although i am awaiting a CT scan after my camera to look inside the bladder it’s highlighted that there is a problem around my kidney. But what is yet to be determined all I know is that from the camera you could see the kidney was rather lumpy bumpy and pressing into the bladder wall. My head is all over the place about it and I keep thinking what if it is really bad news could it have been prevented if my CNS and Gp had listened straight away to my concerns. Its just like with yourself your not able to communicate nor do they seem to listen to your concerns.

It seems so unfair that they haven’t listened to your concerns other then by the sounds of it that you are being uncooperative as they put it, it’s vital to have a good line of communication between you and the oncologist, it doesn’t help you have clearly got one where either themselves or the team around them aren’t easy to get hold of and had they been you could of requested the scan be sooner because of the concerns you have over the colonoscopy and what it may reveal.  I really hope that when you see the oncologist today that they fully listen and do everything to ease your concerns. Fingers crossed for you that it happens.

sending gentle bear hugs  

Ms Muggle. Hi Jan. I've just got off the phone from my CNS. I was supposed to have my 3 monthly check-up round about 25th September & no appt. letter so I chased them up. Got an appointment for 16th November so 7 weeks later than should have been.

It seems everything is backing up from seeing new patients to timely reviews of just operated patients and ongoing quarterly check-ups. There's not enough staff or clinics available. That's in my health trust so likely to be UK wide.

Big hugs, Barb x

I would contact PALS at the hospital and see if they would mediate on your behalf. 

Hi Jan (Ms Muggle I haven’t anything helpful to add. I know how worrying all of this is for you and  I just wanted to send you lots of good wishes and a gentle Fairycake hug. xx

Hi GBear,

It is really unfair not to listen to a patient's concerns. I, like you, would wonder what may have been different if they had listened to your concerns. You may well not be facing the myriad difficulties you're experiencing.

Having it suggested that I was being a non compliant patient was/is so insulting and dangerous. It makes me wonder whether they'll take anything I say with any degree of seriousness. If anything, I'm quite the opposite.

Since the CT scan isn't until November 1st, I won't even be speaking to the oncologist until a few days later. She doesn't even pass on the results herself but, rather, has the Genecology nurse inform me and forward me my chart electronically. Thankfully, I can decipher it and ask the nurse any questions. It's a total mess. Covid is being blamed, however, I simply won't accept that excuse.

Thinking about it, I may well ask my GP to refer me to a different oncologist. First, I guess I do my research to see just whom I might see. My preference is one at a major teaching hospital. Engaging in "do it yourself" medicine upsets and distresses me, however, my options are feeling pretty limited right now.

Aaah, thank you for the gentle bear hugs,

big hug backacha,

Ms. Muggles  Jan

I'm so glad your husband is having his tests arranged, Barb. I think it is the clinician who makes the request and forwards a requisition.

Persistence seems to be the only way I'm going to get any satisfaction. To be honest, though, I just feel like throwing my hands up in the air and giving up!

big hugs for luck,

Ms Muggle (Jan)