6 weeks

So on Monday I hit 6 weeks since the operation and therefore should be 95% recovered.  I wouldn't say I was 95% recovered yet, I still have a pain in my stomach, am still exhausted by 11pm, and still can't lift heavy things (e.g. Tom) but I'm not complaining.  I have been walking, walking, walking and am fit as far as that goes.  I can't run though - as soon as I do, it feels like my tummy will split in two!  My new slimline figure is getting me lots of compliments (never have I been told how well I'm looking by so many people) and makes clothes shopping a joy.  Mentally I'm getting there, I might drift off every now and again, but on the whole I am happy and not anxious which is lovely.  I'm sleeping well too - which is an obvious sign that I'm doing ok.

I went to see Dr Morgan yesterday - she was running 30 minutes late and then my appointment ended up being 30 mins long so I dread to think how she was doing by the end of the day.  We had a really good chat about everything.  She can't help with any information on how the cysts replicate / grow, where they come from, timeline for recurrence etc etc because basically no-one knows.  She didn't know that the surgeon had left some cysts behind (she hasn't had an operation report yet) and she doesn't know if this is a problem, whether they can grow from there or whether they will just stay where they are.  Problem is so few people have had this condition that no-one knows anything about it.

She said the histopathologist in Preston was really helpful and quite excited by me, but the lady she spoke to at Christies was very snooty and very hard work!  Because my case hadn't been discussed at the MDT yet they were reluctant to release any information to her.  Dr Morgan has asked if I can have HRT - but they haven't confirmed one way or the other.  I might hear from Christies or I might not - depending on what they decide at the MDT.  I doubt I will hear from them, I never have all through this process!  I think my case will be - oh look at this, isn't it interesting, it's not cancer, the end.  That's what I hope anyway.

I asked her about any side effects of not having an omentum, she completely took me by surprise by telling me that the omentum actually grows back.  It won't grow back in all its former glory, but it will grow back in some form, meaning that there will be something in my abdominal cavity to pick up any future infections, which is great.

I laid on a bed and she gave my stomach a right good squish and squash to try to determine the source of the pain I have on the lefthand side (so much so that my tummy really hurts today!) She said it wasn't anything from inside, and was probably as a result of my muscles being split when they wrenched open my tummy with metal clamps (such a lovely thought!).  It will recover in time.  She gave me the go-ahead to do pilates and said I should be able to do Boxercise etc in about 6 weeks time - but I would know when is good.

I explained my toilet problems, I took a sample with me which she tested - to which she said 'Full House!' yes I had a proper full on bladder infection, so she's given me antibiotics for that (double the amount I need in case I get another one - apparently it is very common after a hysterectomy and if I keep getting them then I have an over-reactive bladder for which there is treatment - but we will cross that bridge if we come to it!) and she has given me loads of sachets of stuff for constipation. Did you know that a prescription costs £8.60 these days - wow!  Took me by surprise - can't remember the last time I had a prescription - but I'm sure it was when they were about £6, so quite a while ago!

I explained to her that Mum has osteoporosis and with not being able to be put on HRT is that a problem? She's going to send me to have a scan for my bone density to see what my base line is and then advise all the non-drug things I can do to try to keep it as high as possible.

The bottom line is that all my notes are being sent from Preston to Lancaster and I should hear from Lancaster by September - I'm not urgent anymore and with the 2 week schedule in place for all suspected forms of ovarian cancer, it will be a while before they get round to me - which is fine.  She assumes they will scan me from time to time to check they haven't reoccurred.  She wasn't sure what type of scan, obviously I can't have regular CT scans due to the amount of radiation involved.  It might be that I get transferred from gynae to general surgeon as if they start multiplying around my liver that's very much not a gynae problem.  She said what will happen is that the Dr in Lancaster will get my notes and the first thing he will do is google my condition because he wouldn't have heard of it!  A case of the blind leading the blind!  She thinks they will put a management plan into action to make sure I'm monitored incase of reoccurrence.

Anyway, I'm quite happy about it all, I know I've got some cysts behind my liver but hopefully now all their friends have gone and female hormones are gone, they will just get lonely and disappear.  There's no point worrying about it, they are only benign anyway and if they come back, they will just have to take them out again.  I've recovered once, I'm sure I can recover again.  If they do come back I would prefer sooner rather than later though, don't fancy a big op when I am 20 or so years older!

6 weeks good growth with the yellow nail on top - could it be related?

Oh here is a strange thing that has happened since the op, I have no idea if it is related, but it is worth noting it just incase of a reoccurrence.  Many many months ago I noticed that one of the toenails on my left foot had gone white.  Completely white - it was very strange, I had never seen them do that before, it was like someone had drawn a straight line on the nail and coloured it in.  I showed it to Matt, he didn't think it was much and thought that in time it would go.  I didn't go, in fact the toe nail turned yellow and thick and when I cut it, it just crumbled.  I know that reflexologists believe that the foot reflects what is happening in the body so I did some googling to try to find out more but drew a blank.  Having had this weird toe nail for quite some time, it now looks like it is recovering, the new growth looks normal.  So, the big question is could it be related to my condition?  Could it have been telling me something was wrong, and now I've had the op to remove everything it is now telling me I'm fine.  Or is it just a coincidence?  I know the human body works in strange ways - so it could be.  If this toe nail recovers and then goes strange again I am going to the Dr for a scan just to be sure!

Oh and for the first time in my life my urge to stop eating when full is working!  Having eaten through the urge for a life time, now I will sit down to a meal, look at it, think yummy, tuck in and then I get the urge and have to STOP eating.  I then look at the food on the plate and am no longer interested in it any more.  It is strange, almost as if the surgeon pressed a reset button on my stomach whilst he was in there.  I'm not eating much more than Tom at the moment and doing loads and loads of exercise but not feeling hungry.  Hopefully it will stay with me as then I will hopefully be able to keep the weight off.  I'm worried that when I start working I will put the weight back on again as I won't be as mobile as I am now.

So anyway time to draw a line and put all this behind me.  I will try not to mention it again and look forward to enjoying life even more than I was before.  I'll mention if I hear from Christies or what happens at Lancaster but as far as I'm concerned I just need to do as much exercise as possible to get fit (and keep weight off).  I have a target date of July 4th to return to Boxercise - if I make that I will be very happy and it will mean I am 100% recovered.

SATS and Hayfever

Week 6 - still quite red

So this was my last 'official' week of recovery.  Recovery is pretty much there.  My scar is still quite red and I still have a pain on the left hand side of my tummy, but I am energised, able to walk a long way without any trouble, my left leg isn't tugging as much as it was and mentally I'm doing much better - especially since getting the letter from Dr Morgan telling me about my diagnosis.  Somehow it is a big relief to have a name for my condition, silly really as it is just a name, but it is good to know it.  I have of course been googling it and found incidences of it around the world, but of course very little info on how it develops / behaves etc mainly because I don't think one Dr has seen the condition twice, making it hard to study and understand.  However, and here's a big however, I have had real bad bladder trouble this week.  It is a strange phenomenon, I can't quite work out what triggers it, but basically I spend all day with the urge to wee.  It gets worse after doing a wee, when my bladder is empty, especially around midday.  Then nearly every fibre in my body is screaming at me to do a wee, it is debilitating!  Rivers of urge run through my body and it becomes a fight between mind and matter!  I don't feel like I'm going to have an accident, but the sensations that run up and down from my bladder are very very strong and impossible to ignore.  It was pretty bad when we were in Leeds, I think I went to the loo about 4 times in an hour - I didn't need it for 3 of the times, but it was the only way I could get any relief!  It seems that once my bladder fills up again it the urges ease, but that is so counter-intuitive, it is difficult, especially if I am near a loo - I just want to sit on it to try to relieve the sensations.  It does mean that I have been walking quite strangely and making lots of groaning noises as the waves of sensation pass through my body.  It's not fun and is getting really annoying.  It's getting to the point where I don't want to drink so I don't have to go to the loo which obviously isn't good.  I'm hoping Dr Morgan can come up with a simple fix on Tuesday.  I have read that a lack of Oestrogen can cause this (female sex hormone made in the ovary).  Oh hum, lets see what she says...

The view from Arnside Knott

Monday saw me doing the waterfalls trail again - mainly because I didn't have anything on and needed to kill time. I did it the other way round, this time - just for variety's sake.

Tuesday to Thursday, Tom had his SATS.  The school here have managed the whole SATS thing very well - they didn't make an issue of it, they got the kids used to doing 'quizzes' in the classroom and tried to make the whole thing fun for everyone.  There was absolutely no pressure at all put on the kids and certainly none on us, unlike other schools - I heard lots of horror stories, especially coming out of Telford of parents being made to attend sessions on how to drill their children and children being given SATS homework and tests every single day.  How awful.

Still I thought it was a little sad to go into their classroom and see the tables set out apart from each other - pencils and rubbers laid out at each end.  The class next door had been told they had to be quiet.  I think it is wrong to be doing this to 6 and 7 year olds.

Tom's hay fever returned this week - of course because it was SATS week - I always had bad hay fever for exams.  We got him some medicine, dosed him up at home, took his eye drops to school and hoped for the best.  He said he enjoyed doing his quizzes - the harder the better!

Trains passing

Tuesday saw him doing multi-sports after school and Wednesday swimming.  He is the fastest in his new class for 'free-style' swimming, but the slowest when it comes to doing techniques for specific strokes.  He has certainly flown with his swimming this year - will be interesting to see if I can keep up with him next time we go swimming together.

Thursday, Matt was out of work, so we decided to have a day out.  We headed to Arnside for the day. We parked at the Knott car park and walked down to the sea, walked along the shore to the village, had a little shop and then had lunch in a new restaurant there called Gado Gado - which to our delight is a place that specialises in South East Asian food - so you can get sushi, green curry, rendang etc etc, dishes from Thailand, Vietnam, Malaysia and Japan.  They do English breakfast though, so Matt had a bacon and sausage bun whilst I had a prawn, avocado and spicy Asian dressing wrap thingy.  Very nice it was too.

Hairy coo

We then walked up through the village to the top of the Knott including a field with some hairy highlanders to enjoy the view of the estuary and the Lake District mountains in the distance.  This is a short walk, but a very rewarding one.  The views are very very good.  We got to the car just as the rain started, so we were very smug in reading the weather and timing everything so well.  We then popped to Booths in Milnthorpe for some bits before heading back in time to pick Tom up from school.

Friday, Tom had a party day at school.  (Apparently Nicky Morgan said not to celebrate the end of SATS, but Ms Middleton decided to ignore her!)  They had a vote over what flavour cake to bake, which Mrs Wilkinson did for them, they all brought in a soft toy, played party games and had a rounders match.  What a lovely way for them to end the week.

Nik and Morecambe Bay

Tom got put on free reading today - means he has finished the structured reading programme and can now pick out books to read himself.  Proper reading books, the sort you get in book shops rather than the educational ones.  He's started off with a Horrid Henry one.  Anyway he was chuffed to bits.

It was also film night at school so we were back at 6pm to try to tame the chaos of lots of excited children with lots of pocket money to spend on sweets and treats.  Not sure anyone actually watched the film, but everyone enjoyed spending their pocket money, so much so that we sold out of everything!

Saturday wasn't a particularly nice day so we decided to head to Leeds for the day.  The boys got their train fix and I got the chance to go to Bravissimo to get a new bra (my current ones are too big!).  We had lunch at The Brewery Tap which was good - a platter of meats and sweet potato chips.  Tom managed to convince us to buy him a new T-shirt from Fat Face, and I bought a new dress from SuperDry (a medium nonetheless!).  I'm liking my new figure, makes shopping far more enjoyable.

Playing at Storrs

Sunday, Tom went to cricket practise in the morning, Matt went to play cricket in the afternoon, whilst Tom and I went to Storrs Common so he could play on his bike.  He was pretty good - I told him I couldn't help him up the ramps etc, he would have to do it all himself and I wouldn't be able to lift him up if he fell down.  Lo and behold!  He suddenly was able to do ramps he has needed help with before and he didn't cry when he fell off his bike (about 3 times)!  Just goes to show what is put on!!!!!

Diagnosis!

So, today my GP sent me a letter outlining what she has discovered from various calls to Preston Hospital and Christies Hospital - my case hasn't been closed yet - which is what we had been led to believe!  Turns out that my case has only been closed by Preston because it wasn't cancer and they are a cancer team. Christies still have it open and have in fact been involved with confirming my histology as it is so complicated and unusual.

So, my diagnosis is that I have Benign Cystic Mesothelioma.  I thought pseudomyxoma was rare - being a 1 in a million disease, but apparently the condition I have has only been reported 153 times in the world (as of 2013)!!!!!!!  So, if you thought I was special, then you now know that I am!

It most commonly affects women my age - some say it is linked to asbestos exposure - but pretty sure that's not the case with me, or in response to chronic irritation such as prior surgery or endometriosis - neither of which is me either!

It develops in the pelvic area and or abdominal cavity including the omentum, uterus, bladder and rectum and in extremely rare cases the liver (eek - that's where he left the cysts!).  Treatment is surgery, so I'm guessing I did need it after all.

There are two types of this disease, a cancerous one and a benign one.  I have the benign one, there is only one case in the world of a patient passing from the benign version of the disease and that's because they didn't have surgery.  However, 50% of all patients will experience a recurrence of it after surgery, they don't know what triggers it or makes it reoccur, so my GP is pretty sure I will have to have scans for a while.

Christies are also going to discuss my case at a MDT meeting soon (multi-disiplinary team) and I might hear something from them if they decide on anything.

There is a suggestion that female sex hormones can trigger the development of the cysts, so no HRT for me for the moment.  My GP is waiting to hear back from Christies on whether I can be given it or not.

Anyway, it is a relief to be given a name.  Why Preston couldn't do this for me I don't know - I did get a letter from them this week, but it gave very little information and confused me more than clarified anything.  Apparently one of my treatments was the 'excision of peritoneal cyst'.  Does that mean I had a big one in there as well, my understanding was that they were all small cysts?  Anyway good old Dr Morgan has done it all and I have a much clearer idea of what has happened to me.

The roller coaster still seems to be in operation, but I am pretty happy that there won't be any huge ups and downs now.  Hopefully a case of monitoring the cysts via scanning, hopefully they will come to nothing.  Let's hope so anyway, I really don't fancy an op around my liver!

Ghibli & Cricket

So last week was a sort of normal week - as normal as it can be when you aren't working and are resting on your bed for a good 2 hours or so a day.

In fact I can't actually remember day by day what I did, so I guess normal life has pretty much resumed.  I have spent a lot of my days walking.  So much so that by Friday I felt like I was ready for the waterfalls walk, and did it without any trouble (all exercise is much easier when you have lost a lot of weight).  I managed it in 2 hours which is half an hour longer than usual, I was happy with that.  I am back on cooking duty, laundry duty, back to going out for lunch at the weekend and out for tea on a Friday - I just eat less.  That's pretty much my normal life, except the absence of cakes - they will come after half term.  Can't say I'm looking forward to making them again - but hopefully once I start my cake mojo will come back.

Week 5 - still a bit red...

So how is recovery going?  Well I feel more or less normal except sometimes my scar hurts (when I have done too much walking and it has been jigging up and down a little too much!).  My left leg pulls when I walk, but I just ignore that, and there is an area to the left of my scar which hurts to touch - has been like that since week 2 and doesn't seem to be getting any better (hence why I am wearing leggings and tunics at the moment and not jeans - any zips, buttons, waist bands etc increase the pain from this area.  My toilet activities are should we say interesting!  I constantly feel like I need a wee regardless of whether I have just done one or not and the other activity is still an all body event and quite disturbing.  Apart from that all is well.  I am eating more and it doesn't seem to hurt at all now when I eat, although I do seem to fill up quickly and when I get the I'm full sensation, I don't want to eat anymore (unlike before my op, when I could happily eat through it).  I'm able to eat more than just soup for lunch as well which is good - I was beginning to get bored with it.  My weight seems to have stabilised - Matt isn't happy with it - he says that I don't hug well anymore, but I am happy with it and hope to stay like this for at least the summer, would be nice to have one summer wearing dresses etc without feeling like a beached hippo!

We had a relatively normal weekend.  We started it in traditional style by having a drink at The Old Post Office and then we decamped to the new Indian restaurant in the village, which was surprisingly good.  Very friendly service and good food.  We bumped into Mrs Colledge, and Grandma Jan whilst there (and just missed Janine!).  I had had 2 glasses of wine at the OPO so was very happy and pretty tipsy.

Totoro

Saturday we had an easy morning.  We then drove to Carnforth to get the train into Lancaster, ready to see Totoro at The Duke's.  First stop was The Novel Cafe for lunch - a bagel for me, a panini for Matt and a huge jacket potato with beans for Tom.  We then headed for the cinema where Tom got changed into his Totoro onesie and we met with Sal, Rich, Caitlin and Lottie to watch it.  This was the first time any of us had seen it on the big screen and it was lovely - I think we saw some new scenes as well which was good.

Tom and Caitlin

Afterwards we all headed to The Borough - a pub we didn't know existed for tea.  It was good, Matt had a great looking piece of pork belly, Tom honey roast ham and I had a veggie tagine.  It was a good afternoon - all the kids got on well, Caitlin had just had a second set of grommets fitted on the Friday (new ones that stay in for 3 years) so did remarkably well, especially as we saw her ears - they were full of blood - eek!.  We got home around 7pm.  Tom actually fell asleep in the car on the way home which is quite unusual these days.   Matt and I then settled down to prosseco, cheese and crisps whilst watching Eurovision which was appallingly bad this year!  Oh hum, at least the cheese was good!  Oh, obviously my scar was enjoying Eurovision as the knot that has sat at the bottom of it fell off during it.

Sunday, Tom played cricket on the community field in the morning - he got his new cricket shirt today and looks very very smart in it.  We then went to the New Bernies for lunch and were very surprised to find cheap, quality food on offer, it is basically a greasy spoon, but a good quality one.  Problem is that it has very very bad kerb appeal and the inside is very bare, lots of empty cupboards etc.  Most people walking by, would walk on by as it looks so dishevelled, but they are missing a treat, I hope the owners realise this and tart it up, as they could be missing out big time.  They just need to decide on a theme / market to attract and go for it - lets hope they do and they don't go bust!

Enjoying the sun

The afternoon saw us in Westhouse for Evie, Lauren and Freya's birthday party.  It was a dance birthday party, the lady who did it was brilliant and got the children involved immediately - all were up for it and joined in.  It was obvious we were surplus to requirements so we decided to go for a cheeky drink in the pub garden at The Bridge so we could enjoy the sunshine.  Very nice it was too - I'm very much enjoying spending quality time with my hubby at the moment - he's certainly the love of my life.

We got back to the party to find Tom being attended to by all the mums - with an ice lolly on his knee.  He had been climbing a wall and a top stone fell on his knee.  There were a lot of tears but no blood, so I don't think it could have been that bad.  However, the party spell had been broken, he didn't want to join in anymore and was more interested in feeling sorry for himself.  Oh hum.  he came home, had a hot bath and went to bed very tired.

Happy Birthday!

So, I had the best birthday ever!  There were a number of contributing factors: the fact I don't have cancer and therefore didn't have any anxiety might have been a big one!  Also the weather was just glorious - it got up to 25 degrees, with blue sky all day and Matt was free for the day.  What could be better?

Matt asked me what I wanted to do - I wanted to go for a walk in the Dales and decided on the Ribblehead circuit.   We set off at 10.30, it was a magnificent day, and not too hazy considering it was so sunny.  It was very windy, but unusually for Yorkshire, it was a warm wind.  Before too long I had taken my jumper off and was wearing a strapless top and feeling hot - in May - on my birthday????!!!!!!

Baaaaaaaa

We did the walk easily - my stamina has really come on in the last week, however, my scar still hurts.  I feel like I need to put it in a corset or something to stop it jigging up and down when I walk.  I guess because it is so long (I've just measured it: 9 inches / 22 cm) and stomachs are round lumpy things (well mine is anyway) it is always going to jig up and down.  Something also happened on the left side of my body near my leg because it always feels tight to walk on my left hand side and it doesn't really loosen when I walk.  The bit which is tight seems a long way from the operation area, however, all the pain I experience is on the left hand side of my body so I guess something happened / got cut there.  I have no idea what though as I would have thought everything was symmetrical that he took out other than the omentum and appendix and the appendix is on the other side.  Anyhow, I managed the walk just fine but I wouldn't have wanted to do anything too much longer.

Having lunch

We then headed up to Hawes and had lunch outside at the Wensleydale Creamery, having half a soup and flatbread each.  Very nice it was too.   Just as we were leaving Hawes, my phone went.  It was Dr Morgan - I knew she would come through!  She asked with trepidation what my news was and was flabbergasted when I told her!  She then of course asked what it was then? I told her inclusion cysts - she didn't sound convinced.  I explained our experience at the hospital last Thursday and she agreed it was unsatisfactory.  She said that she would make some phone calls to try to get to the bottom of it for me.  In the meantime she was very happy for me and she told me to enjoy life and do all those things I had put on my bucket list as a result of having a possible terminal diagnosis over my head.  I'm going to see her in two weeks time, when hopefully she will have some answers for me.

Funny thing is I hadn't made a bucket list. I am lucky in that I have had a fantastic life, I've experienced loads, travelled the world, done some mad things, lived in the city, done the business woman thing, escaped from doing the business woman thing, married a lovely, sweet man, had a child, decided on where to live, what job to do etc etc.  Who could ask for more?  I certainly didn't have any regrets or 'what if' scenarios going on in my head.  I was just worried for Tom and Matt - if the worse happened I wanted Tom to have clear memories of me, and I wasn't sure if he was old enough for that?

Look at that sky!

Being given a possible cancer diagnosis is very lonely and very scary place to be.  However, I have been lucky to have had some fantastic support and it looks like we've come out of it unscathed (but not unscarred!)  I think Matt and I are closer as a result - he has really been a rock, I couldn't have asked for more, we have had many nights cuddled up on the sofa, drinking wine and just enjoying being held by each other - he has provided me with so much comfort.  On release from hospital he didn't allow me to go anywhere by myself and held my hand everywhere.  He is only just beginning to trust me to go out by myself now.

My favourite boy in his favourite place

He's also had to turn down a lot of work to be able to visit me in hospital, look after me etc, all of which I appreciate, it would have been a very different experience if he went out to work - the transition from hospital to home would have been much harder.  He has also had to deal with his own demons too.  We have had a chat about our worse fears, we were both in very dark places at some stages during the process - they will inevitably leave their marks with us, but hopefully we will be stronger and appreciate the good things in life more now as a result.

The stream in Barbondale

I have also had some fantastic friends around supporting me, especially Janine.  Without Janine I don't know what we would have done.  Always popping round for a drink, allowing us to ramble on, coming to the hospital to visit.  What a diamond she is.  I want to get her something to say thank you, but can't think of anything appropriate - nothing would be good enough!  Oh and get this - I told her that I got some vases for my birthday but no flowers, so she went out yesterday and made a special trip somewhere to buy me loads of flowers to put in the vases - this after she had already given me a voucher for The Old Post Office, and this is a lady that doesn't have much money!  She really is one of life's amazing golden hearted people.

Anyway, I've digressed!  It was good to chat to Dr Morgan, and hopefully when I see her in two weeks time we will know more.

The new skinny me!

After the phone call was over we decided to head back home via Dent (ice-cream break for Matt) and Barbondale.  We had a very nice play around Barbondale, it was looking it's best and the water was so low that you could walk across the streams.  My heart by this time was full: full of love for life, for Matt, for good friends, for good weather, for scenery, quite simply for being!  It really is a magical place.  Matt wants his ashes scattered here, I think this is a good idea, I wouldn't mind to end up there either.

We then headed home in time to pick Tom up from school.  We were then back to regular family life, sorting out dinner, Beavers etc etc.  Tom actually sewed a badge on to his blanket in Beavers - not bad for a first attempt - he didn't stab himself and the badge is securely on the blanket.

Anyway it was a lovely birthday - a lovely stress free, anxious free day.

Unwinding

Relaxing after the diagnosis

So, it has been a strange old week.  I spent the first half of it thinking I have cancer and taking it easy and the second half of the week wondering what on earth has just happened to me.  It has taken a while to start the unwinding process.  On Thursday, even though there were loads of tears, I wasn't actually happy, more numb!  Friday morning at school, everyone was happy for me and once again I couldn't feel it.  In fact, I messaged Mandy and asked her to come round as she would know how I was feeling.  Thank God for Mandy - she put me at my ease - she said that she was exactly the same, she didn't really react when she got the all clear either, and she got hers in hospital about 2 days after her op.  She said that it took years for her to properly get over it.  When she left I felt soooooo much better.

She did tell me to book an appointment with Dr Morgan though asap so I could talk it over with her and get the answers to all my questions.  I did try - the surgery told me that the first available appointment with her was the end of June!!!!!  She told me that she had put on my notes that if I was to call that I was to be found an appointment with her - they said those notes didn't exist.  What is it with Dr's receptionists?  I was about to start crying down the phone, in the hope that would work when she said she would let Dr Morgan know I called and then leave it up to her whether to call me back or not.  I'm pretty sure as soon as she sees I've called she will call me back - let's hope so.  I have so many questions to ask - but the most pressing ones are about my toilet activities because they certainly aren't normal.  I did mention this to the Dr at Preston but she wasn't interested, as long as I was doing them she was happy, but I'm not happy with how they are occurring.  I spend most days feeling like I'm desperate for a wee when I'm not and the other activity is an all body event, very painful, so much so I feel sick and I'm eating as much fibre as I can!

Friday night tea in The Old Post Office

I have started drinking again in the evening and this is helping, I am feeling a lot more relaxed and am now happy rather than numb.  On Thursday night I managed 3 hours sleep, Friday night 5 hours sleep and Saturday night 7 hours sleep so I guess that in itself is testament to me unwinding.  Also my mindset has switched I now feel I have my body back.  It feels like my body has belonged to doctors etc for the last month, examining me in very private parts, do this, don't do that, take these drugs, drink this, lie flat, don't eat, eat for hunger only, bed rest etc etc, they've cut me open, taken lots of bits out, caused me a lot of pain - and I let them, all in blind faith that they were doing the right thing.  It is almost as if I was a caretaker but they owned it.  I was good in that I took on board all the advice, but I was out of control, others were in control.  As of Thursday, I feel like I've been given control back.  If I want to go for a long walk I will, if I want to drink I will, if I want to go out I will.  I'm not ill.  In fact I never was ill, I was made to feel that I was ill, but I wasn't!

Captain for the day

My appetite is still pretty bad.  Put simply, I'm never hungry and have no interest in food at all.  I am eating because I know I have to, but I don't get any enjoyment from it.  Sometimes I get pain in my stomach when I eat, but sometimes I don't.  I think Matt is beginning to worry (I know I would worry if it was reversed).  It is very strange.  I have spent most of my life obsessing about food, always thinking about the next meal, conjuring up meals in my head, snacking here and there, wishing I could cut down, and now I will walk into a supermarket, look at all my favourite things and be completely uninspired by it all and walk out empty handed.

The weather has helped to lift my mood too.  We have had sunshine all week, and it has got warmer and warmer every day to the extent that we are all in shorts and T-shirts today.  Friday I did the Storrs Common Walk and then went to see Susan and the girls in the afternoon - mainly to keep myself occupied.  It was a lovely afternoon.  Pat and Bob came round in the evening and we headed to the Old Post Office for teatime platters.

Waiting for the film. Charlotte, Caitlin and Tom

Saturday we had a very busy day.  Tom had his last football session - was a match vs Embsay.  He wasn't in the first team this time, I'm not surprised, he has missed a lot of practice sessions and some of the other boys have developed much more.  When he did get his match, he was made captain, but unfortunately he didn't step up to the mark, not sure what happened but he didn't have a fire in his belly to win the match and sort of left most of the play up to everyone else.  It was a bit of a disappointing end to what has been a fab season at the club, however the other players made up for it and to be honest it was good fun to watch them all playing their hearts out.

After football we travelled straight to Lancaster as we were meeting with the Ellershaws for a session of Ghibli films at The Dukes.  They were showing Laputa - Castle in the Sky today.  We got to Lancaster very quickly so were able to go to The Sun for lunch.  This is one of our favourite Lancaster pubs for food, but we were shocked to see how much the menu items cost.  With me not eating much we were wondering what would be best to do when we noticed that they do deli platter boards so we ordered one of those between the three of us which worked well. (Basically yesterday's tea again for lunch!)

Awards night

We then went to Duke's met up with the Ellershaws and watched the film.  I didn't realise how long it was - a good two hours, I was getting shooting pains up and down my stomach towards the end of it.  I was wondering whether to go for a walk or stay and hope the film ended soon / they would go away.  In the end I stayed, but it was a relief when it ended.

We came home, I went straight for a lie down - my tummy had it's own pulse by then!  Tonight was the Craven Wanderers Presentation Night, so at 6.30 we all headed down to the Community Centre for that.  It was a good night out - but boy did it go on and on and on and boy were people rude in that they were talking over the presenters etc.

It was a proper good night!

Unfortunately the children did get bored and loose interest after a while.  However, you could clearly see the passion from the volunteers, which was great.  Tom got a player award but nothing else - we didn't expect him too - too many others in his team have more passion and fire in their belly for it than him, and also he has missed quite a few training sessions due to holidays, trips away etc etc.  We got a table with the Bickerstaffs and enjoyed the chit chat and drinks.  Very glad they were there as we don't really 'know' many of the other football families (none of Tom's school friends play football for Craven).  Tom had a great time, once Jack and Seth turned up, he went playing with them and we never saw him again.  Dinner was pie and peas - Matt and Tom hoovered it up (intact Matt had two helpings) but I really didn't fancy it.  In the end I was dispatched home to rescue the bread (long story) so had some cheese and biscuits before heading back to the Centre.  Don't think we got home until about 10.30.  Tom and us went to bed at the same time - which is highly unusual!

Scar week 4

Sunday we had a lazy morning.  My tummy was hurting more than usual (from the cinema yesterday I think) so I had a lay down, whilst Tom played cricket and Matt moaned about wrapping birthday presents.  We then had a small lunch and headed to the tip in Settle to dump the Christmas tree (yes a little late we know!) and get some stuff in for a BBQ for the evening - it was such a lovely day.  We then came home and did the Storrs Common walk (well Matt and I walked it and Tom did it on his bike).  We had a lazy rest of the afternoon at home enjoying the sun.  Graham and Isabella turned up for the BBQ around 4.30 and the rest of the day was spent watching Tom and Bella play, drinking and eating.  I actually managed a decent meal for the first time and almost a whole bottle of wine!  Anyway it was a lovely evening, just what we needed.

Oh and here's my scar this week.  It is actually hurting a lot more today than it has in the past - but I guess it will calm down again at some stage.

It's not cancer!

So yesterday was a roller coaster ride.  Not sure I can cope with too many days like that.

I actually slept ok the night beforehand - I think because of the knowledge that we were finally going to find out one way or the other what the problem was.  So in the morning at the school run I was actually quite happy, it being a relief to finally be the day where we got the answers.

We got ourselves to Preston Hospital in time to go to Booths for lunch.  Here the butterflies set in - I couldn't eat my soup and gave up in the end.  We did a little bit of shopping and then collected chocolates from the car to give to the staff and Anaesthetists of the Gynae ward - I didn't stay long, I didn't wish to see the ward or staff, too many horrible memories.

We then went to out-patients ready for our 1.30 appointment.  We were ushered into a room at 2.00 and then 10 minutes later a Dr who I had never seen before arrived.  Nick Wood was on leave, so she was doing appointments instead.  I was quite disappointed, as obviously Nick Wood knew my history, and she knew nothing about me at all.

She asked if I knew my results, of course we didn't.  I asked if she knew my results - she did.  She said, I'm pleased to tell you it isn't 'blah blah blah' I didn't catch what she said.  I asked her to repeat what she said, so she said 'it isn't cancer'.  Wow!  I just sat and stared at her and Matt burst into tears!

It completely threw us as Nick Wood had more than hinted at us that it was cancer, so we were fully expecting the opposite diagnosis.  I was completely prepared to be hit with it with treatment plans etc etc.  She said that in her 9 years at the hospital she had never seen an histology report quite like it.  They tested the cysts from all the parts of my body and they were all cancer free - which is very unusual.  In fact she said she had to read the report twice, once with an Oncology specialist nurse just to check that she fully understood it but it was true there was no cancer.  What I had were inclusion cysts - cysts that my body had produced, full of regular cells, nothing at all abnormal at all.

I had so many questions, but it was obvious she didn't want to spend much time with us.  She asked if I was passing my bowels and water - if so, all would be ok.  She did mention though that it takes 3 months to completely recover from a hysterectomy - so I guess that is the date I need to look at for Boxercise etc.  She had a quick look at my scar, which she said was fine - the knot at the bottom will fall off at some stage (apparently the internal stitches take 2-3 months to dissolve) and that was that.  She said that as it wasn't cancer, I was now off the Preston Hospital list and would be referred back to Morecambe Bay Hospitals - most likely Lancaster, that I should expect a follow up appointment in say 6 months, but if I don't hear anything then I should chase them up.  We asked about the cysts around the liver, but she was disinterested, they aren't cancerous so they aren't a problem.  We were so taken aback we didn't really know what to say or behave!

It wasn't until we were walking back to the car that we realised that I haven't had any dealing with Lancaster Hospital so wouldn't be able to chase up an appointment there as I have no point of contact.  With the cysts in the liver area would it be gynae or a different dept that do the follow up?

We were finished by 2.30.  Tom was going to Finn's for tea, so we needed to kill some time.  As it was a beautiful day we decided to head to Blackpool for a stroll.  It was here that I started to cry and then the two of us were at it on and off for the rest of the day.  I was finding it hard to compute, I was relieved, but I was having trouble understanding just what had happened?  If the cysts were non threatening, did I not need the operation at all?  Matt said that I shouldn't think that, and anyway I had symptoms, and there were 100s of cysts and they would have caused trouble if not halted at some stage.  I guess he's right.  I still don't understand how they were made, or whether my body could make them again.  I do have the email address of Nick Wood - so I could email him to ask him, or I could go to my GP and ask her?  Not sure what to do.

We were both emotional wrecks for the rest of the day.  We had a drink in the one funky hipster
Blackpool bar and then went for a stroll on a pier, had a go in the amusements (couldn't get rid of my 2ps as I kept winning, ended up just pouring them into the machine to get rid of them - probably should have played the more expensive machines as I was having a lucky day!)  We then drove back to Kate's (me crying from time to time) and then had a good hug, cry and prosseco at Kate's before arriving back home.

How sweet is this?

At home we found someone had been playing with the stones on our drive - we guessed correctly that it was Janine.  She arrived about half an hour after we got back and we spent the evening drinking white wine and chatting and crying.  We didn't bother with dinner, a liquid intake tonight.  It had been a funny old day.  We went to bed and reality hit that it wasn't all over when I had to self inject again (third time lucky this time - it's getting harder and harder).  I then woke up at 3am and that was it for the night - I guess I'm still stressed and anxious, might take a while to recover from the last couple of months!  I was beginning to think the whole thing was a very bad dream, but my scar and tummy ache is testament to it not being so.

Results Day

So, tomorrow we will see Nick Wood again and hopefully get my results.  It's been a long time coming, I just want to know now.  What will be will be, but please tell us what it is and what the future holds, all this uncertainty is driving us nuts!

Busy Weekend

Football? Waltzing?

So we had a good, social weekend this weekend, but as we aren't quite en par, we forgot to take any photos of the people we met up with.  Sorry everyone!

Saturday, Tom was supposed to be playing Embsay at football, but they pulled out at the last minute as they only had 3 players.  Unfortunately Bob came over to watch specially, but never mind we got to see them practise.  We took down a camping chair so I would be able to stay a while.  I managed a good hour and a half, but then got the warning signs that I needed a lie down, so headed back home (good timing too, as it started to hail as I walked home).  Typical though - he scored a great goal about 2 minutes after I left!  His football has definitely improved - he is looking a lot more confident and wanting to tackle and looking for chances all the time.

Once the boys arrived back home, we had lunch at home and then I went for a lie down.  Debbie and Luke then arrived for the afternoon - Debbie had promised to visit me in hospital, but didn't make it so I think felt a little guilty.  It is quite unusual for her to travel by herself, so she must have felt bad.  Anyway, she was on good form, very chatty.  It took Luke a while to relax - his main hobby is gaming and he hates the outdoors, whilst Tom is the opposite.  However, in time he and Tom who are both lovely boys, managed to find enough in common to play with.  We took them for a walk round the village, and a quick drink in the Wheatsheaf.  We then returned home, to realise that it had got quite late.  Our planned dinner was chickpea curry and rice, but we didn't have enough for 2 extra mouths, plus Luke is a fussy eater so wouldn't entertain eating it.  In the end Debbie and me went to the chippy to pick up some sausage and chips and then we put it all on the table and dug in.

With Papillon at Millerbeck

Oh - get this during our chats, Debbie told me that she has a friend who had a rare form of cancer, but has got through it and is doing well.  She couldn't remember what the cancer was.  Anyway, on Monday, she got in touch with me and said it was Pseudomyxoma, could that be what I may have?!!!!!!!!  Wow!!!!  Apparently the disease hits one in a million, so she may have 2 one in a million friends!  Also her friend's birthday is the day before mine!  She was at Debbie's weddings and Luke's christening and other parties so we will have met each other, just don't know each other.  Anyway, it is good news, because if I do get a positive diagnosis, I now know of one other person who has had it and beaten it.  She's already sent me info on FB groups, support groups etc, which I will act upon if I get that diagnosis.

Tree hugger

Sunday we stayed at home.  Jude and Craig came to visit for lunch, and then Bob and Pat came after for a brew.  We didn't do much other than chat, play with Tom and eat, so not much to report.

Monday we met up with the Watsons at Cafe Ambio at the auction mart on the M6.  It was a busy old place - there was an auction of old musical instruments going on which was interesting.  We had a good lunch - food there is always good - homemade.  Once the children started getting irritable we said our goodbyes.  The Watsons headed off home and we headed to Millerbeck for a couple of laps of the garden railway before heading to Fell Foot Park for a quick walk along the lake before heading home.  Tom fell asleep in the car, I was close to it!

Here's a video of Tom having a ride by himself at Millerbeck: https://youtu.be/PbUfOB3GyU0

So, a busy Bank Holiday weekend, shame the weather was rubbish!

Week 3 Recovery

Well this week hasn't been that much different to last week, although I now know my limitations and have resigned myself to a lot of bed rest in order to be able to function.

I have been lucky in that I have had a steady stream of visitors, meaning I haven't been going insane with boredom.  My daily routine is: get up with Tom, have breakfast together, do reading etc etc.  Matt takes him to school, I lie down, until someone visits.  Go down stairs, have a chat with whoever turns up for an hour or so, have lunch (soup) and then go for a lie down.  Get up in time to do the afternoon school run, do school run and then make dinner (very simple), spend time with Tom, have dinner, put Tom to bed and then collapse on sofa downstairs.

It's not the most exciting of routines, but it seems to be working at the moment.  Some days I'm more tired than others - for no particular reason.  I have made a conscious effort to reduce the amount of painkillers I'm taking this week.  I'm down to either one or two lots a day depending on how much it is hurting.  The scar is fine (apart from the bottom bit which tugs and stiffens up a bit) it's my internal tummy that hurts - especially the left side away from the scar, something definitely happened to it during the operation - not sure what!

My eating has got better and appetite has increased.  The problem is that anything solid hurts.  About 15 minutes after eating something I get a pain that takes my breath away for a minute or two and then I'm ok again.  It sorts of puts you off eating anything big.  Luckily because I am so dormant during the day I don't need to eat much to keep going.  One good thing is that my bowel movements have finally become normal this week - so my stomach is functioning properly.

My sleeping isn't particularly great - but then my tummy hurts so how am I supposed sleep through that?  I did manage to get a couple nights of 6 hours sleep, but have gone back to 4 hours again.  As I'm not that active during the day, it doesn't really matter - although I have found myself to get a little irritable with Tom first thing in the morning which isn't good.

Everyone keeps telling me how well I'm looking - but I think most of that is the fact I have lost so much weight as everyone keeps calling me 'Skinny Minnie'.  I'm also wearing very different clothes to normal: leggings and tunics with no buttons / zips etc  as apposed to big baggy jeans and t-shirts so people are seeing my legs for the first time ever!  I've lost a stone since we got back from Japan - must be the fastest weight loss I've ever experienced!

Self injecting is getting tedious now as well.  I will keep going to the end, but it is hard.  The actual piercing of the skin and plunging of the needle into it isn't the problem - that doesn't hurt although it does take some courage, it's when I push the liquid into my body - that bit really stings, and it stings for a good 10 minutes, it's the knowledge of that which makes it difficult.  Also, I managed to hit a blood vessel the other day and got quite a bit of blood and therefore I now have a big bruise in the injection area which doesn't make it any better or easier - should you inject in a bruised area or not?

Everyone keeps asking me if I know what is next etc or what my diagnosis is? My appointment is next Thursday 1.30pm, until then I am completely clueless.  It could be that the cysts were harmless and now everything has been cut out will stop replicating.  Or it could be that the cysts were cancerous.  The fact he left some cysts in around my liver makes it harder - will they need to come out at some stage?  If so, does that mean another operation?  I looked up the location of a liver today - it is much higher than I thought - so if it is an operation - it will be another scar I think.  I guess the best to hope for is that they decide to monitor my cysts from time to time to check they aren't doing anything bad and leave me alone for a while.  It will be a nervous wait for the appointment on Thursday - but hopefully we will finally have some answers which will be good, one way or the other  - at least we will know what we are dealing with.

It's certainly healing

I am still getting lots of cards and presents, can't quite believe how many people have been in touch - I see everything as early birthday gifts, I am very touched by everyone's thoughts.

I am slightly frustrated in that I don't feel anymore recovered this week than last week.  I still get tired very quickly, still not walking huge distances, still spending a lot of time in bed.  Next week will be week 4, if I am to be 95% recovered at the end of week 6 (which is what he said) surely the recovery process should start speeding up?

Oh and here's my scar this week - less scabby than last week, but still not pretty!

Oh and how is this for weird?  Ever since I gave birth to Tom I have had a craving for bubbles to quench my thirst.  If a drink didn't have bubbles, it was pretty much useless.  I therefore spent all my time drinking litres and litres of sparkling water and diet coke - those being the only two bubbly drinks I liked with no calories.  Since having the op, I no longer have a craving for bubbles, I can take them or leave them.  I ordered my usual 8 litres of sparkling water on the Asda shop when I got back from hospital and they are still here, I don't wish for it.  I'm still on the diet coke - but that is more to do with keeping headaches at bay (over-reaction some might say) and because it has some taste - I certainly don't guzzle it like I did beforehand.  I'm back to drinking Ribena and being perfectly happy with it - whilst before I had Ribena only when we had run out of bubbles.  Maybe my cysts were full of sparkling water - that would be a good outcome!