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Community blog

Needing to vent...

Posted by homphomp

13 Feb 2012

...why do the NHS make life so much more difficult?

I went for my first 6 moth blood screening test way back in mid-December. I'd been told that the Specialist Nurse would ring to let me know the results so I wait, and wait, and wait....nothing. OK the test takes a while and there was Christmas in the way...so I'm patient.

I send a chasing email and wait, and wait, and wait....nothing.

Rang up this morning to get her voicemail, she's on holiday, ring the secretary. So I do to be told she's actually on long term sick, but oh by the way "We don't give the results to patients" WHY NOT? They're my results, it's my body, I want to know if I'm still healthy!! Aaaarrrrgggghhhh!!!!

Secretary is now posting the results to my GP - they didn't do that before? - so now I have to wait until they arrive before I can phone him to ask if I'm clear.

God, it's hard enough being diagnosed with OC without them making it so hard just to find out a simple thing like whether its coming back or not...I could cry I'm so angry!

On a more positive not I'm assuming alls well or I'd have been called back to see the surgeon.

Leave a comment See 23 comments

23 comments

BusyLizzie

13 Feb 2012

Hi Homphomp,
Great name - very Winnie the Poohish.
You are not alone and my CA125 is on an upward spiral, so it is really hard for me to pursue hard finding out something which is likely to make me cry! LOL.
My specialist nurse is off sick until 6th March. My stand in nurse is in a different NHS trust and can't see my results.
GP always tell me they don't have the results yet even though I am told they go on to the system now without request.
Oncologists secretary is usually helpful but I don't like using favours for blood results, I would rather use them for referral paperwork or chasing scans.
Chemo nurses hate giving me my CA125 cos they say I am too obsesessed by them and most patients only have them done every 2-3 chemos.
CA125 is a very reliable measure for me, and in my experience if you go for a second opinion, they love knowing your CA125 history of repsonses.
Vent vent.
Love Lizzie
X

Isadora

13 Feb 2012

Lizzie,
I think that " most patients only have them done every 2-3 chemos" is rubbish (well, actually I think it's something far ruder!!). It might be different where you are, but my onc. definitely takes the measurement every time for those of us in whom it is a good marker (like you!). Sometimes I think they (the nursing staff) play power games. How dare they tell you what information you need!!
Get your GP onside, and ring the day after the bloods for the results.You should NOT be being caused stress by the witholding of your own information. It's different if you don't want the info - but you obviously do!!
Bestest,
Isadora.

BusyLizzie

13 Feb 2012

Hi Isadora,
I _have_ to know. It's who I am. I now write on the CA125 request onto my blood form myself if the request is not there. My GP is actually great, but I think there is some admin c@ck up and my address is on the system twice and the surgery admin staff always look at the wrong one. Since I have to 'work' with these people, I do try and keep them on board, so with the chemo nurses, it is a case of softly softly catchy monkey. As Homphomp says though - it does make you want to weep extra buckets sometimes.
Love Lizzie
X

Isadora

13 Feb 2012

"I _have_ to know. It's who I am."
Me too!
I xxx

Osborne

13 Feb 2012

I havent been diagnosed yet, but have had big problems trying and trying to get info. Its crazy having loads of trouble when info is all that is required. have been promised results, but seems some of us arnt lucky re iformation. One excuse after another is given . Hope we get lucky in future. maybe all will be fine with me so only need to insist on other clinic appointments info. Fed up with being told nothing...or we dont do that..will tell you if anything wrong. Fingers crossed for both of us.

Maverick

15 Feb 2012

Dear Lizzie

I had a C0125 test before every chemotherapy session. They also gave me a sample request form when I finished my last treatment. I'll have my first 3-month check next week. I had a few worrying symptoms a couple of weeks ago and was offered a blood test the next day. The Oncology Nurse rang 3 days later with the results.

I don't think you should accept what your NHS Trust is telling you. There really should be a standard service across all trusts and regions.

I've joined the Ovarian Voices group hoping to do a bit of lobbying while I'm fit enough.

I'm really sorry you seem to be going through a tough time.

hugs, Annie xxx

BusyLizzie

15 Feb 2012

Hi Annie,
Never fear, I always get the results I want - it just takes a little effort. As homphomp says, it does make you a little mad. I am saving my real fighting instinct for the bigger fight!
Hope work is going well for you. I will start my 4 hours about 10am, when I have had a little walk (or shuffle these days - LOL).
Love Lizzie
X

Maverick

15 Feb 2012

Hi Lizzie - thanks for your update.

Re work - it's all a bit pear-shaped. Someone's been given my job and I've been offered another one!!!!!

Not wise. This is against Employment Law and Equality Legislation. It's an interesting development. I worked as a disabilty officer for a number of years and continue to work within the field of Equality. What was previously an interesting part of my work has now become a personal experience.

I have to explain gently why I should return to my job. I'm looking forward to seeing what happens. Hopefully I will return soon as I am about to go on to no pay as from next week.

Keep your fingers crossed for me. xxx

BusyLizzie

15 Feb 2012

Dear Annie,
Of course I will. I have to say my work is both a super comfort and support, so perhaps this is one respect I am luckier than most. I had 2 bunches of flowers this week from people at work. How lovely is that? I am still working remotely, but it gives me structure to my day on the 3 days I work, keeps my mind active and in touch with some great folks. If I am well enough again even for a small time at least, I would love to work in the office for a bit. Money isn't really the issue as I am on insurance now, and my number of hours are not enough to top it up any more. However, for 12 hours a week - I am doing well financially. If only I could trade it all for my health back

Love Lizzie
X

Maverick

15 Feb 2012

Dear Lizzie - It's good you have your work. It must keep you sane some days. I should imagine your colleagues miss you very much and those bunches of flowers are well-deserved.

Working in the field of disability for many years I realised that there was much unfair practice and discrimination. My superiors at work aren't nasty - just rather naive and insensitive. I'm really looking forward to rejoining the team and getting stuck into work again. There are so many good friendships at work and even today I had lunch and a good natter with a colleague.

I will have to leave my job one day. I've been helping my husband with his business during my sick leave and that has been fantastic - an IT playground! It's nice having that as Option 2 when working in my current job is no longer practical.

I know exactly what you mean about trading in all the money in the world to have your health back. At least you're financially secure. So dreadful for many people who lose their health and have no financial security. It's a common problem for people with disabilities.

Wishing you lots of love. xxx Annie

Isadora

13 Feb 2012

Grrrrr!!
It does make you weep.
Actually; you don't have to wait - your GP can access your notes online and tell you the results. Mine is brilliant and always takes the oncology dept by surprise because she's given me my results long before they've even got them. She agrees: they're OUR results.
I'd ring the GP now, and ask!
Good luck; as you say - I'm sure they are fine, or you'd have been re-called.
Isadora.

homphomp

13 Feb 2012

thanks Isadora...I will! My GP has a phone in session tomorrow morning so I'll give him a call.

I do feel better for a rant, it's just that they make things so infuriatingly difficult!

Osborne

14 Feb 2012

Some of us have no choice but to rant. Trouble is it upsets the folk who should provide information, not sure why as much easier to provide it.

Osborne

14 Feb 2012

Depends on gp. Gp said hospital should tell me, hospital said gp should. secretary said its up to doctor. gp said we dont get info from MRI. Paid loads eventually, lots of incorrect info also. Now am told will get it in future, time will tell..

MargaretJ

14 Feb 2012

Hi homphomp! Rant away! It's one of the best things about this site. I am another"have to know" type! A control freak me! Knowing is part of the control illusion! I always get my CA125 done every chemo as it is a good marker for me. There has never been any issue about it here. The chemo nurses at Jimmies were quite informative but I may be transferred to York next time so I don't know what it will be like there.

I know some people don't want to know but for those of us who do it is arrogant for someone else to decide whether we "need to know". I have friends who tell me I should not think about the canccer as coming back when I know it is when not if and it irritates me to be told to pretend I have recovered. I face my demons and feel better for it. It is just how I am.

You keep being awkward, they might just tell you to get you off their backs!

Margaret!

Jane

14 Feb 2012

If you want to know your CA125 anytime independent of chemo get your gp to give you a form to do it at any local hospital. When I've been stressed I've even done it the same week as the hospital test because the gp will get it back in a few days, I can't even begin to describe the nightmare I constantly find at the NHS, I would never stop, I'm sure it makes us iller.
Jane
x

Lizneild

14 Feb 2012

On the red printed form PATHOLOGY REQUESTS that we hand in for our blood test there is a box - copy to Make sure it is filled in GP. If not fill it in yourself. Sometimes it gets forgotten.

homphomp

15 Feb 2012

that's very good to know...thanks!

GeorgeSuffolk

15 Feb 2012

had chemo and surgery for ovarian cancer last year, was told all clear in Oct, had my 3 month check on 31/1/12 and now have it in my liver, bit of a shock, had liver biopsy yesterday, feeling very down, dont quite know what to expect now, have been told next lot of chemo will have worse side effects than before and wondering if worth it

BusyLizzie

15 Feb 2012

Hi George,
Which chemo have you been offered next? I am afraid several of us here have had quick reoccurrences after first line. It is all a very personal as to when to call it a day, but I am 45 and want to keep on trying. If you ever want to talk, do blog and let us know.
Love Lizzie
X

GeorgeSuffolk

16 Feb 2012

Hi Lizzie, I'm not sure of the names of chemo, but 2 drips every 3 weeks again and 2 weeks of tablets in between, apparently all the skin on my hands and feet will come off and be sore (lovely), I'm sure I will give it a try, as I have a lot to live for, but am just a big coward when it comes to feeling ill. The trouble is I'm a nurse and used to looking after others and finding it hard to cope with the reversal in roles, perhaps I've seen too much. It's reasurring to hear from people in the same boat, thanks
Love George

BusyLizzie

16 Feb 2012

Hi George,
Please do find out and let us know which chemo you are on...it is so useful for us all to compare notes. I am on caeylx and that can also cause skin issues. I have had dose 2 though, and no issues yet (touching my head to touch wood). The key with mine is supposed to keep hands and feet cool during the infusion. I do love that word infusion...it sounds like something so pleasant. LOL.
Stay strong George - there are good days and bad ones, but the good ones make it worth it.
Love Lizzie
X

soapsuds

16 Feb 2012

Hi George,
have messaged you
Suex

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