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Kitkat's KK Blog

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Feather
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Re: Kitkat's KK Blog

Post by Feather on Sun 19 Feb 2012, 20:44

As you say--what a woman! It must be good to know she's rooting for you. I've forgotten who she is. Is she at that place where you go once a month?
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Re: Kitkat's KK Blog

Post by Kitkat on Sun 19 Feb 2012, 20:53

Feather wrote:As you say--what a woman! It must be good to know she's rooting for you. I've forgotten who she is.

She's the lady in my "synchronicity story", posted a bit back in this thread.


Is she at that place where you go once a month?
Maggie's Cancer Centre? No, I've had to miss out of those meetings for a while now - since the back got worse ... hell of a journey to get there ... can't join in with the exercise session ... I do miss them.
They are actually based at Charing Cross Hospital where I have my appointment with the neurosurgeon on 2nd March, so hopefully will get a chance to pop in while there and have a chat and a cuppa with them after I've seen the consultant.
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Re: Kitkat's KK Blog

Post by Kitkat on Sun 19 Feb 2012, 21:06

Coincidentally, in the News today:

http://www.bbc.co.uk/news/uk-politics-17087724

New disability tests 'must prove fair and accurate'

The government must ensure new welfare assessments planned for disabled people are "accurate and fair" before they are rolled out nationally, MPs have said.

The Work and Pensions Select Committee said the tests for the new Personal Independence Payment, coming in from 2013, could cut funds people relied on.

The assessments risk being too narrow and missing wider factors, the MPs say.

The government says "a new face-to-face assessment and regular reviews" will ensure "the right levels of support".

The committee said there were "high levels of anxiety" among claimants of Disability Living Allowance (DLA), about its replacement with the new PIP benefit for those of working age.
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Re: Kitkat's KK Blog

Post by Kitkat on Tue 28 Feb 2012, 12:00

Soooo much pain today. I can barely sit on the chair here. Want to go and lie down and rest from the hurt but lying down is worse. Cat knows there is something wrong, won't leave my side for a second and keeps staring at me with that soppy look - as if to say "I wish I could do something to make it all better". Can't stop myself from outbursts of crying. I feel so terribly alone and abandoned in my plight. Seems there is no end to this and I can't look any further than the in-between moments of solace when the painkillers kick in.
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Re: Kitkat's KK Blog

Post by Feather on Wed 29 Feb 2012, 09:38

It saddens me to hear that you are still suffering such awful pain, kk. I know the "alone" feeling well but isn't Viv in touch with you on a regular basis? If I lived in London instead of so far away, I would try my best to help you. I know that's easy to say but I mean every word of it. When and what is the next stage of your treatment? It's high time they took away that pain. The NHS must be in a shocking state for you to be waiting so very long for relief. You have the patience of a saint,kk. xxx



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Re: Kitkat's KK Blog

Post by Kitkat on Wed 29 Feb 2012, 11:11

I meant as far as professionals and services etc are concerned (the system). Yes, my friend Viv's help is priceless - she insists on being with me for hospital visits etc and helps greatly with other things. My friend John also - chauffering me around and 'pestering' Angie to hurry things up with negotiations with the various authorities etc. I got a call from him yesterday asking if I'd heard anything from Angie. I haven't done since my meeting with her last Wednesday. I have asked her to copy any progress to me by email (my preferred way of communication, as means I can keep copies of progress for the record). John was annoyed because they had apparently made arrangements for her to go round to his place on Sunday, he was cooking. She never turned up and he's heard nothing from her since, despite phoning several times and leaving messages (her phone is just going straight to voicemail).
I reminded him that she is not long out of hospital herself (after a life-threatening ordeal - with the blood transfusion and all that). Look how she was emailing me from her hospital bed (!) 11.30 at night - telling me not to worry about the setback with the 'Assessment' and that room is open for further negotiation etc. All that was at the weekend and when I saw her on the Wednesday she was whizzing around helping people, taking and making numerous phone-calls etc. The other guy that she saw that day now has all his problems solved (due to her). I did mention to her that day how tired she seemed (exhausted even) and that she should take care to give some time to looking after herself at this time, instead of worrying about looking after other people's needs all the time.
I emailed her after John's call, to ask if everything is okay with her and asked that she gets the chance to give either one of us a shout (phone or email) just to let us know that she is okay, and also to remind her that there are many around who care and prepared to offer help to her in any way they can - me being top of the list there. Neither of us have heard anything back.

She did say that when(IF) the face-to-face DLA assessment is arranged, i.e. someone come to my home to do the assessment properly and see what my immediate needs are - that she could be in attendance also if I have wheelchair access here. That would be an enormous help, and I did tell her that shouldn't be a problem as I live on the ground floor. However, when I came home I realised that although on the ground floor, that's not really the case. There is a little step up onto the path as you come in the gate, then another step up onto the porch. There is access around the side to get to the back door but a sort of a rise (not exactly a step) there also coming in the door. Viv was around here on Sunday, and suggested that perhaps some kind of block of wood ramp or something similar could be sorted to overcome that problem. Also, Viv has requested that she be there at any Assessment.

The long-awaited Neurosurgeon consultant appointment is on Friday (2nd March). It's at Charing Cross Hospital - where the Maggies Cancer Care place is located, so I hope to pop in there afterwards for a cup of coffee and a chat. Not been able to make the last few monthly meet-ups there with the various survival groups. I do miss those meetings.
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Re: Kitkat's KK Blog

Post by Kitkat on Fri 02 Mar 2012, 09:32

The 'big day' today :!: Thought this day would never arrive ... THE neurosurgery appointment.
Still no word from Angie ... so much for the arranged transport to the hospital Rolling Eyes ... but what the heck ... it's actually a good day today. Actually, the last few days haven't been so bad at all, not racked with pain trying to get out of bed or anything like that. In fact, at the moment wouldn't even know anything was wrong - apart from when I go to cough mebbe or take a really deep breath ... times like that the pain hits. Not sure why, but I'm actually quite nervous about today. Viv's coming over this morning, she's coming with me to the hospital. I'll be driving up there. Appointment's at 1.30, but I'll be leaving here about noon, what with the Friday London traffic etc.
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Re: Kitkat's KK Blog

Post by Feather on Fri 02 Mar 2012, 13:26

You will be at the hospital now, kk. Thank goodness for Viv, eh? Moral support makes such a difference to how you feel, I'm sure.
I'm waiting to hear how you get on. Whatever the outcome, I hope they are able to help you. Do you have to wait yet again for results?



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Re: Kitkat's KK Blog

Post by Kitkat on Fri 02 Mar 2012, 19:25

Only just back in the door from hospital now. Been a horrendous day right from the start.
Haven't the heart to go into it all just now. Details later. Prescribed morphine tablets now.
Viv's in the kitchen making tea. Soap sandwich in a few mins (Corrie-Eastenders-Corrie again).
Laters ..............
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Re: Kitkat's KK Blog

Post by Feather on Fri 02 Mar 2012, 21:18

Be very careful with those morphine tablets, kk. I'm shocked you were given them. They can be dangerous. I hope they're not a high strength.



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Re: Kitkat's KK Blog

Post by Kitkat on Fri 02 Mar 2012, 23:05

When I read your post, Feather, I went to check on the dosage (had already taken 2 of them together with 2 others prescribed - got the prescription from the Pharmacy at the hospital before I left there. You know how you wait ages in these places for your prescription to be given - have to pull a number like in the DSS office and wait till your number comes up. Well from before I even left the house this morning I had these awful gripping vice-like pains. I know what triggered it - washed my hair this morning - usually have to pick a pain-free time to do that, it's a huge job these days especially as my hair is really long now, down almost to my waist, so it's quite a long time bending over the bath using the shower head. Anyway, that was absolutely no problem for me this morning and I was actually thinking I'm having a good day today. No problem getting out of bed either. BUT - although no problem while actually washing my hair, it's afterwards that it affected me. Just before Viv arrived I was screaming out with the pain and struggling trying to get up from where I had sat down just for a moment. The stick wasn't near to hand, and even if it was wouldn't have helped, it was one of those situations where I just had to bear it until it went away. Couldn't move. That was me set for the day. Drove up to Charing Cross and had a dreadful time trying to get out of the car, same problem, then bit of a walk into the hospital. Turned out all appointments delayed for one hour (some kind of emergency at the hospital). Had to stand up for the whole of that wait because if I sat down would have the same problem getting up again. Pain was fierce all the time, slightest little twitch and the grips would come again. Was long time in with the consultant also. The prescription was for different painkillers altogether to take now. 3 different items: Tramadol, Diclofenac and Morphine (just one week's supply of this - and ONLY when absolutely NEEDED). When went to get the prescription from the Pharmacy, I couldn't even answer the questions that she was asking (and the explanations of what they were etc), the pains were so severe while standing there. Said whatever they are I need to take some right NOW. So she got me some water and took the tablets out for me to take - said take 2 of these and 2 of these.
(Sorry if rambling a bit ... blame the tablets, lol)
Anyway, when I read your post, I thought OMG, the pharmacist gave me 2 of these morphine tablets to take... went to check the dosage level - only to find that the Morphine is actually in the form of an oral solution, not tablets - was the 3rd item on the prescription, and not what I had taken at the hospital. Two 5ml spoonfuls every 4 hours when required.

The neurosurgeon had given me a quickie sort of examination (just while sitting), hit me with a hammer in a few places etc, reflexes and such. The nerves are not affected at all. Saw the photos from the MRI scans and she went through it all with me. Not discitus - some other name, begins with 'M'. to do with disc space and muscle pressure or something. Surgery would be an absolutely, totally last resort. What I have to do for the immediate is physiotherapy and pain management at the pain management clinic. But that has to be arranged through my GP. Not her department. I am actually discharged from there for now. Will only be seeing her again if the other proposed treatment/therapy doesn't work - as she said, last resort. She will be doing a full report - which will be sent to my GP (probably about 1 to 2 weeks' time).
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Re: Kitkat's KK Blog

Post by Feather on Sat 03 Mar 2012, 11:07

OMG, kk, what a day you had! What can I say? It's hard to see a bright side when you are in such pain, but there is a bright side--it's NOT cancer. Keep dwelling on that and try to look forward to the time when the agony has been sorted. I have heard of this condition before. I think it's quite common actually. My son Leigh's partner's brother had 2 operations for it. The 1st one wasn't a success but the 2nd one was. I think what gives the pain is that the cushioning between the discs has become depleted and you have bone rubbing against bone. The reason an operation is the last resort is that the problem is so near the spinal cord, that the slightest mistake could leave the patient worse off than before. Still, there are hundreds of these ops being done all the time. There must be as people get older with all the health concerns that accompany the passage of time. Ooops!!--I don't mean you are old, kk, but time marches on for us all.
I hope the phisiotherapy helps the pain so that the quality of your life improves dramatically but, if not, then an op should do the trick.
My thoughts are with you, kk.xxx.



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Re: Kitkat's KK Blog

Post by Kitkat on Sat 03 Mar 2012, 12:04

Yes, it has now been officially confirmed that this problem is not connected to any cancer spread. Some consolation I guess. She mentioned severe bruising and pressure, depleted something or other, and this is what's causing the pain. Disc degeneration was mentioned also. I was so relieved to hear that surgery is not in the offing, but on the other hand there doesn't seem to be anything definite on offer to "fix" the problem, just as I see it indefinite measures to "ease" it.
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Re: Kitkat's KK Blog

Post by Jamboree on Wed 07 Mar 2012, 08:40

Only just read your story here Kitkat. pale

You deserve a bit of a break. Hope you get it soon. I love you
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Re: Kitkat's KK Blog

Post by Kitkat on Wed 07 Mar 2012, 13:07

I do agree, Jamboree sunny ... but not holding my breath.

I did as suggested last Friday when I phoned for appt with my GP (and the earliest appt was 20th March - which incidentally is the same day I have appointment with my Oncologist) - and phoned this morning at 8:45 to arrange see her at the end of her extended surgery today. Nope! They told me all booked up today, no slot - and the nearest appt to see her would be on 26th March!!! They could fit me in today with another doc in the surgery, one that I've never seen before ... absolutely pointless doing so in the circumstances. So, the alternative was to come in at 10 o'clock and join the waiting queue to see the Emergency doc (5 minutes slot only), and only then if it is an absolutely critical medical emergency. I said it was and so appt was made. After a while, I thought about it ... got more and more annoyed, so I phoned back with the intention of insisting that I see my own GP at the end of extended surgery. They said again, NO slot - it's emergency doc or wait till 26th March. Who is taking the emergency surgery today? ... my own GP !!!!!!!
AND ... when I got there, there were only TWO other people waiting ... AND they were booked in AFTER me.

Whatever about the morphine, she not happy about my being prescribed Diclofenac. Said she would never have prescribed that for me. Apparently there are quite a few "issues" with this particular drug. It all seems very wrong. For instance, along with that, I've been prescribed what I was told was ONE WEEK's supply of morphine sulphate (to take only when needed). Yet, on the bottles (two bottles) it says 2 5ml spoonfuls to be taken every 4 hours (week's supply). I have only taken it once since Friday, that was on the Saturday when it was really, really needed, and even then I just took the one spoonful - and bliss ... it really worked and it worked fast, almost instantly, so it's nice to know it's there and something that really does the job, but I certainly won't be in a hurry to take it on a regular basis, or even again unless I am really desperate with pain like I was on Friday and Saturday.

GP can't do anything about referral for physiotherapy or pain management clinic until she has the official report from the Neurosurgeon. That's gonna be another possible 2 weeks.
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Re: Kitkat's KK Blog

Post by Feather on Wed 07 Mar 2012, 21:47

Here you go again---wait, wait, wait. At least things are progressing, however slowly. The best news is it's not cancer and you CAN take a morphine tablet for the worst bouts of pain. xxx



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Re: Kitkat's KK Blog

Post by Kitkat on Thu 08 Mar 2012, 11:53

Spoke too soon. Yesterday I had to take another dose (well, half a dose as in one teaspoon, not 2). Slept like a baby. Not long up as it happens and today so far it's just been sheer agony moving around the place. Not the jarring and locking pains but a constant sheer burning sort of pain. Finding it extremely uncomfortable even just sitting on the chair here. Managed to feed the cat with the help of Mister Grabbit. I'm just putting off for as long as possibly bearable having to dip into the magic morphine again. Someone coming around this afternoon to check out a leak in my sitting room ceiling (well, not a pouring leak as such, more of a drip. There's a sort of a T-mark on the ceiling - just a bit away from the light fitting (thank goodness!) and there's a line of water drops along this mark and every now and then the one at the end just drips down to the floor. Looks like could be something to do with a pipe problem in the flat upstairs from me. I'm on the ground floor of a 3-storey house. Between 1 and 5 is all they can give me for these guys to come ... I don't want to be falling asleep when they're here. At least it doesn't mean having to take a half day off work to be here when they come.
I've taken the other prescribed medication and hoping that'll stave it off for a bit.
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Re: Kitkat's KK Blog

Post by Feather on Thu 08 Mar 2012, 12:06

Wish I could wave a magic wand for you. Hugs.



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Re: Kitkat's KK Blog

Post by Kitkat on Thu 08 Mar 2012, 14:21

The plumbers have been and gone now. The problem has been pinpointed to a leaking washing machine in the flat above me.
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Re: Kitkat's KK Blog

Post by Kitkat on Sun 11 Mar 2012, 23:46

I've just had a horrible incident. Really horrible. Had a half dose of morphine this morning - along with the Tramadol tablets dose. Had already decided not to take any more of the Diclofenac after what my GP had said (controversial issues with it?) She prescribed more of the Tramadol...
Anyway, was meeting friends for lunch today. Set the alarm early as was hoping to wash my hair before setting off and after the last incident there thought I'd leave plenty of time afterwards in case it triggered the same problem as that awful day of my hospital appointment. Same thing ... got out of bed okay, but when I went to test bend just a little over the bath, twinges told me it wasn't a good time. So instead had some breakfast, took tablets and went back to bed. Actually slept a full 4 hours and only woke up with the phone ringing. Took some Tramadol after lunch and couple of hours later set off to drive back home. Getting sitting in car was a bit slow and painful but I sat for a while before driving off and just went slowly over the "traffic calmers" etc. Getting out was really bad but I thought well I can take more tablets when I get inside. I was actually fine when got inside though and of course need to take any of the medications with or just after food. Had such a huge lunch couldn't face even a slice of bread at that stage so thought I'll leave it for a while.

Was fine after that, sitting for a long time ... had letters to write and filing and stuff to sort out ... when suddenly sitting became extremely uncomfortable which reminded me should take some medication. Few vice-like grips when I went to get up out of the chair. Was going to go for the morphine as it helps with sleep also. Went very slowly out to the kitchen was going to make a sandwich to go with it. Had a handful of chocolate raisins in the meantime and one dropped on the floor. Thought I'd better pick it up now because Pepsi might think it's a treat and go to eat it - but then realised I'd left Mister Grabbit in the car. So, bent down very slowly with walking stick in one hand and oooooooooooh just had my hand almost there when the WORST EVER crippling pain shot through me. Felt like it was in a different place than ever before, literally just at the base of my spine. I just couldn't move. Up, down, sideways - the tiniest little twitch was hell. I could feel sort of shuddering going up my spine and my legs were shuddering also with every shoot. Waiting for it to die down and go away (like I do with other times) it just wasn't happening! The morphine was just an arm's length away but couldn't move to get at it. My phone was in my pocket but couldn't make any sort of movement to get at it. That happened at 10 o'clock. It was gone half 10 by the time I could make any move without screaming with the pain. Took the full dose of morphine this time - which normally would take effect straight away ... but I can still feel it when I make certain movements, although obviously not quite so sharp.
I buzzed the flat upstairs and one of the girls went round to the car for me to bring Mister Grabbit in, as I can't go through the night without it. I park the car round on a little side road, not right outside the house because it's a very busy main road traffic-wise and I take so long to get in/out of the car which means the door is wide open onto the road for a long time. Too dangerous. Viv is coming over tomorrow, but I really don't think I could wait that long. We're going into a One-Stop-Shop not too far from me to try and sort out stuff like sickness benefit etc and a whole load of other things, so hopefully will get something in progress there tomorrow. It's one of these places where you take a number and wait to be seen. No appointment necessary. Never been there before. Glad Viv's coming with me. (She insisted).
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Re: Kitkat's KK Blog

Post by Feather on Tue 13 Mar 2012, 12:56

My backache pales into insignificance when I think what you are having to go through. It must be alarming for you living alone with your condition. You'll need to keep your mobile about your person at all times. I know I was glad of it the time I accidentally locked myself out of the house. Leigh had to come out of town to let me in and there was snow on the ground. I didn't even have on a coat as I'd just popped out to feed the birds. I stood and shivered for about half an hour and my socks and slippers were dripping wet. No harm was done butthank goodness for my phone.

I hope it's not long till you can be rid of your pain. xxx



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Re: Kitkat's KK Blog

Post by Kitkat on Fri 16 Mar 2012, 10:05

It's exactly two weeks now since the neurology appointment. Phoned my GP this morning to see if the Report is with her yet. No, still awaiting.
GP cannot make the recommended referral for physiotherapy or pain management clinic until the official medical report is with her.
Just have to keep phoning every day to see if it's arrived.
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Re: Kitkat's KK Blog

Post by Kitkat on Mon 19 Mar 2012, 13:30

AND SO THE FLAMIN' SAGA CONTINUES ............

I've just spent over an hour on the phone trying to track down this blasted medical report.
I have an appointment with Oncologist at Central Middlesex Hospital tomorrow and he is relying on this report. My employers are on tenterhooks waiting for it, and not to mention that my GP cannot make the recommended referrals until the official report is with her.
GP hasn't received it yet ... they suggested I phone Charing Cross Hospital where the appointment was to speak to the Neurosurgeon's secretary. FIVE attempts at getting through to the right department there ... and it turns out that her secretary is based at St Mary's Hospital in Paddington! Phoned there and it's an answerphone ... leave your number, short message and someone will call you back ..............

.............

and to top it all, my second Mister Grabbit has broken, the spring's gone on it.

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Re: Kitkat's KK Blog

Post by Kitkat on Wed 21 Mar 2012, 15:05

I have been in tears all morning. Part pain. Part frustration. No-one can have anything near a full understanding as to the extent of the reasons for my tears. Extremely bad day yesterday, which carried on right through the night.

Still no medical report. I managed to get through to the nuerosurgeon's secretary yesterday (nobody had called me back after my answer-machine message). She confirmed that the report had been posted to my GP on Friday (16th), sent by 2nd class post.

On Monday I managed to wash my hair. It was exactly 17 days since my last attempt (which was on the morning of my appointment at Charing Cross and was the incident that triggered off one of the worst elongated periods of pain experienced so far).

Had an appointment with my oncologist yesterday at Central Middx Hospital. Had to wait quite a while outside the office before going in - turned out the reason for the delay was that he had been reading the very long email I had sent to Charing Cross Hospital ahead of my appointment with the neurosurgeon - to be placed before her giving brief collated details of everything leading up to that appointment and the reason for my referral there - and also the reason for the request (by the Oncologist) to have the appointment brought forward. The appointment was not brought forward - and as it turned out, I did not see that neurosurgeon, but someone else filling in for her on that day. That person was not aware of any email. It is that person who changed my medication (GP to review) and is compiling the medical report (which has not reached my GP yet) recommending physiotherapy and pain management clinic course.

The only reason that email is now on my file is because at my appointment with the Gynaecology Surgeon - the person who carried out the Hysteroscopy operation (again someone else filling in for him), I brought a copy of the email with me and asked that it be put on my file.

Oncologist is appalled at all that I have been going through and the amount of "waiting" time involved, while all that time I am in pain and progressively moreso as each day passes. My appointment yesterday was fixed on the understanding that the neurosurgery report would be to hand. It is not, and he had not received the report either. Had to rely on my verbal account of what the neurosurgeon had said. In his opinion, for my own sanity apart from anything else, it is imperative that the referrals are made ASAP for physio and pain management. He cannot understand why a telephone call could not have been made from GP to Neurosurgery asking for the report to be faxed over. He also mentioned his concern about the possible infection which doesn't seem to have been mentioned and wonders if perhaps an antibiotic or something should not have been recommended.

He too was surprised about the morphine prescribed, but agrees that in the circumstances it is my saving grace for now at least, if only in the short term. With regards to my cancer situation (which of course is his speciality and the reasons why I see him), he said that the cancer is the very least of my worries right now. I was unable to lie flat on my back for my examination by him. A mammagram has been arranged for some time in April. (That in itself may proved difficult, knowing the contorted positions one has to get into - and stay in, while the machine takes the photos. Even under normal circumstances it's quite a painful experience). He said as soon as I have the mammagram I am to phone his secretary (Macmillan Nurse) who will let me know the results straight away.

I phoned my GP reception at 11 o'clock this morning to find out if they are yet in receipt of the Neurosurgery Report. They are not. Asked to speak to my GP and was told that she is in surgery, leave my number and she will ring me back. So far she has not done so.

I then phoned the neurosurgeon's secretary (who is based at St Mary's Hospital) and asked her to fax through a copy of the Report to my GP, which she said she would do straight away.

At time of writing it is now 3 o'clock and I am still waiting to hear back from GP.
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Re: Kitkat's KK Blog

Post by Kitkat on Wed 21 Mar 2012, 18:30

Later:
My GP did phone back me later and confirmed that the medical report had still not arrived at the Surgery!

I told her that I had spoken to the Neurologist's secretary earlier on in the morning who had confirmed that she would fax it through.

GP said even when the report arrives you do realise that there is nothing I can actually do. It is up to the specialists. I told her of my appointment with Oncologist (specialist) yesterday, of his thoughts on the matter, and the fact that because of the pain situation he was unable to examine me fully re the regular breast cancer check-up - and also reminded her that the referrals ARE up to her (GP), as the Neurologist (specialist) had said that the recommended referrals must come from my GP - as that specialist has now discharged me back to my GP. (The reason for that is something to do with money management through the different departments).

She said as soon as she does get sight of the report she will get the ball rolling - and will phone me to let me know when she has done so.

I also requested that she let me have a copy of the Report for my own records.
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lar-lar
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Re: Kitkat's KK Blog

Post by lar-lar on Thu 22 Mar 2012, 00:16

Oh gosh! This is awful and I'm feeling for you. Surely not much longer now..

    Current date/time is Sun 16 Dec 2018, 17:26