Rosies Story

A Story Of Pseudomyxoma Peritonei.

How does one start such a story that has so much impact on your life. I have always been in good health, apart from the odd cold, but never in my life did I guess what was about to happen in 2005, would change my life forever. I have worked at my local hospital as a receptionist in the Accident and Emergency Department for many years, and have seen patients with varying degrees of trauma and illness. What I didn't realize was my own symptoms that were beginning to develop. I had started to put on weight, but I put it down to my age and middle age spread! As the weeks went by I continued to work and even Jeff my husband did not see the danger signs that were creeping up on my body. One day a colleague at work asked the question "was I pregnant?" and whilst on a night out a young girl, much the worse for wear with drink approached me and patted my stomach uttering the words "aaahh baby". I was so upset and when I returned home asked Jeff what he really thought about my expanding waistline. This made him realize that something was not quite right and we made an appointment to see our local GP. He seemed concerned after examining me, and thought I may have an Ovarian Cyst

I was referred to the hospital to have an ultra sound scan and saw my Gynaecologist who was very concerned with the scan results. He told me there was a large Cystic Mass which appears to arise within the pelvis and was occupying the whole of my abdomen. There was also ascites (fluid) seen in the upper abdomen and around the peritoneum and also into the pelvis.

I was sent for blood tests. I received devastating news. They believed that I had ovarian cancer. I rushed out to Jeff who was waiting outside and told him the news. He went grey and was totally speechless. I was numb and in tears and just couldn't believe that this was happening to me. My Gynaecologist also explained that the blood results had picked up abnormalities in the bowel. I was booked to have a Colonoscopy and was told if nothing showed up that I would be admitted that day and operated on the next morning. After having the colonoscopy which showed nothing at all I was admitted and the next day went to theatre. I was in theatre for about six hours, and on recovery from the anaesthetic, Jeff and myself were informed of the findings. My Gynaecologist explained that when I was opened up a subtotal hysterectomy was performed, but there was worse to follow. They had to remove part of my omentum which is like an apron of skin that sits in front of the abdominal organs and protects them. Also they noticed that my large bowel was knotty in places and I had to have a right hemicolectomy and so a third of my large bowel was removed also. Nothing showed up on the colonoscopy because the damage was to the outside of the bowel around the illium, which forms part of the small bowel and Cecum which is part of the colon and lays just above the appendix. After ten days recuperating I was discharged from hospital and sent home to convalesce. Jeff took time off work and started the slow process of building me up again. I had lost a lot of weight and was very gaunt. I had no appetite at all and was put onto fortisips, a kind of food supplement. Eventually I was able to face a soft diet but it took me weeks to get back to some normality.

I eventually started to recover from my operation and put on weight but suffered with abdominal pains and had to come off all foods containing fibre and eat a more blandish diet.

Time passed and I eventually had to attend hospital for my post-op appointment, and to receive results of the biopsies taken. When we went into the consulting room to see the gynaecologist I could tell that it wasn't going to be good news. He explained that I had ovarian cancer as suspected with a benign tumour showing in my bowel. We were not too clear what he was telling us. He discovered this cancer to be very rare and only two hospitals in the country specialised in the treatment of this disease. I was referred to the Christies Cancer Hospital in Manchester, this being the closer of the two.  

                                              One In a million

Eventually I was referred and we made our way to the hospital. I was very frightened and didn't know what to expect but I knew that these were the only people who could help me through this. I was Introduced to the leading Consultant She was a very nice lady and came into the side room to chat with me. The first thing she asked was what had I been told. We both explained what we could and after finishing what we knew she explained that I didn't have Ovarian Cancer but the correct diagnosis was Pseudomyxoma Peritonei. A very rare cancer that only affects approximately one in a million people. It was a benign cancer but obviously could still be life threatening because of its actions. She went on to explain that it is caused by a polyp within the appendix that bursts producing cells that are delivered into the peritoneum and attaches to the organs and surrounding tissues where they produce a Jelly like Tumour.It does not spread around the body and is encased within the peritoneum. I asked her the question that mattered most to me, "what would be my possible prognosis?" and she told me she couldn't give me one, not yet anyway. This cancer works in a different way to other cancers and doesn't seem to follow any pattern. She explained that there was different options open to me but to leave things alone for the time being and see what happens. I had to attend for more scans over the coming months and eventually went back to Christies to get the results.It was not good news. I was told that the tumour was in my small bowel and there was nothing they could do for that. It was also around a part of my liver and spleen and some of my rectum.The 120 mile drive home was pretty dismal and both jeff and I felt that this was becoming something that we couldn't deal with anymore. I was pretty much recovered by this time and felt very fit and had returned to work.

The Oncologist at the Christies Informed me that at some time I would have to have chemotherapy although it was left to me as to when. I was given the option of waiting and seeing what happened or having it at this point. Jeff and I after returning home tried to comprehend why they had given me this choice but couldn't come up with an immediate answer. We decided that the best course of treatment would be to do something now in the hope that the chemo might shrink this thing and give me a fighting chance. I phoned Christies to see if it could be arranged for me to have my chemo nearer to home and subsequently an appointment was made to see an Oncologist at the James Cook Hospital Middlesbrough. The Christie hospital made the appointment and in due course I attended the clinic. He had never dealt with this cancer before and after consulting with the Oncologist at the Christies a course of chemo was made available to me . I was to be given a course of tablets Xeloda (Capecetabine) followed by a six weekly Intravenous infusion of Mytomycin C over a period of three months. My Oncologist explained that at this point I would be scanned and if improvement was made I would continue for another three months. If no change was noted however the treatment would be stopped.

The Chemo was started and the only symptoms I experienced were sores to my hands and feet which were treated with creams. I only ever had one episode of vomitting and I didn't even lose my hair, thank god. After the three month period I had my scan and phoned for the results. The findings were remarkable. The chemo was working and the fluid in the abdomen was starting to shrink away. I carried on with the treatment for the rest of the six month period and was again scanned which showed no significant change, but over the next few months my scans showed remakable results and eventually my Oncologist explained that all traces of the fluid had been eradicated. There still remained the pockets of tumour in the small bowel, spleen and liver with some large bowel involved but the blood tests were beginning to show signs of returning to normal levels which was good news. I was not free of this thing by no means but things were looking pretty positive. I am and always have been positive about this disease but it still nags away at you daily, constantly, and most of all at nights when you are lying in bed in the quiet of the room. As my three months scans came and went things were pretty much the same. I knew they couldn't do much for the small bowel and as I was pain free and not suffering with any symptoms apart from the odd painful abdominal cramps for which I was taking buscapan to stop the spasms. I just got on with my life and hoped that nothing would manifest for a long time. My Oncologist at home had told me he was optimistic that the chemo would work for a long time so I carried on as normal, or as normal as possible. I went to work and ran the house and Jeff and I had the occasional holiday, and things were pretty much as they should be.

The Shape of things to come.

I received a phone call from the co-ordinator in the Pseudomyxoma Dept who explained that I would need to attend for an M.R.I Scan which would show a more complete picture.The team of Consultants attend various medical conferences discussing patients' medical historys.They wished to piece my case history together from beginning to end and then with the results would have a complete picture of what was happening. Eventually I returned to the Christie and had the M.R.I. scan and then attended the outpatient clinic to see my consultant a week or two later. What happened next was such a shock to myself that I couldn't speak. My consultant after going through my case history, then said "Rosie I am in the fortunate postion to now offer you an operation to try and eradicate this disease totally. Its about 75% odds that we could get everything out, but if you choose not to the disease will most probably return". I just couldn't get my head together.

The Third Person In the world.

I understood my small bowel was inoperable!! He then told me that because of the chemo's reaction to this disease, they now believed the small bowel was normal and as such I was now operable. Apparently I was only the third person in the world to get this result due to the action of the Chemotherapy. It was such a strange feeling for me. I still couldn't say much and I wasn't comprehending what my consultant was saying and as such Jeff had to ask the questions that mattered. I had gone from being inoperable to operable and was suffering from shock. It was incredible. I now had a chance to be totally rid of this thing and had good odds into the bargain. He then told me that I would probably need a splenectomy and part of my liver removed and also they had discovered some disease around my rectum affecting the large bowel. He was optimistic that he could remove this as long as there was nothing hidden when he actually got in to have a better look. He also considered putting more chemo into the abdominal cavity to kill off anything that may have been missed but at this time he wasn't sure if I needed it. There was however a possibility that I may need a colostomy resulting in a stoma although a small possibility and this is what frightened me the most. I talked it over with Jeff and although he is a skilled State Registered Paramedic he could only help with so much and I needed to communicate with others who were in the same situation. I had only ever spoken briefly on the phone with one other PMP sufferer and it didn't really help me.

I was eventually introduced to the Pseudomyxoma forum on the Christies website. I had always shyed away from the computer in the past because of all the horror stories I would possibly be met with, so I decided to leave well alone, that was until this point. Jeff set me up and registered me and then sat me down and I was blown away. Here there were other PMP ers talking to one another and helping each other along with upcoming treatments. When people were low there would be others to pick them up, and when they were in Christies for their operation, others would be right alongside them, even visiting people they had never met and there was so much information I was picking up from the site that I had never had access to before. I was in a whole new family of people who were going through exactly the same symptoms as myself. I was not alone anymore. Although it only affects one in a million people I had never known so many people in one place discussing the same problem as myself. Jeff told me what to do and before I knew it I was writing my own posts and getting loads of replys and questions answered and making new friends. My whole world had been turned around within a few days of seeing my Consultant.

The next step was to visit my local doctor and receive injections before my operation to boost my immune sytem in readiness for my spleenectomy.This prepared me and protected me against illlness such as Pnuemonia,Influenza and Meningitis. I knew that once my spleen was removed I would be on antibiotics for either five years or even for the rest of my life. This was performed by the practice nurse at my local surgery. So my second big operation was looming and the big day was confirmed for Mon 5th Nov 2007. My god what a night in history to share with. First I had to return to Christie Hospital and have a pre op scan so the team could see an up to date view of what they would be dealing with and on Thur 25th October 2007 Jeff and I once again made the long journey to Manchester. Nothing was more forthcoming from this scan and on Fri 2nd November 2007 we made our way down to Manchester for admission to hospital.

We towed the caravan down to Bury as Jeff intended to stay there whilst I was in hospital and commute daily into Manchester to see me. I stayed with him the first night and the next day I was admitted to the Christie Cancer Hospital. The weekend was pretty much general nursing care with my stats taken regularly and I was started on Citra-Fleet to clean my system out starting from late on the saturday evening. It is pretty much drastic stuff and in no time at all I was making regular journeys to the toilet. I was now nil by mouth and stayed that way until after my operation. On sunday afternoon the anaethetist came to see me and explained the procedure for my operation. Monday morning arrived and I was taken down to theatre and prepared. After discussion with the anaethetist it was decided for me to have an epidural performed before going ahead with the operation. My operation lasted about seven hours and I awoke in the critical care unit in the early evening of the fifth of November. I had a nasal gastric tube that enabled food to be delivered to my stomach and also to remove the waste products. I also had a central line fitted in theatre so as to take bloods and administer fluids to me, I was also catheterized. Jeff was there by my side when I awoke in the critical care unit and I noticed he looked pretty much shattered. We forget what relatives have to go through whilst we sleep. The next day one of the consultants came to see me and told me that the operation had gone better than I could have dreamed of. The areas of disease were pretty small and in fact I didn't even lose my spleen, only my gallbladder. I also did not need a stoma which was my biggest fear. The other areas were cleaned out and my peritoneum was flushed out with a heated chemotherapy for 90 minutes to kill off any traces of remaining cancer cells and then drained out of my system. One of the other consultants had asked for permission to take biopsies for the research dept but apparently there was not sufficient tissue there to be taken. I was informed that the disease was all gone and hopefully would not return .I made a very good recovery in critical care and two days later I returned to the general ward and started my journey back to recovery. It was a slow process to start with. I was fed intraveniously and received regular heparin injections into my abdomen. Various other fluids were given ie antibiotics, saline, and glucose were administered via the tubes and pain killers were given by pump. My urine output was carefully watched as was my blood pressure but I didn't seem to suffer from any major setbacks. After a while I was allowed sips of tea and this was just heaven to me. Solids were then introduced over a period of time. Once I started to pass food through my system and all seemed to be working normally, the tubes were slowly removed one by one until I was left with just the catheter. This allowed me some movement and I began to have little walks up and down the corridor with the physiotherapist. Eventually this was also removed and I felt a little more relaxed. I experienced a lot of fatigue but was told by the staff that this was normal and it would pass. After two weeks of the best nursing care I was allowed to return home.

We set off to return home. It felt a like a long journey. I felt absolutely shattered and when we arrived home I basically collapsed into bed. It was going to take me approx three months to get back to some normality. I was eating little and often as I was instructed by the nursing staff. I couldn't eat large amounts as I experienced pain in my upper chest. My bowel habits started to improve after the first week of being home. I suppose I was now eating more solid foods. I was very tired and slept quite a lot but made attempts to exersize as I was shown. I was pretty sore from the operation, but only needed to take paracetamol for pain relief. The district nurse came out to see me to attend to my operation scar. The scar was pretty drastic and there was some reddening to one area and I was concerned that I had a slight infection. It was monitored but came to nothing and soon my scars started to heal. I experienced a few problems, mostly fatigue, excess acid and some nausea but they started to subside as the weeks went by. After the second week at home the fatigue just suddenly lifted and it was as if my energy levels were boosted all at once. I was able to walk short distances but felt "wishy washy" for quite a time. The walking got longer and longer until I felt that I was back to normal limits within four weeks after having my operation. For a long time I was unable to lay on my side in bed and stayed propped upright mostly because of the operation and having a hiatus hernia which produced acid and nausea but I had recurrent feelings that my scar was going to pop open. I know it was all psycological but this is the effect it had on me.That all passed and now I can lay and roll over without any side effects at all. The only pain now was a slight niggly pain in my left side but it was a bearable pain and I didnt need any painkillers.

I received notification to have my post operative assessment at the Christie Hospital on the 21st dec 2007 and hopefully to get answers to some outstanding questions. We arrived early and on entering the outpatients we met the nurse In charge of the psuedomyxoma clinic. Within five minutes I was shown into the consulting room and the doctor went through the operation once again to explain exactly what had been performed in theatre. He explained that on opening my abdomen the extent of the disease was minimal and that my gall bladder was removed as it was identified as a potential pocket for the disease to hide in. Also they removed the rest of the fatty tissue named the omentum which was half removed on my first operation in Darlington Memorial. They also stripped away some or most of the peritoneal lining and then as mentioned previously the abdominal cavity was flushed with heated Chemotherapy. It was really good news. The one remaining question was "Will this thing return?" The doctor explained that they could not give me a 100% guarantee because of the way this disease worked but they believed that after studying the histology and the findings in theatre that they were confident it would not return. I was happy with the thought that I was now free of this disease and the future was looking brighter. It only remained now to have regular six monthly scans and then annually to keep a close eye on me. This is where I now stand. (See Updates below)

This disease is like no other cancer known. Misdiagnosis of pseudomyxoma is a common occurence. People are referred to Christie hospital with the belief that they have pseudomyoxma only to find it is something completely different. It is indeed rare but although it affects approx one in a million people, its effects on an individual vary greatly. One chemo works for one and not another. Sometimes it is more aggresive for some than others. It can take years to develop and symptoms may be hidden. There is an abnormal pattern to its effect on an individual. This is why there is sometimes a wait and see policy with the doctors involved in fighting this cancer. It is frightening and there is quite a lot of Information online which I believe can make things worse for newly diagnosed patients.This Information in most respects is out of date and the special people involved with P.M.P have made very significant progress in treatment and diagnostics of the disease. I am very lucky in that the chemotherapy worked incredibly well for me and gave me a chance to remove the rest of this disease with surgery.

I wanted to share my story with not just other Pseudomyxoma patients but with all patients suffering with cancer in whatever form and explain that even when things seem so hopeless that there is still hope. People are behind you and treatment is there, its not hopeless, this thing can be beaten. Although I have been classed as clear I will be watched and scanned probably for the rest of my life.Thats ok because I know I am in good hands. Throughout my illness I have tried to remain positive both mentally and physically which I believe has helped my recovery. It has been hard at times and I know I have been very lucky. I do not know what the future holds for me as far as this disease is involved and I count each day a blessing. I will continue to update the site as long as possible and hopefully I may add others to the site who are going through similar circumstances with Pseudomyxoma Peritonei. I know that it is a personal journey for most people and I accept their privacy but if I can give any comfort, encouragement and hope for the future then hopefully I have given something back. Thank you for visting my site and I hope you will return as it develops.

Updates.

05/05/08 As of today I am awaiting my first post op scan due to take place at The Christies Cancer Hospital, Manchester on 19/05/08. I will add my progress here, as and when I receive any information.

05/06/08 Post op scan results came back today. Fantastic results were convayed to me by Mr Wilson at the Christie Cancer Hospital in Manchester who phoned to say that all is well. The scan showed no disease present and the report was minimal.. next scan in six months time.I am so happy to receive this news.

10/11/08 It is just over a year this week since my big operation at Christies Hospital. I returned today for my yearly scan.I Will update the results when they become available.

12/11/08. Mia phoned. The results have come back very quickly. It shows the scan is clear and my bloods are normal. Once again I can breath a sigh of relief.

29/6/09. I have just had another scan this month and have Just recieved wonderful news from Mia that all is clear and my bloods are normal. I am going to see Mr Wilson or an associate this Month to discuss hopefully going onto Yearly scans..

3/7/09.   I didn't get to see Mr Wilson but I did see an associate, After examing me he explained how unusual my case study had been.He mentioned that in the early stages how they had all but given up on me, and went on to explain the miraculous results I had  gained from the Chemo. I asked the question, what is my condition at the moment? Am I in remission??. The answer was simply, Cured after surgery. Cured is a word I thought I would never hear. I am to have yearly scans but six monthly check ups. I can say no more other than to carry on with the updates as time passes and hope and pray that this thing never comes back.

9/6/10. Today I recieved news from The Christies Hospital that my scan results showed no recurrence and the blood tests were normal.

16/07/11. I returned from holiday today and found a letter from Christies waiting for me. My latest scan taken last month shows no recurrence once again and my markers are all normal. Another year has passed and I am once again thankful for such good results to date. I retired early this year. I am determined to enjoy my life now to the full. 

                                                    Five years.
19/8/2012. Yes, it has been five years since my second operation. and seven years since diagnosis.  I have recieved a phone call this last week to say all was well, the scan results are normal and my blood markers are normal. I am due to get a phone call from Miss O Dwyer in a week or two. I am hoping that she is going to discharge me from the Christie and hopefully it will just be bloods taken regularly and sent down to the hospital. I am so happy to reach this milestone as others have not been so fortunate and I know I am so very lucky. I keep this website going for them.

With Thanks

I now have to add some thanks especially to Jeff my wonderful husband for his encouragement, love and support throughout this time , my family, also my friends Lesley and Alison and my fellow P.M.P ers through the Christies forum. They have been like a family to me and it has helped me cope immensely with my own struggle. God bless them all.

Special thanks have to be mentioned to all the dedicated staff at the Christie Cancer Hospital In Manchester.

Miss O' Dwyer, MD FRCS and her team of Specialists for all that they have done for me up to this present time. Especially to Mr Wilson MD FRCS for his ability to communicate in such a lovely way. He gave me a peace of mind even when things looked hopeless to me. Also to Gary Witham (Nurse Specialist) and Mia Parkinson (Co-Ordinator). Gary and Mia were always there at the end of the phone in times of need. They were both able to explain the procedures and treatments in a way that was understandable to me and they have helped me immensely. Also to all the general nursing staff who looked after me.

Thanks also go to Dr N. Wadd, Consultant Oncologist at James Cook University Hospital Middlesbrough, who has treated me so well over the last two years, and the lovely nurses on the Mara Unit at Bishop Auckland General Hospital, where I received my chemotherapy treatment, and Mr J Macdonald, Gynaecologist and his team who helped me through my first operation.

Also to Dr David Robertson my G.P. who has been unfaltering in his care for me, and the district nurse team.

Finally my thanks goes out to Kath, my sister in law. She was so adamant in her faith that this thing would be lifted from me. Kath thank you for your prayers. You will always remain special to me.

Thanks for visiting my website. Please return as it develops and

feel free to sign my guestbook .

Donations to further the cause of Treatment of Pseudomyxoma Peritonei, can now be submitted at

Dawn Green's website here.   

 Dawn, another survivor of P.M.P  has now officially registered a charity for PMP. Please support it.