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LindaH
Posts: 186
Joined: Tue Jan 15, 2013 8:12 pm

Still waiting for injection to kill Celaic Nerve

Postby LindaH » Wed Nov 06, 2013 11:21 am

Goodness I cannot even begin to explain to you how much pain I was in last Saturday, Sunday and Monday.

The pain in my back is constant, it's very much like a noise that would be in the background, always there, but on Saturday morning it suddenly became much worse though I do not know why. I didn't do anything to trigger it, it was just excruciatingly bad. I took my Morphine, but unfortunately the adverse affect of taking the Morphine is that it is upsetting my stomach, even though I always make sure I take it with food. So Saturday I just stayed in bed all day and tried to sleep the pain away.

Even though I had slept all day, after I'd tried to eat something for my tea, I had to go back to bed at 7pm as I just couldn't stand it any longer. Sunday was more or less the same, though I did manage to eat some tea. Monday I was crying with pain. I rang my Oncologist secretary, but she is away on holiday, so I explained to the stand in secretary that I was waiting to have an injection to kill the nerve which is being compressed by the tumour. She said she would have a word with him for me.

She phoned back a couple of hours later and said he has sent an email to the department which will be doing the injection and he would try to get it hurried along for me. I asked the stand in secretary what could I do about the awful pain I was in, she said she would ask the MacMillan nurse and call me back. This MacMillan nurse I have seen once since this all began a year ago. She is supposed to be my first port of call when I need help......

Anyway, when my Oncologist's stand in secretary phoned me after speaking to the MacMillan nurse, she told me to just go to A & E.......I said if I do, will they do the injection for me? "Oh no" she said "They will just give you stronger painkillers"......what is the point of trying to get help from these people.

I decided to see if I could get an appointment with my GP, no there was nothing available. The thing is, with me having cancer shouldn't I be a priority patient? Shouldn't they call to see me? But that kind of service seems to have all gone out of the window. Gone are the days when a doctor used to call on a home visit. The GP secretary said she would ask for a stronger painkiller for me....by now I was in constant tears and just so poorly.


Hubby came home early and he phoned the department where the injection is going to be done and find out how far up or down I am on the list. His secretary said she had seen an email about me, but the doctor who does the injections had only just come back from holiday so it could be some time before he gets through all his paperwork. I just cried down the phone to this woman and begged for her help. She said she would print the email my Oncologist had sent and put it on the doctor who does the injections desk marking it urgent.

I thanked her, but it's now Wednesday and I still haven't heard from the hospital.

That's just the problem these days, unless your paying for treatment or are someone famous, the chances of getting urgent attention from a doctor is practically nil. Nobody takes any notice of urgent anymore.

I was given painkillers from my GP, but it's some I've already got and what I find I have to do is make sure I take the painkillers well before the pain begins, that is the only way I can keep it under control. It's so annoying it really is, especially when you've paid into the National Insurance all your working life and now when you need it, it's slow at coming back to you.

Anyway, fingers crossed the injection will be soon.

Linda

MSH
Posts: 228
Joined: Tue Apr 30, 2013 11:03 pm

Re: Still waiting for injection to kill Celaic Nerve

Postby MSH » Wed Nov 06, 2013 2:39 pm

Sorry to hear you're having these problems Linda, I hope the injections work for you. You're right you should be a priority patient, and either your GP or the MacMillan nurse preferably both should be working to make you pain free.

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: Still waiting for injection to kill Celaic Nerve

Postby Cathy » Wed Nov 06, 2013 2:48 pm

Hi Linda

I'm so sorry to hear this - Jonathan is suffering with stomach pains at the moment that he is finding hard at times so I do empathise.

It is right though that you have to keep on top of the pain killers - take them before pain starts. This is my battle with Jonathan (who is a law to himself with regards to these things).

I'm surprised your GPs don't have slots aside for emergencies? Not withstanding that, I've found when I've rung up for Jonathan and been given an appointment X days (weeks!) into the future, telling them he is receiving palliative care normally conjures up a much sooner appointment, often on that day.

I hope you hear soon. I'd be tempted to ring back whoever it was your hubby spoke to?

Cathy xx

cestrian
Posts: 220
Joined: Mon Jun 03, 2013 12:20 pm

Re: Still waiting for injection to kill Celaic Nerve

Postby cestrian » Wed Nov 06, 2013 3:57 pm

Hi Linda

The Post Code Lottery strikes again!! Coupled with the recent scandalous news about fiddling waiting times at Colchester Foundation Hospital Trust my blood is at boiling point. My own GP has offered to see me at home if I ever need him to do so from the moment I was diagnosed though mercifully I've not needed to take this up so far. I had key-hole surgery very soon after diagnosis to effect a nerve separation procedure that killed any pain from the pancreas as if by magic. Put simply it is a downright disgrace that anyone suffering from this disease should receive anything other than the outstanding treatment I have had since day one. It certainly should not be left to the whim of the local Trusts what level of service they will or will not provide and this applies equally to Primary and Secondary care.

My heart goes out to you and I fervently hope you have better news on when your pain will be relieved. Or you could just move to Chester!!

Love and Peace

Mike

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: Still waiting for injection to kill Celaic Nerve

Postby J_T » Wed Nov 06, 2013 4:35 pm

Oh dear Linda, this is just not good enough. In your situation I would just ring 999 and to hell with them. We actually did do this for Ray early on when he was having horrendous pain.

I must say our GP was absolutely brilliant and called in on us all the time saying 'I was in the area-ish'" seems like post code lottery IS at work here as Mike says. I hope you get it sorted sharpish, or get down to A&E and start creating a scene!

Cathy, sorry to hear Jonathan is feeling uncomfortable. He really needs those meds but I suppose when he's managed without them for so long he would be loathe to admit he needs them again :(

Mike, I'm with you on the Colchester thing. Scandalous.

Julia x

cestrian
Posts: 220
Joined: Mon Jun 03, 2013 12:20 pm

Re: Still waiting for injection to kill Celaic Nerve

Postby cestrian » Wed Nov 06, 2013 8:20 pm

Colchester - bit reactionary I know but investigate rigorously, if proven then prosecute and dismiss - absolutely zero compensation for those guilty of pressurising, i.e. bullying junior staff to falsify records.

Mike

Sones
Posts: 108
Joined: Tue Aug 21, 2012 7:31 pm

Re: Still waiting for injection to kill Celaic Nerve

Postby Sones » Wed Nov 06, 2013 8:41 pm

Oh Linda I'm so sorry to hear this, it's unacceptable to leave you waiting when your experiencing so much pain. Unfortunately I don't have any answers, wish I did. Have you tried contacting PALLS? It's with a try.

I have first hand experience of Colchester and lets just say it was a positive one.

Hope you hear about your appointment very soon Linda.

Sue.x

Sones
Posts: 108
Joined: Tue Aug 21, 2012 7:31 pm

Re: Still waiting for injection to kill Celaic Nerve

Postby Sones » Wed Nov 06, 2013 8:45 pm

Sorry the above should read my experience of Colchester Hospital was NOT a positive one. Ipad tends to predict text - so annoying.

Sue

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: Still waiting for injection to kill Celaic Nerve

Postby InfoForMum » Wed Nov 06, 2013 10:46 pm

Linda hon, do you need anyone to push on this for you? I do a great line in "being" my Mum when I need to chase things for her. Would be honoured to "be" your daughter/sister and kick any asses you haven't kicked yet.

I'm guessing the answer will be no and I can't actually do anything apart from be appalled on your behalf, but I would suggest you talking to your MP or making a formal complaint - sensitivity about delayed cancer treatment is likely to be high at the moment and I for one don't see why you shouldn't take advantage of that.

Hugs

Sarah

belgrade
Posts: 157
Joined: Fri Jul 05, 2013 11:53 pm

Re: Still waiting for injection to kill Celaic Nerve

Postby belgrade » Thu Nov 07, 2013 12:27 am

Hi Linda,
Sorry to hear things are not too good at the moment. I would echo Sarah's advice and contact your MP. When Dave was waiting for an urgent referral for more than 3 weeks I contacted our MP on a saturday night at 9.30pm. She responded at 11.15pm and assured me she would be contacting the CEO of the hospital concerned on the monday morning. This resulted in an appointment 4 days later!!!! Strange what an MP inquiry can do.....I'm sure it had nothing to do with the fact that the MP is heading an inquiry into NHS services in England!!!!!
Hope your situation is quickly resolved.
Hilary x

LindaH
Posts: 186
Joined: Tue Jan 15, 2013 8:12 pm

Re: Still waiting for injection to kill Celaic Nerve

Postby LindaH » Thu Nov 07, 2013 9:19 am

WOW thank you so much, you've all given me ideas to which if I do not hear from the hospital today, I am going to put into place.

I have actually been in touch with my MP with regard to other matters to do with my cancer and I must admit he was straight there for me and okay, whilst I didn't get what I wanted at the time, it certainly made one or two people sit up and listen.

Right, if there isn't an appointment in the post this morning I will be on the phone right away and yes Sue, I think PALS will be a good place to start.

Sarah, bless you. If I do need you, I will call on you I really will, thank you. x

Thanks Mike. it's just like you say, post code lottery playing with peoples lives.

Cathy and Jonathan Big ((hugs)) to you both and I have dropped the "Palliative Care" words in before today and like you say 'sometimes' it does help.

Thanks again everyone, I don't know what I would do without you all.

Linda x

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: Still waiting for injection to kill Celaic Nerve

Postby Cathy » Thu Nov 07, 2013 5:41 pm

Great stuff Linda

Let us know how you get on.

Julia - thank you. I've just updated my own thread now..

Cathy xx

LindaH
Posts: 186
Joined: Tue Jan 15, 2013 8:12 pm

Re: Still waiting for injection to kill Celaic Nerve

Postby LindaH » Thu Nov 21, 2013 9:56 am

The hospital phoned me Monday just gone saying could I come for my Nerve Block Injection tomorrow - Tuesday. Most certainly I can.

Be there for 12.30 no food 6 hours before and someone will have to be with me to take me home, so hubby took the day off.

We arrived 12.30 as instructed ready, willing and eager, only to be greeted by a receptionist who had been search for my notes in a rather frantic manner then came to me to say..."Erm I'm sorry, the procedure is on Thursday not Wednesday".........

I was (for once) speechless. Hubby will now have to take today off and even though his work are 'okayish' about it all, there's only so much they will take.

So, in another couple of hours I will be there smiling, keeping calm, but let anyone one hesitate about this injection and I will not be responsible for my actions.

Linda x

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: Still waiting for injection to kill Celaic Nerve

Postby J_T » Thu Nov 21, 2013 10:09 am

Linda:-O !!!!!!!!!!!!

I hope you're keeping a diary? So angry on your behalf. Why is simple appointment date so hard to deal with?

Good luck today!

Julia x