It all started just before Christmas, when I thought I had a bladder infection, as my tummy felt a bit strange down there. In true British fashion, I ignored it, as it was Christmas and I thought it would probably go away in time. It did go away, but it came back again in early January and for a week or so, I did have some proper pain (not extreme pain, but proper 'something is wrong here' pain). I told Matt about it and after a couple of days he told me to tell the doctor, as obviously something wasn't right. Once Tom went back to school in January, I called to speak to a doctor, who made an appointment for me to see her that afternoon. She said my symptoms were a bit strange for a bladder infection, so she did some investigative work - prodding and poking etc. As it wasn't my bladder, then the next logical place was my reproductive system, she managed to pinpoint the pain with her hands and we discussed various things it could be. I told her that I have polycystic ovaries so she said it was probably that - maybe a cyst had grown rather than popped, so she referred me for an ultra sound.
I had an ultra-sound about 3 or 4 weeks later. By now the pain had gone, and I was in two minds whether to cancel it or not. Matt persuaded me not to. The operator was very excited when she got a good picture of my ovaries (especially my left ovary) as she said that in her 32 years of doing this job she had never seen anything like it. I saw the screen - my left ovary had hundreds of cysts on it. She said that to diagnose polycystic ovaries she needs to see 8 cysts, so this really was extreme. She was looking forward to sharing the scans with her boss! She said she couldn't see anything sinister, just lots of cysts. She didn't know what the next step would be, maybe a referral to Gynaecology, but she wasn't sure what they would be able to do.
I then got a letter from my GP saying that she had referred me for an urgent appointment with Gynaecology following my scan. I got a call from Kendal hospital the same day. I went to see a doctor 2 weeks later, who once again prodded and poked me. By now I wasn't having any pain at all - so couldn't really help her as to where the problem was. She referred me to Lancaster Hospital for an MRI scan, and took some blood for testing.
I had my MRI scan about 2 weeks later (very relaxing - for 20 minutes you lie down on a bed, with ear plugs in listening to the radio whilst the scanner makes lots of white noise. I closed my eyes and very nearly fell asleep)
Two weeks later I got a call from a doctor saying that my MRI scans were in and that my tumour markers were normal and blood tests were normal, so it probably isn't cancer (the first time the term 'cancer' was used, I didn't even know they were looking for it!) However, they were forwarding my scans to The Christie hospital in Manchester for a more specialised consultant to check them as my left ovary looks very strange, and he wasn't completely sure what it is. In the meantime he had booked me in to see a doctor in Preston who is more specialised in this area, but I would probably need surgery - surgery! Once again the first time anything like that had been mentioned. I had to look up The Christie Hospital after the phone call - it is a specialist cancer hospital!!!!!!! It was all getting a little too serious!
The next day I got a call from 'Babs' a specialised nurse who gave me a more in-depth appraisal of the situation. Although my tumour markers and bloods were normal, this doesn't necessarily mean everything is fine. I have an 8cm area on my left ovary and fallopian tube which they aren't sure about, and cystic type matter on my womb and bladder. The consultants are unable to rule out that I may have a rare cancer called pseudomyxoma peritonei (PMP) - cancer spread by mucus in cysts and which normally comes from the appendix (my appendix looks normal) but can come from the ovaries. They have sent my scans to The Christie hospital in Manchester which is one of two specialist centres in the UK. (The other one is in Basingstoke, so I am pleased we live where we do). They will await the response from The Christie, but in the meantime they are treating it as a mass of cysts and have made an appointment for me to see a Consultant in Preston. If it is PMP, I would be referred directly to The Christie. The Preston appointment was for 17th March - two days before we go to Japan. She asked if I had any questions. Of course the first one was - we are due on holiday 2 days later is that a problem? Her first reaction was to do a big gulp down the phone! She quickly rearranged the appointment for 10th March to give us a week after the appointment to make any arrangements.
We headed to the hospital in Preston on Thursday for our 3pm appointment. (Grannie and Grandpa were on Tom caring duties for the night). It was a grim looking hospital! Appointments were running an hour late, but we eventually saw him, a doctor called Nick Wood. We thought that as we hadn't heard anything, The Christie had probably come back to the consultant to say it wasn't PMP, why would he waste his time seeing us if I was going to be referred somewhere else? The first thing he asked us was if we had heard from The Christie. Not a good start. He also asked if we wanted to see the scans - we said yes, but they hadn't been uploaded onto the system!
Basically, they still don't know what I have. He said I was the 'grey case' of the day. It could still be PMP, but it could be a mass of cysts. Assuming The Christie come back to say it isn't PMP, then I have been scheduled in for a full hysterectomy (i.e. everything out including ovaries, fallopian tubes etc) omentectomy and appendectomy on 11th April (first day of the Summer term). I will need to be in hospital for 5 days (based on averages), recovery time is 6 weeks (95% recovered at that point) and I won't be able to drive for 6 weeks. I will also have to inject myself for 28 days afterwards to help stop blood clots. I will also go in to immediate menopause! It wasn't the best conversation I've ever had, I found myself to be shaking for most of it, it was a good job I asked Matt to come with me as I don't think I took it all in. He examined me - once again no pain for me at all. I did ask how dangerous cysts are, to which he said, good question and went on to explain that they really need to see what is in the cysts, because if it is mucus they are dangerous. The only way they can do that is to go in and see as the scans can't answer that. Regardless of all that, my ovary is a very weird shape so something is happening which is wrong and they need to come out. It might even be that the consultant opens me up, finds that it isn't just regular cysts and then I will get referred elsewhere for more treatment. Mention was made of maybe having to have my bowel operated on at some stage too but neither of us can remember why or when - something to ask before the op I think!
We mentioned Japan. He said we would need to speak to our insurance company and see what they say. He said I should be OK to go as I don't have any symptoms and have obviously been living with it quite happily for a while, but he can't guarantee my health because he doesn't know what is wrong. We asked what to say to the insurance company - he didn't really know, but said that he would send me an email to help us out. I then had to see some nurses for a pre-op assessment: lots of questions and more blood tests. I also need a CT scan and ECG (if he opens me up and finds bad things the operation could go from 4-6 hours to 10 hours so my heart needs to be strong). These will be done in Lancaster.
I also discovered that Babs is a MacMillan Nurse and that I have been assigned to her and another, Val in Preston who was present during the whole consultation. I can call them anytime with any question, no question is a silly question etc etc.
It was a lot to take in, we managed to keep our composure until we were out, and then we both had a few wobbles. The worst thing is the uncertainty, we thought we would get the answers to our questions, but we didn't. We still don't know if we can go to Japan, we should be going next week. It is all going to be very very last minute. Obviously we are both holding on to the thought it is just a mass of cysts that will be removed during the hysterectomy and that will be that.
We got home, to find a letter about my CT scan being booked in for next week. We then went straight out to the Old Post Office for a drink and tea before heading home and making lots of phone calls to family: with a date in the diary, and no guarantee of any further clarification, it was time to tell everyone.
Friday morning we made an appointment at the school and managed to see Mrs Colledge and Miss Middleton in the afternoon so they are aware and very supportive, they told us in no uncertain terms that they would look after Tom. We've even been told we can take holiday in term time after the op if we wish, not a problem at all, so finally we have extenuating circumstances for a holiday in term time!!!!!!!!
When Tom came home on Friday we spoke to him. He knows I have a poorly tummy as it was the odd wack from him that caught me in the tummy that made me wonder what was up as it hurt way more than it should. He knows not to kick, thump etc my tummy. So we just told him that I have to go into hospital for an operation to make my tummy better as I have a lump in it and that I will be in hospital in Preston for 5 days. It is the truth, just haven't told him alternative outcomes. We haven't told him that maybe our trip to Japan will be cancelled, we will wait until after the first conversation with the insurance company for that. I have a feeling he will be more upset about a missed trip to Japan than my poorly tummy!
When Tom came home on Friday we spoke to him. He knows I have a poorly tummy as it was the odd wack from him that caught me in the tummy that made me wonder what was up as it hurt way more than it should. He knows not to kick, thump etc my tummy. So we just told him that I have to go into hospital for an operation to make my tummy better as I have a lump in it and that I will be in hospital in Preston for 5 days. It is the truth, just haven't told him alternative outcomes. We haven't told him that maybe our trip to Japan will be cancelled, we will wait until after the first conversation with the insurance company for that. I have a feeling he will be more upset about a missed trip to Japan than my poorly tummy!
We are now waiting for the email from the consultant to send to the insurance company, I wonder what is going to happen there, whatever happens, it is going to be very last minute.
I spent this week finding someone else to make a wedding cake for 30th April - which I did as it was looking more and more likely that I would be out of action then. Huge relief that I found someone who looks good and the Bride and Groom were very understanding, such a shame I'm not doing it though, it was going to be a good one to do.
I spent Friday finishing off cakes as far as I could in an attempt to have next week clear for any last minute panics and I'm going to say no for any cake bookings in the coming months.
Oh guess what - we spoke to the District Council this week about the proposed development - the decision is going to Committee which is great. If it makes the April meeting it will be on the 11th April!!!!!!!!!! You couldn't make it up could you! I now need to find someone else to represent us for that!
Oh guess what - we spoke to the District Council this week about the proposed development - the decision is going to Committee which is great. If it makes the April meeting it will be on the 11th April!!!!!!!!!! You couldn't make it up could you! I now need to find someone else to represent us for that!
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