My break is coming to an end….

Hello Rosedeec1bf9b,

I remember well the agonising waits for appointments before tests / scan results are revealed when you know they already exist. I guess that's just the way the system works?

It's natural for nervousness to build and I too couldn't resist researching. However, it's not long to wait now until you're fully in the picture and have a firm plan for treatment, just try to think of diversions to take your mind off things if you can.

I'm sure things will be OK, you'll get a date for surgery and will be on the road to treatment and recovery.

My best wishes,

Derek.

Thanks Derek, I appreciate that.

I have an old friend coming up for the day, which will be good.

i’ve been trying to get access to my medical records since the start of February. They’re meant to supply them within 28 days.  So after 5 weeks I asked for an update -nothing.

I thought I would try to get PALS’ help.  Their voice mail box is permanently full up.  I tried to phone the hospital switchboard for another number.  4 times I got cut off when I got to number 1 in the queue!

So I emailed them explaining the situation and was very surprised to get a reply within 30 minutes…. But he hadn’t actually read my email and just sent me a Subject Access request form (my emails said I’d submitted that at a the start of February).

Everything is so frustrating.  I think because the NHS was so responsive and efficient when I was first referred for this, the peripheral unresponsiveness is more obvious…..

What a palava that is! You really could do without such frustration.

I hope you enjoy the company of your friend's visit. Another day towards your appointment, mine was very boring, mostly at an airport then an aircraft on the way home from hols.

A lovely day with my friend thanks

hope you had a good holiday 

Hi

Regarding your health records, it's quite straightforward.  If you go on to your hospital website, at the top of the page you will see a 'search box' facility, type in "Access to Health Records" and you will find the online form to fill in.

I have been doing that since day one of my diagnosis and treatment, I have all the letters and scans etc., plus all the actual images and reports of my CT guided biopsy, CT and PET scans.  You just need to submit your ID details, the doctors names you are under and the dates of the records you wish to have.  I have found with my hospital that I receive all of these within 48 hours via email.  I then print them up and keep a file.

Best wishes.

Ann

Fingers and toes crossed for you that the result of the CT scan is good and you get a date for sugery. It’s awful having to wait a week before they tell you the results. I guess it’s so they can dicuss it at their MDT meeting.

My next CT is booked for the 10th April after 2nd cycle of Chemotherapy/Immunotherapy. Hoping that the treatment is working and the tumour shrinks.

Try to distract yourself as much as possible. I know it’s really hard, I go from being positive to researching and then wishing I hadn’t all the time. 

Take care 

Julie 

Thanks, Ann.

unfortunately it’s not so straightforward at my hospital, even though it should be!

I submitted the form on 5th February and received an acknowlement, since then nothing, even though I requested an update after 5 weeks.  So they have more than breached the maximum 28 days.

This is why I am trying to enlist the help of PALS.

I always get copied into my clinic letters,  but they obviously don’t include full radiology reports etc.  I also want my lung function tests for comparison and tried to get them directly, but was told I had to request via SAR.

The part of the trust where I have PET Scans, puts the reports on my patient portal, but the main hospital only has appointment letters on their patient portal.

Thanks Julie, I appreciate that.

Yes,  my appt with the surgeon Is the same day as they have the MDT.

I will have my fingers crossed for the results of your CT.

Thanks, hoping we both get good results.

Hi I had my open heart surgery for aortic root aneurysm in July and lobectomy in January. I’m not going to lie it’s been hard but I’m one who cracks on but have had meltdowns.

Enjoy outings and visits and don’t let your worries fill your day. My garden has had a rest for a year as my life stopped April 25 but have pushed myself to get on top of it now. House did and is to pot I think a bit of OCD as it drove me md not being ble to kp on top of things But in the end realised I needed to stop and rest. I hope all goes well and feel free to message if you need to chat