treatment update

I havent been on here for a while because I forgot my password! I was diagnosed with appendix cancer and pseudomyxoma peritonei in June after a laparotomy and I thought I would update everyone about what has happened since then. Im back at work although Ive had more sick days than I would normally have (my immune system seems to have gone on holiday) but otherwise its going ok. I went to Basingstoke in late September for a consultation with Mr Moran the PMP specialist surgeon and he has booked me in for complete cytoreduction and hipec in mid January 2013. Its a daunting prospect but being able to visit where I am going and talk face to face with the surgeon and nurses that will be looking after me has put my mind at ease somewhat. At the moment I am just enjoying relative normality of the pre Christmas preparations before I face the battle next year :-)

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  • Hi Welcome Back...thank you for the update...I am flabbergasted that you are back at work and thought you were going to have the Sugarbaker Regime! does this mean you have not had this yet?...I am glad you are ok though... and wish you well for you future treatment sending you my love x G x :-)

  • Thanks Gywn, cytoreduction and hipec is the medical description of the sugarbaker procedure. Mr Moran said that there is no hurry for the treatment and although it could be done now he wants me to have a nice Christmas with my family. Work isnt too bad as despite my objections my work colleagues refuse to let me do anything strenuous. I have found that hot flushes are inconvenient though and keep having to run outside to cool down! I am a bit worried about my immune system though, I keep catching viruses and am fighting a chest infection at the moment that refuses to shift and the antibiotics are running the guts out of me! Unfortunately as I am in contact with over 180 people every day in work its a bit hard to avoid bugs so Im seriously considering going off sick a couple of weeks before my surgery to try and avoid catching something that might delay it.

    I hope u are keeping well x

  • Hello

    Work doesn't sound a safe place for you to be if you're in contact with so many bug-ridden people nobly soldiering on when they're ill and giving you their germs. When I was working I used to have 3 or 4 chest infections a year each requiring 2 or 3 lots of antibiotics before it would go away. That has greatly reduced since retiring, which is fortunate as I'm that bit fitter for coping with chemo. You need to be signed off now for a couple of weeks, possibly longer, to give your body chance to fight back.

    Good luck

    Love Christine x

  • Thanks Christine, I am currently discussing options with my manager re using my annual leave prior to my op so that I will have a couple of weeks away from work and lessen my chances of catching nasties! Mr Moran (my surgeon) told me I need to get fit before the op as it can take a bad toll on the body, especially the heart and lungs. So I need to be on the treadmill working out rather than hacking a lung up in my bed! Happily over the last couple of days the coughing has reduced greatly so hopefully next week I can start exercising to boost my chances of a good recovery. Im also taking loads of supplements and eating lots of fruit and veg to help my immune system fight the bugs. x

  • Please see your gp as you're ill and shouldn't be using leave. You'll need a holiday at some point!

    Love Christinex

  • Welcome back from me too. Well done you for going back to work. That's impressive! The Sugarbaker Technique is a bit daunting. You have the same surgeon as my neighbour who had hers last January - on 12th. She's made a total recovery but it took a little time.

    I hope you can get in touch with other people who've been through this as it should help. Let us know how everything's going.

    xxx love Annie

  • Thanks Annie, it is daunting but I have joined a great facebook site specifically for people who have my disease and been through the 'mother of all surgeries' ( their name for the Sugarbaker technique). It has helped me to hear about other peoples experience and to be able to ask questions about a disease and treatment that my Gp hasnt even heard of. I am just viewing it as one last hurdle to get over until I am disease free. I consider myself very fortunate that I do not have an aggressive form of disease that needs treatment with systemic chemo. I hope u are well. x

  • Hi. Just joining the others in wishing you well and do keep us posted. Glad to hear you found a good online community to share experiences with.

    All the best for the op and your recovery.

    Linda

  • Thanks Linda,

    I hope all is well with you and I will keep u all posted. The op I am having is being used to treat some forms of ovarian cancer so my experience may be of help to some ladies on this site who are offered this type of treatment. x

  • Welcome back!

    i'm glad I am not the only one who forgets passwords! Against my daughter's professional advice I keep a notebook with all my usernames and passwords locked away in a safe place, trouble is, I am inclined to forget the safe place! LOL not sure if that is old age or chemotherapy!

    I do not know much about the sugar baker technique! I had a complete debulking, hysterectomy, double ooferectomy, omentectomy and abdominal clearance in Jan 2010. I was not very impressed with the observational powers of my gynae who said they were going to remove my appendix at the same time - mine was removed in 1955 and I have a very obvious scar! However he has made a great job of both the debulking and my subsequent op to remove the new tumour. I am now in remission!

    I am amazed that you are back at work so soon. With a compromised immune system you do need to take care! I am older than you must be and I was unable to return to work as I was unreliable (I worked part time as organiser of an outreach service for CAB and had no protection from infection). I have, however, found over the years that by taking high dosage Vitamine C and things like oil of evening primrose and garlic I catch few colds and my tendency to chest infections is much reduced. You do need to take care of yourself.

    I never had hot flushes during the menopause but since the op I get horrendous sweats. I keep a damp cloth handy to mop my face! I do not wear makeup because I found it ran with the sweat. I now limit myself to mascara, eyeliner and eyeshadow.

    Good luck for your operation! Enjoy Christmas and take at least 6 weeks off after your op to recover. Have you applied for a disabled parking badge? You should qualify under special rules and it will be a boon after the op as you can use it in any car and it can make all the difference to your freedom of movement.

    Thinking of you and sending my good wishes!

    Margaret!

    Ps you appear to live in Northern Ireland! My family (both parents) are from N Ireland though I was born in England I have a lot of relatives in the six counties! It surprised me that you have to come to England for treatment!

  • Thank you Margaret, I have started taking Evening Primrose oil capsules and multivitamins to try and boost my immune system. I dont want to take any more time off as its effecting both my sick pay and my stress levels (trying to catch up with paperwork etc!). You are not alone in your forgetfulness Im terrible for losing things especially my car keys! I have to come to England for treatment because my disease is very rare and specialised equipment and surgeons are needed to do the Sugarbaker procedure. It would not be cost effective for the Nhs to have a treatment centre in Northern Ireland where the population is under 2 million (statistically only 2 people per year would be diagnosed with pseudomyxoma peritonei in Northern Ireland). Systemic chemotherapy is not effective in treating PMP so it has to be put directly into into the abdominal cavity heated to 42 degrees to work. Im lucky that the treatment is offered as without it PMP is terminal. Some people have had this operation up to 3 times and they bounce back after it which is amazing considering just how much of their abdominal organs have been removed! Im hoping that one op will rid me of the disease for good and I can get on with my life without further drama!

    Im glad to hear u are in remission it must be such a relief for u and ur family. :-)

  • i had not realised it was so rare! Good luck with the procedure! You make me feel lucky to have strightforward, if agressive, OC!

    Good luck with the op! Thinking of you and sending positive vibes!

    Love M

    Xxxxxxx

  • Hi there, Mr Moran did the sugar baker technique on me on July 24 th this year. He and this team were wonderful. You really get first class treatment down there! They managed to get all of my extensive disease out and give me the hipec on the table. It's a hard recovery but nearly 12 weeks later I am doing really well. Do you use the facebook PMP site? It's very good, lots of Basingstoke people on there.

    Best of luck and feel free to connect me if I can be of any help or support.

  • P.s you will need at least 12 weeks off after the surgery- probably you know that already. Depending on your job some people are off much longer. I've had to start getting employment and support allowance as I have a physical job as a physiotherapist and am not fit to do it yet.

  • Thanks for your reply, I do use the pmp facebook page I find it really valuable. Im planning to be off work for at least 12 weeks and as I work for the NHS I will be on full pay for at least 8 weeks of that and half pay for the rest. I work with adults with learning difficulties and my job is very physical and stressful at times so I am hoping that I wont be too badly effected by the op in January and will be able to return. If I cant I should be able to be redeployed to a less physical post or in the worst case scenario early retirement on medical grounds. Im glad to hear that you had a positive experience in Basingstoke and its very reassuring to know that you were well cared for. My mum is comming with me and has decided to retire so she can look after me post op, my brothers are looking after my daughter while I am away. I am lucky I have such a supportive family :-)

    Hopefully you will be recovered enough to go back to work soon. x

  • That's great you will have someone to stay with you. My husband stayed with me and my mum looked after my two girls, she was made redundant last year and hasn't found another job yet. I work for the NHS too, I wonder if I will go back as like you it is very stressful. I work with children with disabilities although some of these children are very big teenagers! I might explore other options or just put my energies into being a great full time mum.

    Good luck for the surgery, it's a mammoth procedure so just take one day at a time x

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