Kirsty

8th May 2010:
The pain in my back has been really bad and my back brace is too small for me now, mum phoned the hospital to book an appointment for a new casting, but I can't go until the 9th June, I will just have to slim down. The trouble is, even after I have been for the casting for my back brace I still have to wait about four weeks for it to come back and even then it takes a couple of visits before I get the brace. The good news is I will have it before I go away.

13th May 2010:
I spent most the morning at hospital today having my pre’ op’ check in preparation for the operation on my knees. It looks like my operation will take place late June or early July as I am going away in September for two weeks and the nurse who did my pre’ op’ check said I will not be able to fly for up to six weeks after my operation, this could be even longer with me having both my knees done at the same time. She is going to phone me when she has spoken to the doctor who is doing the surgery. I was expecting to have a blood test so my mum put some emile cream (magic cream) on my arm, when I went in to see the nurse she never mentioned the blood test this and I was not going to remind her. She had been told that I don’t like needles and said that they will make sure they have some of the magic cream to put on my arm on the day I come into hospital for my operation. My blood pressure and everything else was ok, just have to keep my fingers crossed now that I am not still carrying the MRSA bug.
I was very unwell on the way to the hospital and kept being sick, I’ll be glad when I have had this gastric study done and maybe they can put me on the correct medication, which will help with this sickness.

When I got home a letter had come for me from Buckingham Palace, when I opened it, inside was an invite to the Queens Garden Party on the 22^nd June for both my mum and me. So I have got something nice to look forward to. The letter states that we must wear a dress and a hat and unfortunately we cannot take any pictures as they will not let you take your camera in to the grounds of the Palace. But I will tell you all about it on my return.

28th May 2010:
I received a phone call from the hospital last week to say that my op' will have to be put back yet again as I am still carrying the MRSA bug, I am back on treatment for three weeks. They cannot do the op' while I am carrying the MRSA bug as if this infection got into my blood stream it could be very dangerous.
The tumour on my arm has grown again and I have received an appointment to see the surgeon on the
17th June (the day after my grans Birthday). I should of seen him on the 27th May but I have got other things on that day. I have a busy few weeks with hospital appointment in June so will let you know how things go.

Things are still the same with the sickness, I have not had any news about the gastric emptying study yet, but these things take time so I will just sit and wait for the letter to pop through my letterbox.

2nd June 2010:
I went for my first swab this morning to see if I am still carrying the MRSA bug, I won't get the results for a few days, Mary, my nurse asked me to come back next Monday for my next one as I have got to have three clear swabs before I can have the op' on my knees.
No other news really, things are still the same with the pain in my back and the sickness, but I am doing ok and getting on with the things. I have just had a load of wristbands made for my charity so when you get time take a look on my Items for sale link and see if you would like to buy one from me, every penny from the sale of my wristbands goes to When You Wish upon a Star. towards my target.

25th May 2010:
I have now finished university for the summer, and I sat my last exam today. I was not over keen on this exam if I am being honest. I will get my grades in July sometime; I will let you know what I got. I am now looking at what I can do over the summer to keep me busy, with charity and hobbies. I am in hope soon to start selling my silicone wristbands for the charity and I am hoping to go to my local Asda store and standing with the wish mascot “Titch” and selling the wristbands along with some pin badges one weekend.

I know I am due an operation over the summer too, but I keep failing my pre op, but hopefully I will pass it soon and I can have the op’ before I go on holiday with my mum and dad.

10^th June 2010:
Today I went along to meet Mrs Kirsty Craig in Chester. This is because not so long ago, I won a business connection award and Santander Community Award. This was because the style of work that I have been doing and the skills I have used are to a business standard. And due to do doing a lot of community work I was awarded the Santander award. I was unable to go to the event on the Friday. This was because I was in Ireland at the time. So I met Kirsty on the Friday. Please see the picture below of me reserving the business connection. I was happy and honoured to reserve both of these awards, and I was happy to get the £500 which is going to the charity when you wish upon a star.

Receiving my award

Handing over the cheque for £500.00 to Wish

13th June 2010:
I went for my casting for my new back brace last Wednesday as my other one is too small. You should of seen the outfit that Paul and Keith (the guys doing the casting for my brace) made for me, they put two white stockings over my body and one on my head to keep my hair out of the way, I looked like a Mummy from a horror film. My mum took some pictures on her phone so I will try and get them on my site for you. They then wrapped me in plaster cast to get the correct mould for my brace. I have decided to go for a white brace this time much to the disappointment of Keith and Paul, they wanted me to have one with teddies on it, which they nearly talked me into.
Unfortunately my new brace will not be ready in time for me to travel to the Queens Garden Party so I will have to hope they let me into Buckingham Palace with all my pain killing tablets lol.

23^rd June 2010:
last week I went to see plastic surgeon over the tumour in my arm, the doctor looked at my arm and agreed that it would be best to remove the tumour in my arm as it is growing, he also looked at some of the tumours that are just under the skin in my tummy and back, which are giving me some pain due to the band on my trousers pressing on them, he is also going to remove them at the same time. He was going to do the op’ under a local anaesthetic but because I have a phobia of needles he is going to do the op’ under a general anaesthetic. The op’ should be done before I go away in September.

I have now had two clear swabs from my MRSA bug and I had my 3^rd swab taken last Monday, I just need that one to be clear too and then the doctor can make arrangements to do the op’ on my knees.

I have got the date for my gastro test, my first one is on Wednesday 21^st July, I have got to attend the Neurogastroenterology unit. I am having hydrogen breath test, which is to investigate whether there is a bacterial overgrowth in the small intestines. I have got to drink a glucose solution and then give breath samples at ten minute intervals, by blowing into tube. The test will take about three and half hours to do. I just hope I can keep the solution down as the sickness is really bad at the moment.

My second test is on the 27^th July in the same unit and is called a lactose intolerance test, this test involves me drinking a glass of sweet liquid (lactose) after which I have got to blow into a tube every 30 minutes to collect samples of my breath. This test will take 4 hours 30 minutes. I have then got to make an appointment with Dr Watts to get results.

24th June 2010:
I went to see Dr I Lieberman this morning at the pain clinic, I had to wear my old back brace as my back is really giving me some pain at the moment. Dr. Lieberman is arranging for me to have another spinal scan using the contrast dye and I go back and see him in six months.

I should get my new back brace on the 7^th July, which will help the pain in my back.

Take a look at my fun things that I get up to to read how my visit to the Queens Garden Party went and to see some pictures.

10th July 2010:
I went for my new back brace but it needed some more work doing on it so I have got to go back on the 28th July when it will finished, Keith did want me back sooner but I have got so any hospital visits over this next three weeks it'd really difficult for me to fit in.

The sickness as been really bad too so the sooner I have these other test the better, then maybe I can start on some treatment that will help with the sickness.

1^st August 2010:
The last few weeks have been pretty busy with one thing or another. I have been back and to for hospital appointments and test.

I have now got my new back brace, which is much better than my last one, Keith and Paul did a good job this time (the guys who measure me for the back brace).

I have had both my breath test, one was to see if I was lactose intolerance and the other was to see if I had a bacterial overgrowth, can’t say I enjoyed the stuff that I had to drink for any of the test. I was a little sick after the first test but was able to carry on with the test and I am pleased to say both test came back clear. The sickness is no better and I still continue to be sick almost everyday. I am back to see Dr Watts at the end of August when I will find out what happens next.

I received a letter off Dr S Huson who has now received the results of my Dyslexic test. Dr S Huson wants to see both my mum and me at the end of August to chat about how our health is doing.

My mum phoned the hospital last week to try and find out what was happening about the operation on my knees as I have now had three clear results from the MRSA bug that I had and the operation on my knees can now go ahead. Unfortunately the doctor as now said that I cannot have the op’ on my knees before I go away as I will not be able to fly for six weeks after surgery, mum told him that she was told it was only two weeks but the doctor said because I was having both knees done that it would be six weeks before he would allow me to fly due to the risk of me getting a blood clot. He is now looking at doing it in September, which is a bit of pain as I start back at Uni’ then, we will just have to see how things go I suppose.

It does not look a so the operation on my arm and tummy will take place until after I get back from holiday either for the same reason’s but I will know more about that op’ next week after my has spoken with the doctor who is doing the op’.

I also went for the scan on my spine last week as the pain is getting worse, I was told that I would be having a needle, which I was not happy about, mum got a tube of magic cream for me so that the needle would not hurt, when I went in for the scan and I mentioned how scared I was of injection the doctor doing the scan decided he would not use the dye which meant I got away with having the injection.

There as been a delay on my book as I have been asked to resend it in PDF format, which is now going to take me a bit of time to do as I can only sit at the PC for a sort time before my back starts to hurt.

Also please don’t forget to visit my what’s for sale link as I have some great items for sale with every penny going to towards granting a wish for a poorly child who has a life threatening condition. Please help me to raise enough money to send a group of 30/40 poorly children on a five day holiday with their families while they can still enjoy some quality time spent together. You can also make a donation on my just giving link, which is safe and secure. The address where to send to can be found on the what’s for sale link too. “Thank You”

9th August 2010:
I have got a very exciting item that I am going to be putting up for auction very soon, but as it will be also being auctioned by the press please come back next week for more details. thank you.

29^th August 2010:
I went to see Dr. Watts last week, Dr. Watts is the doctor that I see for my gastroparesis, I have not seen Dr. Watts since I was in hospital as I normally see one of her registrar’s, anyway Dr Watts was really nice and we had a chat about how things had been going over the past few months and she gave me the results of both my last breath test, which had both come back clear. So I am not allergic to milk and I don’t have an infection in stomach.

After telling Dr. Watts how my sickness had been she said that it was important that I came into hospital when the sickness gets really bad, I told her that I felt silly coming into a busy A/E department just with sickness when there are people who are bleeding to death sat in the waiting room.

Dr. Watts said that it was very important that I did come into hospital as if I got too dehydrated it could be very dangerous for me with my condition and that if it made me feel any better that she would write a letter for me saying that I suffer from a severe form of gastroparesis and that she (Dr. Watts) as asked me to come into A/E department when the sickness gets bad and that she must be informed that I am in the hospital.
Dr Watts is going to send the letter to me for me to keep. I have got to go back and see her in three months.

I also saw Dr. Sue Huson this week, if you remember Dr. Huson is my NF doctor and as I had not seen her for a while she said that she needed to see both my mum and me. We were running late like normal due to my transport being late, which was not the drivers fault, I am really grateful that they take me to all my hospital appointments.

Dr. Huson gave both my mum and I a good medical, mum had a couple of tumours that were giving her some pain and she going to see if they can be removed. Mum also baffled
Dr. Huson as to why her lips were so blue, Dr. Huson admitted that it was a new one her. So if anyone else with NF gets blue lips please let me know.

My medical went ok, the weakness in my feet were no better and Dr. Huson said that it was important that I was kept an eye on every six months due to how my NF as affected things.

I had no new problems with my NF so I don’t have to go back for another six months now.

I hope to give you a date for when my book is on sale, which should be very soon now, so please keep bobbing back to find out the date “thank you”.

21st September 2010:
I am now home after having two weeks away with my parents, which you can read more about on the fun things that I get up to link.
Unfortunately I still had a few bouts of being sick and it was a case that I carried a paper bag around with me, I still had a nice time while I was away but unfortunately I took poorly on the flight home, the stewards asked over the speaker if anyone with medical knowledge was on the flight, a nurse came forward, I was put on oxygen for the rest of the flight home and given aspirin to thin my blood. The pilot asked to be kept informed as he was going to divert to the nearest airport so that I could be taken off the flight and taken to hospital but I was ok, they arranged for the flight to be met by a paramedic who came on board the flight and carried out my observations he then rang for an ambulance to meet the flight and take me to hospital, my mum came with me in the ambulance. I spent the rest of the day in hospital with my mum and dad by my side. I am much better now, they think that I may have had a blood clot but they are not sure. I will tell more of what happened when I am not so tired as I am busy getting ready for going back to Uni' and working on my next Charity event at the moment.

I have now got the letter off Dr. Watts to take with me to hospital when my sickness gets really bad, I just hope I never need to use it.

11th October 2010:
I have now got the dates for the two operations that I need doing, the first one will be done on the 23rd October, which is on a Saturday, this operation will involve me having five to six tumours removed. the second operation will take place on the 22nd November when I will have an operation on both my knees. The operation will be done by keyhole surgery and I have been told it will take eight to twelve weeks to recover from the surgery.

I have got to go for my pre-operative assessment on the 22nd October to make sure I am not still carrying the MRSA bug, if I am, the operation will not be able to go ahead.

No real change with the sickness, I have my good days and then I have some bad days when I am not able to keep anything down. On the 16th October I have got to go to the Children's Hospital for a full body scan, David is going to come with me for this scan, I just hope I don't have to have any needles. I will let you know when I get the results back from the scan and how things went with both my operations as soon as I can. But in between my operations I have arranged a charity spookathon on the 6th November where I will be staying in an haunted place over night. Many of my ambulance drivers and other people involved in my medical care will doing the event with me along with Danny Morris who was one of the x-factor finalist when he was part of the boy band Eton Road, Danny is now a solo artist and continues to support me at my events. I also hope to have a special guest joining me at the event.

If you would like to sponsor me for this event you can do so on my just giving link, my just giving link is a very secure way of making a donation.

17th October 2010:
I am at hospital on Thursday for my pre op' check, which is to make sure I am ok to have my operation on Saturday. On this first operation the doctor will try and remove five tumours that are giving me some pain and on Friday I have got to go for another pre op', which is to make sure I am ok for my knee operation on the 22nd November. My mum said she will update my web page while I am in hospital so you all know how things are going. All being well I should only be in hospital overnight for this first operation.

I also went for my full body scan yesterday (Saturday), David my boyfriend came with me. The scan took just over an hour and this time it really hurt my back to keep still for so long. I have got to wait to see Dr. S Huson now for the results.

My spook night is now full and I am now looking for people to sponsor the event, which can be done on my just giving link which is a very secure way of making a donation.

5th November 2010:
I have not got the results back from my scan yet I am still waiting to hear back from Dr. Huson, I have asked my mum to email her for me.
The operation I had to remove the tumours went ok, my boyfriend David came down to support me through this, as he knows I am quiet scared, mainly of the needles if I am honest. When I was on the ward the nurse did the basic checks. After a few hours I was taken down to the theatre for the operation, my mummy and David came down with me but my mummy was not allowed in as I taken David in with me. He was there through everything and held my hand when I had my needles, when they tried to the needle in the first time it popped my vain, and it really hurt. They eventually found a vain and got the canola in. David was sent out of the room, and I don’t remember much more until I woke up in recovery.

I was in a bit of pain after the operation. The doctor injected some more local anisetic into my wounds to help take the pain away. The doctor said that the tumour in my leg had grown into the muscles of the leg and was more difficult to remove, the tumour in my arm had also grown into the muscle and again was more difficult to remove.

I was left very badly bruised after this surgery as you can see below; I have not put all the pictures on as they are even worse than this. When Miss Brains did my surgery she never bruised me. Don't think ill let this guy do anymore surgery on me.

I received a call this week from the Manchester Royal Infirmary to say that the surgery on my knees has been put back yet again due to me still having a positive MRSA test when I went for my Pre operative check. My mum rang the hospital to say that I recently had three swabs done at my GP surgery and one at my local hospital the day before and they had all come back negative, the hospital are now looking at the test results again, my mum has got to ring the hospital again next week after the surgeon has looked at the results.

I have got my charity Spookathon tomorrow night, which I am really looking forward to, if you would like to sponsor me for this event please do so by clicking on my just giving link which is a very secure way of making a donation, Thank You.

I have not been to good with the sickness this past week as I have not been able to keep any fluid down.

12^th November 2010:
I have still not got a date for my knee operation and until this puzzle about the MRSA bug I will not be given one.

I had to go to A/E yesterday as the sickness had got really bad again and I had not been able to keep anything done for days. I was given an anti sickness injection, a bag of IV fluid and allowed to go home later in the day. I have been a little better today but I have not had much fluid as I don’t want to start being sick again.

23rd November 2010:
A few weeks on from my recent surgery, the area’s that had been operated on was still hurting, I had the stitches hanging out and I kept catching them on my clothes. So in the end I decided to pull them out with scissors. It really hurt but it felt much better after I had removed the stitches and I have made better recovery, the skin can now grow back better and not go lumpy. I am still getting some pain a month later but I am ok. I go back to see the doctor in December.

I went for another MRSA swab yesterday and I am now waiting on the results so the hospital can book a new date for my surgery to the knees.

I went for my first lot of Hypno’ therapy yesterday to see if it will help with the sickness, last night I was very sick again but it is very early days and I am just keeping fingers crossed that it works.

16^th December 2010:
A few weeks on from my Hypno’ therapy and I am not finding any results as yet, but I have still got a few more weeks to go so I am still keeping my fingers crossed that it will help.

The pain in my back has been really bad and I have had to wear my back brace while doing my voluntary work in the school.

The last results that I had for my MRSA showed that I still have the MRSA bug and that it’s the swab that they do up my nose that keeps coming back positive, I am now waiting to find out if the surgery on my knees can still be done while I have the MRSA bug.

I have been in so much pain with the tumour to the back of my knee that I have been reduced to tears, which is not like me.

I went to the hospital this afternoon to see the plastic surgeon that did my recent operation to remove some tumours as he was not in I saw he his reg’, she was pleased with how my surgery went and like normal you spend hours waiting to go in and see the doctor and then when you do you spend two min’s with the doctor. I mentioned about the tumour on the back of my leg growing and giving me a lot of pain and she he is going to mention it to Dr. Khane and has booked me in to have surgery in the New Year.

When I arrived home I had a letter from Hope Hospital saying Mr. N Oxborrow wanted to see me on Monday the 20^th December 2010. I was meant to be going for my Hypnotherapy but as it’s not helping my sickness I have cancelled the hypno’ appointment. I have been in so much pain with my back and I have got a few important questions I want to ask Mr. N Oxborrow. I have not seen Mr. Oxborrow for ages, he had an accident with his wrist and needed an operation so was off work for a long time, but it’s nice to know he is back in work. I have got the weekend to try and find something for his dog, I always get something for his dog when I go and see him.

21^st December 2010:
My appointment with my spinal doctor (Mr. N Oxborrow) went well yesterday, while I was waiting to see him I decided to write a message on his white board, I just wrote:
To Mr. N Oxborrow wishing you a very Merry Christmas and a Happy New Year from your number one. Everyone that came in read it and started laughing, I’m pleased my message cheered people up. I told Mr. Oxborrow I had written a message on his white board and he went out to read it and even he came back with a smile on his face.

Anyway back to my appointment.
Mr. Oxborrow showed me the x-ray’s that were taken last year, which showed no progression of the small degree of proximal junctional kyphosis. Mr. Oxborrow said I was reviewed at there x-ray meeting and it was felt that surgery was probably not the way ahead at the moment. Mr. Oxborrow and I agreed to simply observe my spine for the time being. The plan now is to see Mr. Oxborrow in nine months with a further x-ray on arrival if things have got any worse at this time I may have to re think about having the surgery.

But this would be a very big operation with no guarantee of it helping with the pain. If I get to the point that I can’t cope with the pain he will look at things again,

Both my boyfriend (David) and I wanted to know when we decide to have children will I be able to have a normal pregnancy and delivery or will the titanium rods make a difference to how things go.

Mr. Oxborrow said that I would be able to have a normal pregnancy, but I may find my back is more painful, which is not uncommon for any woman having children, he did not think that I should have any problems carrying a baby to full terms. He did say that he was unsure about me having an epidural due to the tumours on the spine. He did not think the pain killing tablets that I am on would be safe to take during pregnancy. If when I am ready to start a family and my back does worsen I can always elect to have my delivery by caesarean section to prevent more strain on my back.

After our chat we wished each other a Merry Christmas and I asked him for a photo, which he said “of course” I could take his picture as long as I did not make him look fat.

Mr. N Oxborrow and Me

Mr. N Oxborrow mentioned that he was trying to set up a charity for scoliosis awareness an asked if I was going to send a copy of my book to help people with scoliosis, I told him I would do anything I could to help him. I gave him a bone to take home for his dog, I just cannot go and see Mr. Oxborrow without taking something for his dog.

I was weighting for the ambulance to pick me up after my appointment (not my normal guys), an hour passed then another and another and I was getting very stressed out and just wanted to get home, I said to my mum in a very stroppy voice, “right, that’s it, I have had enough of waiting”. Mum said, “sit down and stop being so bloody moody”. “I’ll give it another 10 minutes” I said. “Well, you don’t have to” mum said “they are here”, “about time I mumbled”. We finally left the hospital at 7p.m and finally arrived home at 8.30pm, I was in a lot of pain as I did not have any of my medication with me and I was really tired not to mention being hungry as I had not eaten all day.

1st January 2011:
Happy New Year to you all I hope that 2011 brings you everything that you want.

My hospital appointments start again next week, when I may have more news on what is happening.

6^th January 2011:
I went to see Dr. Lieberman (pain specialist) today, we had a general chat and Dr. Lieberman asked me how my fund raising was going and I told him about the charity bands night I am having in Wrexham at the end of April and about the bands that I have coming along to perform on the night.
Dr. Lieberman told me about a young guy called Thom who he knows and put me in contact with him, Thom sings mainly soul and blues music, Thom is really good.

In regards to my treatment he is not going to mess about changing any of my medication as I am coping reasonably well on what I am taking. The only other thing that was mentioned was the subject of me having children and taking Gabapentin in the future. Dr. Lieberman said I will have to stop taking the Gabapentin but if the pain got to bad that I could take Morphine. The safety of taking Gabapentin during pregnancy has not been established but my doctor does not recommend me to take it during pregnancy. When the time comes for me to start thinking about having a family he will talk more about how the morphine will work for me.

17^th January 2011:
I am still attending hospital weekly for my Hypnotherapy, which is meant to help control my sickness (Gastroparesis).
Gastroparesis is a condition that occurs when the stomach takes too long to empty what you have eaten.

Normally the stomach contracts to move your food down into the small intestines for it to digest. In a person suffering from Gastroparesis the vagus nerve, which controls the movement of food from the stomach into the digestive tract, has been damaged causing the muscles of the stomach and the intestines not to function properly. Due to this I am still having many days when I am constantly being sick when I have any fluids. The Hypnotherapy is not helping me at the moment. I have still got about eight more weeks to do so I suppose it is early days yet.

I am due to see Dr. Watts on the 26^th January so I will just have to see if things are any better by then.

I had to have some ketamine for the pain in my back the other night, my mum came into my room and asked me what was wrong, my mum always knows when my pain is really bad and I asked her if she would get me some ketamine as the pain was so bad.

I should have news on my book any day now. I know I keep saying this but the book had to keep going back due to some mistakes in it. But it is now on it final galley and the next step is for it to go to print. Please call back soon for news on my book.

26^th January 2011:
I went to see my gastro doctor this morning (Dr. Watts), Dr. Watts is being really nice now and we chatted for a while, I explained that things were not much better and that I had not noticed any benefit from my weekly Hypnotherapy sessions. But as I said to Dr. Watts I will give anything a try and I still have six weeks to go with my Hypnotherapy. Dr. Watts explained that mine was a complicated case due to my NF, which is why I am seeing her and not any of her Reg' doctors. when I first met Dr. Watts over two years ago now, I was not keen on her. When I was in the hospital back in April 2009 (I was in hospital for four weeks) Dr. Watts came into my room and shouted at me for doing my college work, which still needed to be done whether I was in hospital or not. But now Dr. Watts is really nice and she mellowed so much since our first meeting.

Imagine having a stomach flu that never goes away; endless bouts of nausea and vomiting up undigested food, bloating of the stomach and food washing up into your mouth. That is what gastroparisis is like for me. One minuet my tummy is flat the next I look a so I am nine months pregnant (see pic’s below).

Gastroparesis, also called delayed gastric emptying, is a medical condition consisting of a paresis (partial paralysis) of the stomach, resulting in food remaining in the stomach for a longer period of time than normal. Normally, the stomach contracts to move food down into the small intestine for digestion. The vagus nerve controls these contractions. Gastroparesis may occur when the vagus nerve is damaged and the muscles of the stomach and intestines do not work normally. Food then moves slowly or stops moving through the digestive tract.

Dr. Watts wants me to try Colofac, one tablet three times a day for the next six weeks to see if it helps with the bloating. Colofac is normally used for IBS (irritable bowel syndrome); I also had to have a blood test "I'm terrified of injections. They hurt like hell! The syringe reminds me of a medieval torture instrument, and the needles are far too long!" my mum came in the room with me and I think I must of almost broke her fingers as I squeezed her hand that hard, “sorry mum”. Dr. Watts said she would write to me if there was anything wrong with the blood results.

27^th January 2011:
I was on the other side of the hospital bed this evening, I was visiting my mum who had just had surgery to remove five tumours from her arms that were giving her a lot of pain. My mum also had a glomus tumour removed from under the nail of her little finger, the doctor
(Mr. Christopher Duff) told my mum that it’s only recently that it came to light that glomus tumour are very common in people who suffer from NF. Glomus tumours are small, benign but painful tumours.
One of my mum’s arm’s is really black and swollen from the surgery, my mum was in hospital overnight and was told she must go back if the swelling to arm gets any worse. The doctor also told my mum that he will have a chat with her when she comes back to clinic and show her the scans that she had done, she may need to have more surgery on her right hand due to a number of painful tumours in the right hand.

My mum goes back to the dressing clinic on Friday to have the stitches out and the dressing’s changed.

I am still waiting for news when the surgery on my knees will be and news on the surgery on my leg will be.

My book should go live in the next ten days so bob back soon when I will post how you can buy a copy of my book, all money raised from the sale of my book will go to charity.

7th February 2011:
"Great News", My book is now live, please go to my "Items for Sale" link for more info on you can buy a copy of the book "Thank You". I have not seen a copy of it, but my publisher is going to send me a copy, which I am really looking forward too.

The sickness has been really bad this past few weeks and I had an allergic reaction to some antibiotics that I was put on for a water infection that I have at the moment, I had to go to A/E and they changed the antibiotic.

Not having much luck as my back has giving me a lot of trouble too. I go for a fitting for my new back brace and knee braces soon so maybe things will be better then.

I have got to go and see the doctor who is doing the operation on my knees, he wants to explain what the implications will be if I have the Operation while I have the MRSA bug and the risk involved in doing surgery while I have this bug. will let you know what I decide.

15th February 2011:
As you can see my book is now on sale and can be bought from all good book shops, but if you would like a signed copy then please go to the Buy Now link on my front page and I will post a signed copy out to you. My book is also on sale in the USA, please follow the link on my front page or go to my items for sale link.

Last week I saw the neurosurgeon doctor (John) at St Mary’s, after giving me a full check over he looked at my legs that I had mentioned had been really painful. I have a large tumour in the leg that is growing. The doctor wants to make sure that this tumour can be removed safely and that it is not going to cause any nerve damage.

Just as Dr Sue Huson (my NF doctor) was about to come in the room the fire alarms went off, so we had to wait a further 20 min’s before we could continue with my appointment. The nose from the alarm was really loud and you could not hear yourselves talk.

Alarm now stopped and we were aloud to continue with our appointment, David my boyfriend had come with me to my appointment as we both wanted to chat with Dr. Huson about having children and what I was to expect when the time comes in a few years. I am going to talk to Dr Sue Huson again in six months.

I am also being sent to see Dr. Christopher Duff, Dr. Duff is a plastic surgeon and in fact he is the doctor who recently did surgery on my mum.

My mum went to the dressing clinic to have her stitches out after the operation she had to remove five tumours, but unfortunately the operation she had on her right arm had not healed and she had to go back the following week to have the stitches out, which again had still not healed and although took the running stitch out they had to put strip stitches across her arm, which is still a little swollen and bruised.

I have not been so well with the sickness again recently, I am not able to keep anything down and I am beginning to feel warn out again with it at the moment.

21^st February 2011:
I am really pleased to have my book out and for others to be reading my journey with Neurofibromatosis and Scoliosis. It does feel a little weird though to see my book in print. I have received a lot of good feed back from people who have read my book, some from people who can relate closely to what I have experienced with NF and others who just want to learn more about NF.

The book is just the beginning for me, I have got so much more planed, getting there may be a rough road at times but I’m not going to let NF stop me and together we can help each other.

I am really excited about sharing my story with the world of those living with NF and Scoliosis and I hope by doing so it helps to bring a little hope your way. Thank you for your continued support, I really do appreciate it.

The sickness got really bad after my last post and I ended up in hospital with dehydration, I was only in over night. I was given five bags of IV Fluid and more anti sickness injections. I will up date more about my hospital stay over the next day or so. But for now I have got a list of people that I need to post my book too.

24th February 2011:

I went to see my godson (William) and his mum (Leanne) for a few days; I had a great time seeing Leanne and the family. I even considered getting a tattoo done of my godson's name. He is so cute.

Leanne and William also visited me at David’s in Wales and we called to see David’s mum (Jill).

I went for a drive with William and Leanne and while I was stopped in traffic at some traffic lights a car went into the back of me (the driver drove off), not much damage to the car apart from a small dent in the boot. But both Leanne and I suffered whiplash but thank God William was ok.

28th February 2011:
This morning I did a radio interview about my book at BBC Radio Manchester with Heather Stott. I also went to the M.R.I over having the operation on my knees.

I was at the hospital most the afternoon and my ambulance driver (Jill) called back for me three times before I was ready to go home.

The doctor I saw I had not seen me before and knew nothing about my condition (I do wish you kept to the same doctor each time), this appointment was meant to be so the doctor could talk about the risk of having surgery while I have the MRSA bug. But this doctor said he knew nothing about the MRSA and decided to look at my knees after, which he said were out of line (which I already Knew), he decided to send me to have x-rays of the knees, another 30 minutes later and back in to see the doctor who put the x-rays of my knees up onto the computer for me to see, he said that one knee was sitting ok but the other was well out of line. My consultant came into the room and asked what was happening, he looked at my x-rays and said to the doctor that was dealing with me "I hope you have ordered a MRI scan for this lady " and that is how it was left. I have now got to have another MRI scan of both knees before any decision is made on how to do the surgery. The doctor also thinks I may have arthritis in my knees now too.

Later in the week I had to go and see Paul over having a new back brace made along with two new knee braces, this appointment went really well and we sat and chattered to Paul for a while just filling him in with what is happening.

I have also received a letter saying I have got to go for a full spinal scan in April, I think Mr. N Oxborrow (My spinal doctor) must of requested this.

The sickness is not much better really and the hypno' has not done anything to help with the sickness, but I gave it a try.

I will update when I have some news for you.

31^st March 2011:
This month was a busy month for me.

On the 14^th March my mum, brother, Chris, my friend Daniel and me went to see Sally Morgan, which was great fun. I gave her a copy of my book and I got a copy of her book. Sally put my book on her web site, which was really nice of her.

17^th March my mum and me were invited to London for the
V inspired National Awards as I was in the finals for the Spirit award. The venue was being held at the indigO2 at the O2 arena. It was great to meet so many inspiring people and everyone was really nice. Leigh Francis was at the event and infect it was Leigh who was announcing the spirit award winner. He was so funny and had the audience in stitches. I could not believe it when Leigh announced that I was the winner. I won a lovely trophy (really heavy), £1000.00 for my charity and £1000.00 towards any project that I am doing for charity. You can see clips from the award night by clicking on the picture below.

22^nd March, I had to go and see Mr. C Duff who is the plastic surgeon, we had a chat about some of the new tumours that I have and it was decided that they should be removed, he was going to do the operation at the end of April but I have got a charity event and I don’t want to let anyone down so I said I will have the surgery after my event.

23^rd March, I went to see Dr. Watts who is my gastro’ doctor, not much to say about this appointment really as there was no change in my condition, I am still being sick and the hypnotherapy that I was having did not help so it’s been decided that I don’t go anymore. I have got to go back and see Dr. Watts in six weeks but before if things get too bad with the sickness.

I have also been back in hospital this month (overnight) with the sickness, I was given anti sickness injections and iv fluids.

31^st March, I had to go and see Dr. Phil Bullen, at St Marys to have a chat about the affect that the NF might have on me when I decided to have children, this appointment went ok, but I will tell you more about it when I next update, I don’t have much time just now as I am off on my holidays for a week later today and my mum is going to update my web for me as long as I have everything ready for her to do it.

The day I get back from my holiday’s I have got to go for a full spinal scan and a scan on both my knees, I have also got to go for the new fitting for my back brace and knee brace’s.

April 2011:
I had a great 21st Birthday, which I spent in Tenerife with my boyfriend (David). I would like to say a big thank you to all my friends and family for all the lovely cards and gifts that I received, I loved each and everyone of them.

It's been a busy month with the hospital again. On the day I returned home from my holiday (Friday) I had to go to hospital for scans on my knees and a full spinal scan, while I was on holiday I was in so much pain with my back that I text my mum and asked her to ring my spinal doctor to ask if I could see him before September. He is seeing me next Monday and hopefully he will have the results of my scan too.

I have been back to have my spinal brace made and I am just waiting on it coming back now, I have gone for a red one this time with black inside. When I got back from the fitting of my back brace I was in so much pain and felt so unwell that I tried to get into see my GP but unfortunately the surgery was closed so my mum took me to the walk in centre, they said they could not see anymore people, They asked me what was wrong and told me to go to the A/E department, on arrival at the A/E my temp was 37.9 and the nurse said I would not have to wait very long as she could see I was in a lot of pain, two hours later the doctor called me in, I could barley walk I was in so much pain in my leg/foot and tummy.

The doctor asked for a quick run down on my medical history and as soon as he found out I had NF he said the pain was down to my NF. I got very upset as he had not even looked at my leg or tummy and I asked why it was when he knew that I had NF did he not bother to look at my leg and just presumed that the pain must have something to do with my NF. By this time I was very upset by it all and I was in so much pain. He just said he was not going to x-ray my leg or do anything with it, but wanted to take some blood test to try and find out why my temp was so high. The nurse came back and told me that I was being moved to a ward while I waited for my results, I have a big phobia of needles and told her I did not want any blood test doing, mum spoke with the doctor and explained about the difficulty that I have with needles and said she would take me home and take me to see my GP in the morning. The doctor then decided to do an x-ray before allowing me home, which did not show any brakes, but I could of told him that.

The next day I went to see my GP who did examine my leg and said she was writing to Dr Huson to have a look at my leg and to my spinal doctor to try and find out what is going on. Over the weekend the pain did ease a little.

My book is continuing to sell well and can now be bought in WHSmiths in the Trafford Centre, Manchester. Don't forget the book can also be bought on line and by going to my items for sale link.

4th May 2011:
I went to Salford Royal this afternoon to have another fitting for my back brace, when Paul tried the brace on me it he could not get over how well it fitted, I have not got the brace yet as it still needs the straps putting on it but I should have it in two weeks. Paul asked about my book and how it was doing, I had a copy of my book with me and Paul asked if he could buy it to put in the department. so if you are ever at Salford Royal you may just see my book.

9th May 2011:

I was at Salford Royal Hospital this afternoon to see my favourite doctor, Mr Neil Oxborrow. I had been getting a lot of pain in my back so Mr. Oxborrow saw me earlier then he should have done. I was sent for an x-ray of my spine, Neil said that he would have to discuss my x-ray results at his x-ray meeting and if things look to have got worse with my spine since my last x-ray he will bring me back in to have a chat about what to do next, otherwise if things have not changed he will arrange for me to have extensive physio' and arrange to see me in three months to see if the physio' is helping.

We had a chat about what I was doing at college and I could not leave without giving him a bone for his dog, he now blames me for getting his dog fat, "Sorry Neil but it's me who got your dog fat". I think you should take it for a run before you start work every morning lol.

12th May 2011:

Went into hospital this morning for surgery to have five tumours removed, the operation went well and I was allowed home later in evening. I have a nice black eye from where the one on my eyebrow was removed, if anyone asked me what I have done, I tell them I was in a fight, its better then saying I had a tumour removed and going into all the questions that always follow. I also had tumours removed from my right thigh, abdomen, left elbow, lower back under LA and my left eyebrow. I have the stitches removed in ten days.

Monday I am at Hope hospital for the results of the scan I had on my knees to see if any of the tumours have grown and to chat about the surgery on my knees.

16th May 2011:

I was expecting to see Mr. Khan but saw his register he did not say very much and did not look at my knees this time. The doctor put the results of my scan up on screen and I was able to take a picture of some of the report, which read as follows (I think this was the report for my left knee I cant be sure as I did not manage to get it all):

A little oedema signal in the upper parts of Hoffas fat pad, between the top of the patella tendon and the lateral femoral condyle, suggesting entrapment. The rest of the soft tissues show multiple small neurofibromata along the nerve indicating spinal phenotype NF1.

MRI Knee Rt: Standard technique.

The menisci, the cruciates and collateral ligaments are intact. The patella is slightly high lying with the tendons to the patella ratio of 1.45 indicating mild patella alta. The patella lies centrally over the trochlear with a tibial tuberosity to trochlear offset of 10mm. no loose body seen. There is again a little soft tissue oedema in the top of Hoffas fat pad, close to the patella tendon and lateral femoral condyle. Multiple neurofibromata are again noted.

The report is as clear as mud to me really, but the doctor said that I needed to have some physio’ before any surgery was done to build up my quads. I asked if I could have the physio’ at my local hospital, he said it would have to be done at Hope hospital for the first one and then they maybe able to transfer me over. He then asked where I lived and said why I come all the way up here to see Mr. Khan, after going into why I had been sent to see Mr. Kahn he asked if I would like my treatment to be transferred over to my local hospital, to which I said “Yes”. It would make things so much easer going to my local hospital. He said he would speak with Mr Kahn and ask him if that would ok to transfer me and that he would also have to write to my local hospital and see if the doctor there would be willing to make case on, he said my case was a complex one due to the tumours involved but I’m sure between my plastic surgeon and the orthopaedic doctor they could work something out.

Charity Band night:

What a great night everyone enjoyed listening to the bands at the same time money was be raised for when you wish upon a star, the event raised £448.00, which I was really pleased with.

The bands, solo singers and DJ all donated there time for free and Keith who did the printing of my tickets and poster for me did them for free. I have a great net work of support and I could not do what I do without you guys, so a big thank you to all. Below are some pic's from my charity night.

Will lead singer of Candidate 23

B-desire

Titch, who is my mascot

While I was having my charity event I also did a book signing, see some of the pic's above.

13th July 2011:
I have been really busy over the past few weeks so not had time to update my diary, I have been back in hospital and my mum has been in hospital too.

19th August 2011:
You would not believe it, but just after my last update my computer broke on me and for a while I lost everything including my web site but after a lot of hard work from my day he was able to get my web site back for me and I have a new computer to work on now (well, it's my mum's computer really).
Since my last update I have been to see Dr Sue Huson at St Mary's Hospital. not much to report really apart from having a new lump in the back of my leg that is now the size of a golf ball and feels hard, I mentioned it to Dr. Sue and after she had looked at it she felt it would be a good idea if I had a PET Scan to make sure it was not a nasty lump and the fact that I had not had a PET Scan for over two years she did not want to waist time by me having a MRI Scan. I should have the scan in next two weeks. the lump only really hurts if I am sat down pressing on the lump.
What is a PET Scan?
A PET Scan, or Positron Emission Tomography Scan, is an imaging technique that allows physicians to examine many organs of the body and is helpful in diagnosing many diseases, such as cancer. Other scans such as a CT scan or MRI scans , only show organ structure, where a PET Scanner shows organ structure and function.

I am seeing a different doctor (Mr. Kumar's) at my local hospital next week over the problems with my knees, I have so much problem with them giving way on me this past few weeks and Dr. Huson committed on how loose both my knees were. I have been doing physio' at the gym to try help but it's not helping at the moment.

My book is continuing to sell well and if you have not bought your copy yet you can buy a copy in a number of ways, the book is on sale in the WHSmiths shop in the Trafford Centre, all on line book stores, amazon, from the publisher or from me. the book can also be bought in the US.

23rd August 2011:
I have got the date for my PET Scan at The Christie Hospital, I go on the 31st August (my mum and dad wedding anniversary), I have been told that I cant eat for six hours before the scan but to drink lots of water. My mum phoned the hospital this morning to confirm that I will be attending and to explain that I have a big problem with needles, they are going to use some of the magic cream before giving me the injection. I will have to decide which CD to take with me as I have got sit in a room on my own for an hour after the injection.
I have been bad with the sickness again this week and was up till after 2am this morning being sick, I thought it was settling down but no such luck.

Below are some picture of me be prepared for new back brace.

Mike always does the cast my back brace, the brace helps with the pain in my back. I have been wearing my old back brace to swim in as I was in so much pain while swimming. wearing the brace has helped with the pain.

29^th August 2011:
my appointment with Mr. Kumar the orthopaedic surgeon that I am now seeing went really well, I didn’t see Mr. Kumar but I saw his registrar who came in the room and introduced himself to my mum and me. He gave both my legs a very good examination and had me standing up on both my feet. I was then told that I have flat feet and that I need insoles putting in my shoes.

What is Flat Foot?
Flat foot is a condition where the longitudinal arch or instep of the foot collapses and comes into contact with the floor. Flat foot can also be caused by fallen arches. Wear and tear can weaken the tendon that is responsible for shaping the arch. Fallen arches can also be caused by injury. The treatment for flat feet needs to be evaluated by a doctor or health care worker to determine the treatment.

The doctor was not sure if my NF had anything to do with my flat feet, he is sending me for physio' and as I mentioned I am having shoe inserts fitted to my shoes.

If you have foot pain and think you may have flat feet, try the following test, which help determine your arch type.

Foot print test when your feet are wet: look at your footprint on the floor. The front of your foot will be joined to the heel by a strip. If your foot is flat, then the strip will be the same width as the front of the foot, creating a footprint that looks stretched. With a normal arch, the strip is about half the width of the front of the foot. If you have a high arch a thin strip will connect the front of the foot with the heel.
Another test you can do is: put your shoes on a flat surface and view them at your eye level from behind. See if the soles of the shoes are worn evenly. A flat foot will cause more wear on the inside of the sole of the shoe, especially in the heel area. You will notice that the shoe will easily rock from side to side. A flat foot will also cause the upper part of the shoes to lean inwards over the sole. Both shoes should wear about the same way.

I don’t go back to see Mr. Kumar until the New Year, which will give the time for the insoles to have had some effect and also the physio'. He also wants to get hold of all my x-rays and scans that I have had done of my knees so he can decide if he thinks having surgery will help with my knee's giving way.

I go for my PET scan on Wednesday. but will not get the results for a few days. I will let you know when I have some news.

3rd September 2011:
Dr. Sue Huson kindly emailed my mum today to say that the PET scan that I had showed no nasty tumours, this is great news and I can now go away and enjoy my holiday next week. Dr. Huson said she will send me a full report next week but wanted to let me know everything was ok, "Thank You, Dr. Huson".

I received a letter over being measured for my insoles, but I am away and will have to re arrange the appointment for when I get back from my holiday.

I have also received a letter from the Red Cross after being nominated for the Humanitarian Citizen Award (HCA), I have got to go to London on the 8th October 2011 where I will meet all the other short listed people. I will let you know how I get on in October after the event.

I ended up in A/E last week as I fell badly on my knees after my knee gave way on me, after having x-ray I'm pleased to say all was ok and my knee was just badly bruised.

My book is continuing to sell well, if you would like a copy please go to items for sale link for more information.

12^th October 2011:
Today was a busy day for hospital visits, this morning I was at Withington hospital seeing Dr. Watts and although I did not see Dr. Watts the appointment went well. I normally see Dr. Watts over my sickness, but things have not been so bad with my sickness recently as I have only been sick a few times over the past weeks or so, which is good when I think back to when I was being sick every day.

I have got to continue taking my medication and he wants me to go back onto stomach tablets that I was taking. I was meant to have a blood test but I really don't like needles and could not buck up the courage to go for it. I have really bad veins- the kind that disappear as soon as someone tries to get blood, where the nurse tries my right arm, then my left arm, then goes back to the right arm, then starts looking at my hands. By this time both my arms are bruised and I’m in tears. I'm sure you get the picture. I have tried the magic cream but it does not always work. I will probably receive a letter asking me why I have not had the blood test in a few weeks, but Dr. Watts knows about my phobia and it is written on my hospital notes so I'm sure they will understand. Well I hope they do.

Later in the morning I was at MRI seeing Mr. Christopher Duff who is my plastic surgeon, when I went in to see him there were two other doctors and Joe (my NF nurse) in the room. They all introduced them shelf’s , which help to relax me. Mr. Duff showed me the recent scans of my knees / legs and pointed out all the White dots on my scans (there were loads) and said that all the white bits I could see were the tumours in my knees and legs. I told him that I was being bothered

by the tumour at the top of my thigh as it was growing and felt like a golf ball, I also have one on my back that hurts when I try to sit back on a chair. Mr. Duff said he would remove them for me and that he was looking at doing it in December under a general anaesthetic.

I had the room in stitches when I told them my joke about the black berry (what did one black berry say to the other? Nothing) if you watched the news the black berry phones were down for three days, so this was a pretty good joke for me.

Mr. Duff is going to do the surgery at my local hospital, which makes things much easer for me.

13th October 2011
Today I saw the orthotics doctor over my flat feet ( what a nice guy). He fitted me with insoles in both shoes and said that both my feet were really flat. Flat foot is also known as fallen arches. A flat foot does not have an arch when standing. The doctor thinks by putting insoles in my shoes it may help with my knee and it could even help with my back pain, so fingers crossed.

My Orthotic doctor said he wants to see me again in about four weeks and that he wants me to bring my foot braces and knee braces with me as he is going to see if he can come up with something that will be more comfortable for me. I will let you all know what he comes up with, I am sure anything will be better than what I have to wear at the moment.