Fri 08/02/08 (3 Weeks later)
Letter dated 07/02/08 received from Forth Park Hospital to invite me to attend Colposcopy clinic on Wed 13/02/08 following substantial abnormalities from smear test result (which I still had not received).
I Called in panic the above department and was reassured that this was a very common procedure and not to worry.
Sat 09/02/08
Received smear test result with a note that I will be contacted shortly by Forth Park Hospital, and a leaflet explaining the colposcopy procedure was also enclosed.
Wed 13/02/08
I attended my appointment. The appointment letter advised that my consultant will be Dr Pinion, the staff at the reception asked me to wait in waiting room until Dr Pinion is free.
But I was called by a different male Doctor. I advised the reception that I was not expecting anyone other than Dr Pinion and that I would prefer it was a female Doctor. I was kindly told no problems, and to go through with the nurses and assistant, they will start the procedure until Dr Pinion is free. This is what they did and I felt a little bit nervous after that incident.
When Dr Pinion carried out her examination, she immediately and quite brutally announced that she was very concerned and that she is almost certain that I have cancer. At this stage I was still on the “reclining chair in a very uncomfortable position and surrounded by strangers!” I don’t need to say anymore.
Dr Pinion eventually got me up and once I was “decent” again we sat around her desk. She started explaining all in detail, after a few minutes and on conclusion of her discussion she asked if someone was with me. I phoned my husband who was in the car park, he came through and it was explained all over again.
Dr Pinion advised that she will call me as soon as she has more information, when she has the analysis the biopsy.
Peter
I am driving around Forth Park Hospital car park looking for a space when Mano (Marie-Noelle) calls me. I can tell she is in distress and she asks me to come in to reception to meet her. I go in, she takes me into a room and introduces me to a Doctor Pinion. Dr Pinion comes straight out with it. I think she mentions all the terrors of cancer, all the words that no one ever wants to hear such as chemotherapy except she calls it drug treatment! I find that condescending and it angers me as I consider it to be used to hide what we are really looking at. “I know I am correct but the biopsy results will be in around Monday so call us if we don’t call you” she says. She mentions that she saw the cancer without even using any chemicals so she must be right. I hoped she was wrong and getting back to the car I say we had to hope and be positive it was nothing. Terror and hope are held in trying to act normally for the next few days. It will be nothing! But to be able to see the abnormality without even using dye makes me think that we must be looking at something in the latter stages and the internet which is all I have to refer to fuels my fears. I have to hide what I know and swear that everything will be alright.
Fri 15/02/08
A message was left on my home answer machine from Dr Pinion’s receptionist asking us to get in touch.
My husband called and was told at 16:40 if we could make it in before 5pm otherwise to call on Monday instead.
We could not possibly meet their requirement and we did not want to wait until Monday, so we asked Dr Pinion to deliver the diagnosis over the phone. She confirmed that I had cancer and that I needed a scan to verify if the disease has spread to other areas.
Dr Pinion could not advise when the scan will be but she confirmed that someone will call on Monday to advice. She also offered help of Jane McCafferty a support nurse but then realised that Jane was on holiday for a week and we can contact her on her return. According to the staff Dr Pinion did offer at that time to meet us on the Saturday Morning to go through all, face to face – but as you can appreciate she may have or may have not said this, my husband and I where in shock and had to hide all emotions etc as our 13 year old daughter was in the room next door….
Peter
We went out for a drive to try to pass the day. I promise Mano that it will be nothing and everything will be fine. Arriving home about 4.40 there is an answer phone message from Dr Pinion’s receptionist to call them. I know immediately what that means but on an answer machine! I say I will call and Mano afraid leaves the room. I can’t dial the numbers because I am shaking so much.
The receptionist implies it is bad news but Dr Pinion will not speak to me only Mrs Falconer or we can come in sometime on Monday if we cannot make it there by 5pm! I beg her to get the Dr Pinion to speak to Mrs Falconer. How can anyone just go home leaving us with no advice, no information, and no support. She tells me this news and then in the same breathe that they close at 5.
The receptionist gets Dr Pinion and we both listen on the one phone with difficulty, as she hurries through the diagnosis. The Doctor says they need an MRI scan to know the extent and she has sent the paper work off for that urgently. Why can’t we get a scan now I ask is this is very serious or not? They are closed at the weekend and open 9 to 5. She gives me a number I can call on Saturday if we have further questions. I think she says we can come in the next day but without a scan what’s the point? No support other than that is offered. We act “normally”, we cannot let Anais know yet, we can’t give her the little information we have. I could not then and cannot now believe the barbaric way this was handled and the flippant way we were got rid of because the weekend had arrived. I know we are fighting a disease AND the inherent pass the buck or blame resources attitude that appears to exist in the NHS these days. We are left for the weekend to experience a special NHS brand of terror.
Saturday 16/02
Mano takes Anais to the shops. I feel helpless and I need some answers so I can prepare myself and Anais for what might follow. I don’t like what I see on the internet, this can’t be right. I call the number I have and it rings for 20 minutes with no answer. I call the switch board number and ask for the 2 extension numbers I have for that department. They both ring for 15 minutes. I call again and beg them to get someone in the hospital, I can’t believe it there is no one to talk to they really are shut and the number they gave me must be someone on call who can’t be bothered! They have told us my wife has cancer and they are off at the weekend and work 9 to 5. My god I think it is true after all and I never believed all the horror stories about the NHS. The receptionist gets someone from the maternity ward in the same building to talk to me!! She promises to get the file and call me back. She calls back later and says that she has spoken to Dr Pinion who will not talk to me and that we should come in on Monday both of us. If I have personal non confidential concerns I can write them down and hand them over! I think surely the MRI will be Monday and we can get answers with the information needed. I thought we would be contacted then to come in. I am extremely angry that they seem to treat the whole thing with a calm detachment. My worst fears seem correct we are getting no support what so ever. My only source of information is the internet.
Mon 18/02/08
By lunch time no one had phoned our house as promised, after an agonising week end, yet again I felt let down and felt very much in the dark. So I decided to phone and speak to Dr Pinion but I could not get past her receptionist and her staff could not help me other than advise that I should get a scan within the next 2 weeks and a letter would follow!!!
My husband later on called again to try and get some answers and some support but again no one could help or even return our phone calls.
Peter
Mano advises me she has been told we will get a letter to go for an MRI scan at some point in the next 2 weeks or so. They didn’t even tell us there would be a wait. I try calling several times but get nowhere. I cannot believe it my wife has cancer and they are treating it like a toothache. The nightmare stories I have seen before in the papers are true and all the web pages I have read with statistics about being the worst at treating cancer in the western world come to mind. I realise I now have to fight to save my wife’s life. If I have to I will take her home to France. I phone several times that day and Dr Pinion will not talk to me and passes messages telling me she will not talk to me. They say they will chase the MRI scan but no one there is calling them back. I want details of how I can pay for a scan and where but receive no answers other than arrange to meet my own GP to seek a referral. I call the Fife Health Board chief executive as I am desperate and speak to his secretary who arranges a meeting. I say if the NHS fail us then they have failed everyone and no longer serve the purpose for which they were set up. The first understanding ear so far. Maybe they do care.
Tue 19/02/08
We had a chat with Dr Pinion and several NHS employees, we were told the scan will take place next Tuesday and a meeting with the surgeon that will treat me will take place on the following Thursday in Edinburgh.
Dr Pinion gave me a booklet regarding cervical cancer.
Peter
We meet with Dr Pinion, Nurse Yvonne McKenna, a patient relations person (Mrs Graham I think) and Dr Pinion’s receptionist. It feels a little like an attempt to bully me. They say they are doing their best and that Marie-Noelle is in the best hands. It’s basically just tough about waiting for an MRI scan but they have arranged it for a week’s time which is within the time limits (Just). Once the support nurse Jane McCafferty is back from holiday we will get more support. I ask them to promise categorically to me that apart from the MRI scan Marie-Noelle will get everything she needs when she needs it and we will not be told excuses again about resources, queues and delays. I ask them to “Promise me that or I will take her back to France right now or somehow get the money to go private” They made their promises to me and at the time I actually felt immensely relieved. They had all agreed that 2 weeks for the MRI scan was too long but resources queues etc are an issue however once referred to Edinburgh everything will be very quick and we will get the treatment without delays. I am told we are even lucky that it has also been arranged on the following Thursday the MRI scan, biopsy and all other data will be discussed at the meeting held between all the regional specialists by video conference. We will then be given an opportunity to meet with the consultant and agree the treatment as they will have everything they need then. They make me apologise to the receptionists which I do as they are not to blame after all. At last some progress I think. I welcome the few days to the MRI as a respite. Maybe I can trust them after all. The Chief Executive did not make an appearance.
Mon 25/02/08
Nurse Jane McCafferty is back at work, and my husband called her to try and get more clarification on the MRI scan.
When he spoke to Jane she got confused with another patient
When I asked Jane to make sure that the scan will get there in time for our big Thursday meeting she said that she will try her best!!!
Jane did not have a clue about my case, she was not aware that I was yet to get a scan, she was not aware that the all point for me to have this scan it will enable the specialists to discuss treatment 2 days later during our meeting, she admitted not to have looked at my file, her excuse was that she is just back from holiday!
I can assure you that my stress level were at the top, my faith in these people was very low.
Peter
Mano is stressed by her contact with our specialist support Nurse. I call her but she seems to think that I am someone else and she has not read the file yet. We clear up the confusion and agree that she will join us at the Edinburgh meeting. Every little bit of contact is now setting off alarm bells. I need to keep Mano positive but protect her. We still have no outside support and until I know the full prognosis I can’t tell anyone else.
Tuesday 26/02/08
I had the scan in the morning and went home.
As I did not have confirmation about the Edinburgh meeting on Thursday 28th, again I called Jane McCafferty to ask her for more information, i.e. what time we were to attend and place etc.., Jane confirmed that our meeting was at 11:30am but to leave early as parking can be difficult and that all was in the post.
Peter
My only source of information is the internet and I have promised Mano I will research the treatments so she did not have to face the worst scenario descriptions these sites tend to dwell on. This is tough though.
Wednesday 27/02/08
Received info pack from above and appointment in Edinburgh is AT 10;30 AND NOT 11:30AM !! Again my faith is sinking.
Peter
I think Jane McCafferty struggles as much as we do to get proper information so I am not worried but Mano is concerned about the time mix up.
Thursday 28/02/08
On our way to Western General Hospital we got a phone call from Jane at 09:30 “she must have just realised that she made a mistake with the time” she was checking if we were on our way and she announce that if we could get there asap the Dr will see us straight away and it is good news, they can operate….
Arriving at the hospital was a fiasco for parking, we got a parking ticket and nearly got towed away while discussing my possible treatment..
During our meeting we were advised not openly as we had to ask and find out that the scan from fife did not make it to Edinburgh The Doctor referring to the fife radiologist “thinks the Fife one is not as good as the one in Edinburgh – VERY reassuring…” anyway the radiologist from Edinburgh is not here today so information is missing but we can look at it later.
Dr Martin advises to be absolutely certain of the stage he would need to carryout an examination and it will be probably next Thursday/Friday – ANOTHER WEEK!! But he will phone us personally to advise, Dr Martin asked for all our contact numbers
Jane McCafferty advised that she will post me an info pack regarding all treatment discussed.
I was pleased about one thing, Dr Martin seemed good and in some ways reassured me.
Sadly 15 days later AND STILL I DON’T KNOW ANYTHING about the disease and still am having to lie to my daughter.
Peter
On the road Nurse McCafferty calls and says good news they will see us early and it’s good news they can cure this by surgery. I know immediately why the call was made but I tell Mano she is being paranoid about the motives of the call. As you see we now trust no one but I will leave it to you to reach your own conclusions regarding this incident. The Surgeon Dr Martin seems switched on and reassures me although it is clear that he has not actually seen the MRI scan. I question him and he admits this so I ask to see notes on the verbal report. He explains possible treatments and they still sound horrendous. The chances of developing side effects such as swollen legs, incontinence, hair falling out etc. etc. are given as percentages. I stress this is peoples lives we are talking about and active busy ones with life plans and goals. He agrees with my opinion that surgical methods have not developed a lot in 100 years but treatment has. He needs to conduct a full examination under anaesthesia which can be done next Thursday. He will call Monday to confirm the details. He takes my mobile and home numbers. Mano is devastated we are still not certain of the stage of the cancer.
Unbelievably I have to leave during the meeting to move my car but the security staff at the hospital are excellent unlike the warden. The staff nurse is incensed and the warden was closer to becoming admitted himself than he will ever know.
Friday 29/02/08
I called Jane McCafferty to advise her that I haven’t heard from Dr Cameron Martin and she advised that he will not know till Monday
Monday 03/03/08
12:30pm not heard a thing, I called Jane to see if she could help, she was going to contact Dr and get back to me.
17:10 not heard a thing, my husband phoned Jane and she advised that it will be Thursday admission and Friday operation.
Peter
No phone call from Doctor Martin but we are sure it’s Thursday so I am not too worried. I find Maggie’s trust on the net and call them. They are very reassuring but critical of the NHS – I arrange to meet them. I call Jane McCafferty and tell her we don’t have a firm date. She calls back it is on Friday not Thursday.
Wednesday 05/03/08
My husband & I went to visit Maggie’s Centre in Kirkcaldy – since our ordeal this is the First time we could speak to someone who is willing to listen and help- this step was done following our own search – no one at forth park or Edinburgh advised us what we should do.
In addition to all this, we could not speak to anyone close, because we could not tell our 13 year old daughter anything until we knew our self the situation.
Today I finally received the famous info pack discussed nearly a week ago at our meeting – Joke!
Peter
Information and an understanding ear at last not from the NHS though. Lorna at the Western Hospital calls and asks if we can get in for 12 for Dr Cowies 1.30 ward round. I think it’s early but want to make sure I see the doctor too.
Thursday 06/03/08
Very sad that I had to tell my daughter I will see her tomorrow as I am going on a night out …..
Got admitted at the WGH, a very depressing place, however we were told to come in before 1pm as the Dr wanted to see me during his round between 1 & 2pm, (which we were glad off, that way this meant my husband would be back home in time for our daughter returning from school)
This did not happen, my husband had to leave at 14:45 and doctor came round at 16:00 approx?
It was a Dr Cowie? I got confused as I thought Dr Martin was to see me and disappointed as I have now put my life in someone else hands, anyhow I stressed out to staff and Dr that I do not want to leave this hospital tomorrow without knowing exactly how far is the disease and what cure will I receive.
Dr Cowie assured me that I will be the 1st patient to go to theatre and she will come round tomorrow afternoon after 12 to advise all and that I will be away early pm & will be back home early enough for my daughter coming back home.
Peter
I take Mano to ward 2 at the cancer centre. Everyone is so much older and seem to stare at us. We are in a ward full of terminal patients and older patients. The walls are full of adverts for wigs and the conditions are poor with 8 to a WC. I am worried that Mano will be terrified but as usual she is too strong to show it. The staff are very good here but the doctors seem almost untraceable. I ask for reassurance that we will discuss the examination tomorrow and not have another weekend not knowing. I stress that please tell us if we are going to be let down now but we are reassured.
I go home for our daughter at 3pm as there is no sign yet of the Doctor. I tell the nurse that I am upset about being told to get into the hospital so early and that we are being asked to give up our family lives to accommodate Doctors who may or may not turn up when expected. I ask for reassurance that we will discuss the examination tomorrow and not have another weekend not knowing. I can read situations and know immediately that we are going to be disappointed I stress that please tell us if we are going to be let down again now but I am explicitly reassured.
Friday 07/03/08
At last something is going to plan – got in theatre 1st and came out ok !
At 11:50 while I was getting ready to go home and waiting for the Dr to come round, The nurse/Sister came round, she sat down & told me, Dr Martin cant come round (CONFUSION AGAIN I though Dr Cowie examined me ??!) because he is back to the Royal infirmary because he has some surgeries on but he advised that you can get an hysterectomy and the date will be beginning of April !!!!!! and you will get a letter to confirm this !!
I asked her why not sooner? Don’t know
I asked her what type of hysterectomy? Don’t know
She eventually managed to arrange a meeting for yet again another week NEXT THURSDAY with Dr Martin.
I could not believe this, I am not being treated like a human being, another month!! No one to answer any of my questions, this is not acceptable, what hope do I have??? This is a nightmare!! It is difficult to deal with the fact that I have cancer BUT THIS Additional stress is not necessary.
WHY THIS CONSTANT DECEPTION FROM NHS STAFF? WHY ME I AM A YOUNG WOMAN, I HAVE CONTRIBUTED TO NHS TAX PAYMENT, I DON’T DESERVE THIS NOR MY HUSBAND AND DAUGHTER.
PLEASE I AM BEGGING YOU TO HELP BEFORE THE DISEASE GETS WORSE AS I HAVE BEEN TOLD IT COULD HAPPEN AND IF IT DOES I WILL NOT GET THE TREATMENT CHOSEN AND IT WILL BE EVEN HARDER TO CURE…. IF I GET THE OPERATION SOONER I AM ALMOST GARANTEED A FULL RECOVERY
Peter
I arrive at the Western ward 2 at 12.00. Mano is getting dressed and is afraid to tell me what has just happened. I talk to the staff Nurse who apologises but all she can do is get Doctor Martin to call us or if we can wait a few hours perhaps Dr Cowie will come but the examination was done by Dr Martin in any case. This is the final straw and I feel unable to hide my fear to Mano, I think they are going to fail us tragically.
Doctor Martin calls after 6 and explains that he left full details with Dr Cowie to speak to us. He advises what he found and that he could only arrange a surgery appointment for the 3rd April which he thinks is too distant for psychological and physical reasons. I ask don’t we get a chance to discuss treatment options first and he makes an appointment for next Thursday but urges us to try to get an earlier date for the operation. Apparently all I can do is contact Patient relations at Fife and Lothian. I am now very worried this is going to be yet more stress. He cannot guarantee the date made available would not lead to further spread of the disease and the consequences of that. I can’t believe this is happening to us not a thing has gone smoothly. I call our support nurse who says “What am I supposed to do” - this is our last contact with her so we have no support nurse at all now.
Saturday 08/03/08
One of the hardest things I ever had to do in my life – (3 weeks on) We have told our daughter the truth and we promised her that I will get cured.
Peter
What can I say? At least we aren’t whispering anymore.
Monday, 10 March 2008
Peter
Mano has gone to the GP for something to calm her nerves. I call Patient relations in Fife and Lothian. I speak to Louise Ewing and Pamela Swanson. They both phone back and are trying to contact Dr Martin. They seem interested and willing to help. Let’s hope this is things falling into place at last. Fingers crossed. I am worried about the business which I have not been able to concentrate on for a month now. I hope that this is the last entry in this diary.
Sadly it is not it is 11.15pm and of course another sleepless night is in store for me. No one has called us at all. We are supposed to be the life blood of Scotland. I pay high rate tax, my wife works, we are law abiding but we can see clearly now what we mean to Scotland. I know all about the corruption that exists here as I have experienced it first hand before as a victim but the glaring social divide is obvious and highlighted when you become ill. I am embarrassed to be Scottish and I will face Mano’s family in France and have to admit this country is a cesspit of corruption and social divide I let them down by trusting one of theirs to Scotland and the health service.
Tuesday, 11th March 2008
Peter
I do as Dr Cameron suggests and submit complaints to Fife and Lothian NHS because who should deal with it? I don’t know both maybe? I also send them this diary up to this entry. I copy in by email the following luminaries of our great Scottish parliament the letters below and this diary requesting automated delivery receipts.
Helen.Eadie.msp@scottish.parliament.uk
Alex.Salmond.msp@scottish.parliament.uk
Nicola.Sturgeon.msp@scottish.parliament.uk
scottish.ministers@scotland.gsi.gov.uk
Richard.Simpson.msp@scottish.parliament.uk ministerforpublichealth@scotland.gsi.gov.uk
John.Park.msp@scottish.parliament.uk
patientrelations.fife@nhs.net
FirstMinister@scotland.gsi.gov.uk
Pamela.a.swanson@luht.nhs.scot.uk
louise.ewing@faht.scot.nhs.uk
pamela.a.swanson@luht.scot.nhs.uk'
