Hi everyone, just a quick update for you well I had my radical nephrectomy on the 15th Aug

[marushka]

operation went really well ,even had key hole surgery ,so please Lord all the cancer is gone,got home after 5 days then just my luck ended up being rushed back in as my wound had become badly infected,as someone had forgot to put me o the list for the nurse to attend and dress my wound on a daily basis so after 3 days no wonder it was infected to the point that the inflammation level in my blood was 160,what i'm still trying to get my head round is being rushed to the nearest A&E then left on a trolley in a corridor for over 2 hrs,then a doctor appeared from nowhere proceeded to take a normal ball point pen out of his top pocket and draw a rather large circle around my infected wound, my eldest brother was also privy to this madness and after the same doctor had taken some blood from me he told me that he would be transferring me to the Southern General as that's were I had my operation,needless to say I told my brother to take several pictures of my wound with now a lovely big circle of ink,not even a sterile surgical pen was used and to think how much the NHS bang on about cross contamination. The staff then left me from 2.30am until 8.15am without any fluids or pain relief until a sister who was from the new shift asked me my name and how long I had been lying in the corridor,on hearing my answer I was immediately taken to a side room and when she saw my wound her face said it all,I was dehydrated and left in agony she had called for a female doctor to attempt to put a venflon into my arm as the one that was in already when the previous doctor had taken my blood was blocked,as when she tried to flush it to administer morphine I cried with the pain,my veins had all collapsed and the lady doctor could only insert a blue venflon which is a very small narrow needle,hence her slowly inserting into my vein 1ml of morphine at a time until she had given me 5mls,my last hour at the Victoria Infirmary I was attended to by the 2 most compassionate human beings who could clearly see how the night staff had failed me,they leaned my wound and made me as comfortable as possible before the ambulance crew transferred me.I have been on a very scary ride this past 4 months and when I found this site I thought that I had RA turns out that's not the case I had strong positive ANAS but prior to my surgery I met a wonderful rheumy doc she did lots more tests there is a strong possibility I have arthritis but just not sure what yet so my recovery will be a slow one but I will get there and as for the shocking treatment I sent an e mail to Mr Alex Neil himself the Scottish Health Minister asking for him to investigate starting with my GP as I pointed out that I had self diagnosed my kidney cancer,then everything there on in to do with my treatment,so let us just wait and see if he will do his job and give me the justice I deserve,as we are always told to be grateful for our NHS.

[nomoreheels]

What a journey you've been on & thank goodness you're here to tell the tale in spite of such treatment from our wonderful, caring health system. I can fully relate to your awful experience in A&E many times over with my dad who also had cancer but sadly died prematurely in a hospital with many failings due to those failings. Thankfully you eventually received the treatment you needed but your journey has been a catalogue of errors hasn't it?

We have a Virgin Care centre opening close by & seriously considering seeing if we can transfer there. My f-i-l's heart nurse tells us that staff from the hospital we attend are leaving in their droves to work there & as I truly believe that the best way to get the most from people is from good leadership I believe we stand a better chance of receiving good healthcare from such places compared to what we receive now.

Anyway, little rant over, I hope you recover well from now on & receive some form of acknowledgement from Mr. Neil, which I'm very pleased you did by the way. Many don't when having had such poor treatment but if you can gather all you have to do it it's so worth it, experience speaking here!

Take care & keep us updated.

[marushka in reply to nomoreheels]

Hi N for your reply,i'm sorry to hear about your Dad, it must have been an awful journey for you to sit and watch,the repeated failings and no answers as to why,no justice and then the heart break of losing your Dad, it brings a lump to my throat just thinking about it,I am a very down to earth person but when I see with my own eyes or personally experience sub standard treatment from the NHS then without a single doubt I knew I would take this complaint to the highest level,our GP'S are meant to be our gateway to the specific medical treatment we need but if the GP fails you then this is a very sad day,in my case the GP and every single medical professional that has been involved in my primary care pre op and post op will be held accountable as this stems over 11 months so I think that many heads will roll and I have requested that the GP'S in question be struck off,so we will wait and see how Mr Alex Neil's investigation pans out.xxxM

[hatshepsut]

So glad you've had the op, it's nearly 4 years since my daughter had hers, so far so good. Fingers crossed!

However, I'm appalled at the neglect of your wound, and your dreadful treatment at the Victoria, Unfortunately, it's not the first time that hospital has been criticised, I do hope that you fared better at the Southern, and that you are now on the road to recovery. Well done for going to the top with your complaint!!!

Do keep in touch, and let us know how you are. Best wishes for a speedy recovery! M x

[marushka in reply to hatshepsut]

Hi H,hope all is well with yourself, I feel that I have been through hell and back and I do not want anyone else to suffer like I did, hence taking my complaint/concerns to the very top,to be fair the Southern General was a million times better than the Victoria Infirmary, but on saying that it's amazing what you see when you are bed ridden for many days, the cross contamination sadly starts off with the doctors and nurses,I being me stopped the 3 doctors who had crowded around my bed and when I pointed out that all of them had failed to use the hand gel which was attatched to every patient's bed they were all gob smacked to say the least as they knew it was true,so yeah me being me will be the voice for those who may not for whatever reason be able to stand up and speak out so that positive changes take place and soon.xxM

[Hidden]

What an awful time you've had really - I am so glad you have written to Alex Neil - a shocking story I hope you recover not only physically but from the awful time you've had with the NHS - starting with your GP. It is so horrible that we have to take the lead in our own health care so frequently. Heaven knows what happens to those who just can't for one reason or another. Tx

[marushka]

Hi Twitchytoes, thank you for your reply I hope all is well with you and your health, this morning I had to call the dreaded 111 the new number for NHS 24,they are a nightmare to say the least so my experience this morning will also be taken up with Alex Neil,as I called at 10.28am and the call handler was shocking to the extent his manager intervened 20 mins into the call, yet he was adamant he had to follow protocol and I had several more questions he needed me to answer, so could I just pick one of the answers and again I replied I did not know, bearing in mind I have a form of bi polar this was very distressing and I told him so,the more distressed I became I told him he was making me feel that I should just hang up as his lack of manners and telephone skills and he clearly lacked any sign of compassion or understanding he just kept telling me to calm down. 30 mins in total,and still I was asking to speak with a medically trained nurse or doctor,eventually I spoke with a nurse who told me she would send a doctor out to my home to see me,when the doctor arrived 45 mins later he told me that he believed my temperature keeps spiking due to my strong positive ANAS, aswell as being post op and coping with the wound being infected,he even took the time to go over all my meds that i'm on and recommended that I stop the tramadol as they are counter productive whilst taking oxynorm,so as it stands at present i'm on Diazepam 5mg 1x3 per day,oxnorm 5mg 1x every hour if needed, for break through pain ,I have a 20 microgram/hour butrans patch on my body which lasts for 7 days,trust me it does not work i'm still feeling high pain and that was them upped from 10 to 20,also taking 8 500mg paracetamol daily,iron tablets 1x3 per day and cyclizine 50mg 1x3 per day this is an amazing anti sickness drug I swear by this,so all in all it looks like my new rheumy is going to have to see me before my next appointment as bearing in mind I only got to meet her for the first time a week prior to my surgery so her dept sent me an appointment for next March 2015??? is it normal to be seen so far apart? to be fair she did take lots of blood samples from me and did tell me she would do all sorts of tests,but we both knew that the removal of the cancer from my kidney was the top priority,so maybe this is why she has given me such a far away appointment,on a happier note after my GP finding 2 lumps in my right breast and the ct scan showing what looked like scar tissue also on my right breast I attended the breast clinic on Wednesday this week,the female doctor was lovely,I braved it and had the mamagram done and was shocked but over the moon that nothing showed up it was completely clear,the doctor herself was pretty amazed too as she had been looking at the ct scan and the scar tissue was right there to be seen so I still say my prayers have been answered as I see it there is no other explanation as to this wonderful outcome,I am a survivor and this cancer will not beat me no way i'm too balshy for that to be the case,and when I read answers to my posts it means the world to me it really does,it's a true saying that some times it is easier to talk to a stranger than to some one who knows us,well I just feel very blessed that I found this website and joining was the best thing I have done for me,this is like therapy and great for my mental health as we all forget at times we are not machines we are not meant to cope with high levels of pain and stress,i'm sitting up in bed typing this reply and this is relaxing me,I may not realise at that very moment but it's true,so thank you for your kindness and taking the time to reply to me .xxxM

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[nomoreheels in reply to marushka]

For goodness sake M, how many times can they put you through unnecessary stress? I hope the on call doctor has set you right altering your pain meds. My GP has recently prescribed BuTrans for my OA pain & seeing her for a review in the morning. Her idea is gradually increasing the dose & though it has helped a little the dose as she suspected needs increasing so hopefully you'll get the relief from your increase that I'm also hoping for from mine.

Here in UK 6 monthly Rheumy appointments are the norm, with a recommended yearly review with a Specialist so your next one in March would be about right. I've still to get used to that as I had 3 monthly reviews with my Consultant whilst living abroad & was far better health wise for it as any problems were quickly picked up on & dealt with without bothering my GP who after all doesn't specialise in RD & related problems.

You must have been so relieved to have the all clear from your mammogram, especially now having worn that t shirt. I was recalled after my first one when I came back to the UK & the second showed the same images. Fortunately the biopsy was clear but the 2 weeks waiting for the results were long ones!

Hopefully your pain relief is kicking in & you're feeling a little more comfortable today.

[marushka in reply to nomoreheels]

Hi N,today has been a little better, still not totally on top of the pain but i'm getting there,hope all is good with you.

[nomoreheels in reply to marushka]

Not at my best but hope to get more on top of it too with the help of increase of drugs tomorrow lol!!! Thanks for asking though & hope you get more relief soon & a restful night.

[hatshepsut]

Oh dear, another unnecessary ordeal, I do feel for you. Being bolshie works for me too!

I'm not too bad, thanks for asking. I started humira 3 mths ago, having failed on rituximab and enbrel. Having a few rotten side effects, not sure if it's working for me, but fingers crossed!

I do hope that you have no more problems, and have a good convalescence. Keep in touch! M x

[marushka]

Hi H,thank's for the reply, I do hope your new meds work for you as it must be very hard on you having to endure the horrible side effects from the meds then be told you have to try new ones,I really do hope this time all goes well. xxM