Feeling v isolated

[Cceeeee]

Hi, how lovely to find this group. I was diagnosed in early Feb 17, and because I'm not undergoing chemo or rad, we've been pretty much left to get on with it. Obviously I appreciate that the NHS is cash strapped, and shouldn't waste resources, but so far our experience has been callous, inhuman, and unfeeling grandstanding. And all this from my beloved NHS. im eager to find out how to create my 'new normal'..did any of you have a similar experience?

[Jennymary]

Where abouts in your body is your cancer, are you scheduled for surgery, with my breast cancer 3 1/2 yrs ago i didn't have chemo, I'm also on a breast cancer HU forum, and some people have posted they had surgery but no chemo or radiotherapy, the advice I'd give you is to contact your specialist nurse and/or GP who may be able to give you further advice/guidance, good luck

[Suey35]

Hi Cceeeee.

I have to say that my experience as a family member of someone suffering from Cancer has been the same..unfeeling and inhuman. My Dad was left weeks and weeks between apointments, sent to 3 different hospitals, one 90 miles away for an operation.

My mum has had to have a CT scan as they tried to do an endoscopy and couldn't. That was 15 days ago. She hasn't heard anything since then and we have all been worried sick about the result. She has a follow up on June 14th!

I had to ring the Consultants secretary in the end and explain that we need something be it good or bad and she shouldn't wait 12 weeks not knowing!

I think they forget we aren't used to this they are, they deal with it everyday but it's not their lives is it?

I really wish you well and if you don't feel you are getting support and answers from the hospital make as much noise as you can!! You deserve more than that.

Xx

[Slyjo]

Hi. You don't say whether not having rad or chemo is your choice?

I have decided not to go down the chemo route again (had it last year and it did nothing except make me feel really ill). I am now stage 4 (despite the chemo) and asked for regular ultrasounds to keep me informed, but they've said no to ultrasound but I can have a CT (!) A CT is more dangerous (radiation levels), more expensive, and more time consuming than an ultrasound, it doesn't make sense. So I'm going to push for ultrasound at my next appt. I haven't actually told my oncologist I've decided not to have chemo, but that I am just putting it off at present. I don't know what reaction I'll get when I tell her my decision. Wish me luck.

In the meantime, speak up. Don't accept being made to feel this way. I know it's hard, but it's your life! It's now or never. Be brave and I wish you all the luck and best wishes in the world. Take care.

[capetownval]

After a really rough time and 3 surgeries , and chemo that had no effect , I was lucky enough to get a wonderful oncologist. I was sent for a PET scan which showed up the cancer.

If I had known that was what was needed I would have paid myself earlier. It would have saved so much pain . Ask about it

[bobbyk72]

I think that I am lucky to have my treatment at Weston Park Hospital in Sheffield where I think that I am getting the best care from the best nurses and doctors in theUK.

[TrevorJobling in reply to bobbyk72]

The NHS is great institution and I am so pleased you received great care. We all have bad days at work and it can be this solitary meeting with a doctor, nurse etc who is having this bad day that may spoil your entire experience during treatment. I had anal cancer with radio/chemo. On completion I was anxious to get my final result. I waited 2 weeks for the appointment with my kids and wife all desperate. The day before the appointment I was asked if the oncologist could cancel a week due to overbooking, I insisted on the appointment and was met with a cold individual who gave me 5 minutes and not much else, this was my doctors bad day and did spoil what should of been a celebration.

[Loulou669]

When my treatment finished I did feel very isolated and felt the hospital just sort of dumped you , I wasn't given much support but I went to find support for myself in a support clinic called 'Maggies', they help with the emotional feelings that you have. I found this helped not only myself but my mum who was also distraught. Do you have any support clinics near you that you can go to ?