It’s just two days until my operation but how did I get to this point?
The call came out of the blue. When my gynae consultant’s secretary called, I thought she wanted to say the appointment I had changed was inconvenient. But no, she wanted to ask me to come back in! Even then I wasn’t particularly worried, didn’t really have a clue why…
The consultant sat in his chair and advised me that my histology after the hysterectomy had shown a borderline malignancy. I relaxed in the chair… borderline… well, that didn’t sound too serious, did it? The consultant said he had seen this tumour before but much worse than mine so it all seemed very positive. He gave me the name pseudomxyoma peritonei (PMP) and told me he would refer me to a general surgeon.
Well, I came home and went straight on the internet. My husband wasn’t interested at all in checking it out but I read everything I could find! As I read, I got more and more alarmed. This didn’t sound very borderline to me, more like a full-blown tumour!… and the treatment! Very scary, I understand why patients call it MOAS (mother of all surgeries) but on the other hand I didn’t fancy the watch and wait scenario, not an impatient person like me!!
The consultant had said it was one in a million and my husband had said he always knew I was! I’m never lucky on the lottery so how come I was unlucky enough to get this? Why me?
I had read so much about PMP that I knew there were only two centres in the UK that treat it. I decided to call Basingstoke in advance of my appointment and ask how to get referred. I just happened to speak to a very helpful lady who advised me they would need all my test results including the actual histology not just the results.
Armed with this information my husband, John, and I set off to Kingston for my appointment with the general surgeon. I was all ready to do battle to get referred to Basingstoke but need not have worried; the consultant suggested it himself before I could get my words out!
So, “No problem”, I thought. It was now June… and I was impatient to get to Basingstoke.
OMG, So many phone calls and so many letters later… then I was told “It’s slow growing so there’s no rush…”! I was in such a state! Why can’t I see the specialist now? My appointment came through for August and that was a private one! I used to lay in bed in night and cry. I didn’t want to die, not just yet. I would wake John up at night and cuddle him and go through the whole ‘Why Me’ scenario…
Before I had my hysterectomy, my work had wanted me to postpone the operation due to the business need. It had all got very unpleasant. When I went back to work, I stunned them with the Big C word but didn’t really fill them in completely…
Now the corporate policy decided not to fund all of the consultant’s fee. What next?… More stress!!
Finally, August arrived and I saw the PMP specialist, Mr Moran. We had a long chat. Still not sure why this serious condition is called BORDERLINE for goodness sake!! I was worried I was overweight but I have always been pretty fit with it. I don’t think John wanted me to have the big op but I was up for it straight away… bring it on!
“Ok”, I said, “Let’s do the op next week”.
Oh no, it wasn’t that simple… it was deemed better to wait six months after my original op. What??? REALLY??? As you may have guessed, patience is not a word I’m familiar with.
So with the next appointment in November, I went back to work and tried to forget it. I sent off for a wristband and car sticker from the Pseudomyxoma Survivor website but didn’t join the support group. I still read everything I could get my hands on about PMP, including a very highbrow paper given to me by the hospital. Although it was a long time ago, I used to be a nurse and midwife and you know what they say, a little knowledge is a dangerous thing! Not that I knew anything about PMP or had even heard of it.
Poor John, I would read out bits to him, mortality rates and so on, what a cheerful soul I was! His answer was to take me away to every place possible… in the space of four months, we visited America twice and visited Germany. John lives for his holidays.
When I saw Mr Moran in November and he said “OK, let’s do the operation”. Although I was terrified, I was also so relieved! Did I mention that I am not a very patient person?
So from confirmation of my operation to the surgery itself has been about 7 weeks to wait. I gave work the news that I would be off for up to 6 months. Thankfully, this time there have been no problems after I spelt out how major the surgery is. Even then, one of the team leaders thought they were putting all the organs back! Oh, I wish… wash ’em off with Flash and stick ’em back!!
I felt so much better once I had a goal, to get through the MOAS. The uncertainty has been the worst part, I was so positive after I knew. I was joking I just wanted a free tummy tuck and 6 months off work!
Christmas came and I spent huge amounts of money on my family. If this was going to be my last Christmas, I would enjoy seeing their faces… of course I know it won’t be my last but with such big surgery there is always that nagging doubt you won’t wake up… you keep batting it away but it keeps popping back into your mind.
So nearly there and since New Year I have spoken to Dawn, signed up with a Pseudomyxoma Buddy and joined the Facebook group and started posting on the site. In fact, one could say I’m obsessed with the site! I have probably posted every day and it has helped so much! So much positive support. On the negative side, and I know this is why consultants sometimes aren’t keen on internet support groups, I keep thinking there are a lot of people who have had MOAS twice and that’s scary!
However, the benefits hugely outweigh any disadvantages.
Everyone at work thinks I have been so brave… I’m not brave at all, I’m terrified… and I have a very low pain threshold! I had to have two teeth out a couple of weeks ago and was in such a state I took Valium! It’s true, however, I have been joking about sautéed spleen and ovaries with onions… laughter is definitely the best medicine and I definitely have a great sense of humour.
I feel very sorry for John, he is obviously so worried about me but also his Mum is showing signs of dementia. He even got annoyed with me yesterday when I said how concerned I was for her and he told me just to concentrate on myself!!
It has been really weird until now two days before surgery, I have been more relaxed and positive than I was when I was first diagnosed! On top of all of this, my nine year old grandson, Lewis, has been very poorly. We are anxiously waiting to see if my son can donate his kidney to Lewis for his transplant in the spring. Strangely, worrying about them took my mind off myself.
So, two days time.. finally feeling very scared… I am thinking about it all day. I am very lucky though and have great support from friends and family. I think it’s fairly normal to be scared. It’s a big op but I think having a network of people who have gone through the same thing is great. I look forward to all their advice post op.
Bring it on… now I have waited seven months so am impatient to get it over with and start my recovery. I am mad about cards so I have taken all the Birthday cards into work for my colleagues until the end of May. I have the ones at home all stamped and ready for John to post. I took 2 books of stamps into work and told them to write if they can remember how.
My family is all coming over today. I can’t wait to see my grandson, hopefully he wont be too bad. Sadly, he isn’t allowed potatoes crisps, chocolate and so on but he is very sensible and knows what he can eat. My son has said he doesn’t want it to be like the Last Supper so I think there’s no medical chat today for me or Lewis!
Anyway good luck to everyone who is undergoing MOAS. The remit is stay positive, have a sense of humour, take baby steps, don’t worry if things don’t go exactly to plan and surround yourself with a network of friends, family and Pseudomyxoma survivors.
I think the phrase I have heard most often in the last two weeks is “You’ll be fine”. I’m sure I will.