My hysterectomy and oorphectomy experience – part 2

Day 11 – Generally feeling good, I slept better last night. My abdomen is still tender but ok. I’m now working on walking upright again, with abdominal surgery there is of course a natural need to hunch a little for the first few days to protect the incisions. Now I’ve healed enough to want to work on posture and holding my core in while I walk. I’ve been doing pelvic floor exercises since day 3, now I’m adding in gentle core exercises such as bridge, single leg table top and double leg table top. I’m still wearing compression socks but have some fun ones now.

I have a very definite headache but I have a feeling it’s not connected to the hysterectomy and more likely connected to middle son who has been coughing his lungs up for the past few days and complaining of a sore throat. Without sounding too unsympathetic, boy the last thing I need right now is a cold. Coughing and sneezing would not be good!

My biggest concern right now is when the vaginal stitches dissolve, the consultant mentioned that there is 1 to 3 % risk that when they do a scab can fall off from the incision that causes serious bleeding. It’s around the 10 day mark the stitches come away so round about now! After our past few years of medical rubbish the small risk seems huge!

Day 12 – I found a large lump in my left breast last night, around 2cm that was a hell of a shock. Because we are with Bupa I’m seeing someone this afternoon. Back to the hospital it is then!

Day 12 – later that day, thankfully just a cyst a 3 cm one! The guy drained over 7 ml of ick from it. Ew.

Day 13 – Slightly tired today, but I was invited out for lunch at a friend’s house with a group of fabulous women. I feel very blessed to have some genuinely amazing women in my life. Having strong loving women in your life makes such a difference. The rest of the day was cooking, walking then resting.

Day 14 – I slept better than I have been for a while, I only woke up a couple of times to pee. I’m assuming the peeing a few times a night is a combination of pelvic floor damage and low estrogen. I woke up feeling sick though, I hope it’s just a thing and not that I’ve picked something up!

My abdomen outwardly continues to heal well and the incisions are slowly fading.

Day 15 – I started spotting a little, nothing dramatic and it is around the time that stitches would be dissolving and it can happen as part of that process. I’m watching and waiting, if it gets worse I’ll of course go to a doctor.

Day 16 – still spotting and my waswomb (the bit where my womb was but no longer is) is sore today. I think it’s part of the healing where nerves are waking up. I’m feeling tired generally and my joints are aching, I feel quite emotional today also, like I’m on the verge of tears for no reason. I’m not sure my hrt is quite right. Really not feeling enthusiasm for life today! I’m seeing the hrt specialist the week after next, hopefully he will be able to tweak things to get me back to feeling normal. My husband is away for work and I’m very much feeling the pressure of needing to be “normal” and keeping on top of things when really I’m very far from normal as yet.

Sugar and booze wise I’ve stuck with my commitment to this fundraiser even though god I would love to have an easy option right now food wise. Or an eclair. Like I really want an eclair so badly right now.

Cat is helping by trying to trip me on the stairs.

If you find anything of interest or use in my blog please consider sponsoring me and help work towards a cure for Cowden Syndrome. Thank you.

https://www.justgiving.com/fundraising/sugarfreeyear

If you’d like to follow me on Facebook that would here:-

https://www.facebook.com/cure4Cowdens

My hysterectomy and oorphectomy experience – part 1

Day 1 – operation day, it all went smoothly apart from not being able to find veins to put the cannula in. Ouch on both hands. The op itself was vaginal but laproscopically assisted. I woke up confused, sore and hungry. I had pre-ordered food that sounded sugar free. That’s the best I can do in hospital. I refused to use the bedpan and managed to get to the loo when I wanted to pee. I wanted to be on my feet as soon as possible. The staff were lovely apart from one of the night nurses who was well very classic “why are you bothering me” night nursey.

Day 2 – busting out of here..”hi doctor I’m fine yup I’ve peed, all is good, bye bye now” well it went a little like that with the addition of them ultrasounding my bladder to make sure I could actually pee. Arrived home and went for a very very very slow walk, rested then walked again. I had been given some oral morphine for the first couple of days. I just took it at bed time. The rest of the day I alternated ibuprofen and paracetamol. Oh I also added a new rule to my list of rules for this fundraiser medicine with sugar in is allowed. No way on god’s earth I was going without painkillers on the first night! Food wise it’s lots of veggies and good fats for skin repair and inflammation reduction. I’ve always believed that diet is do important for pretty much everything. I don’t assign magical properties but it definitely forms a building block of health.

Day 3 – I pooped and it didn’t hurt and my insides didn’t fall out! Result. The air in my chest and wind generally is bothering me. The trapped wind is making my abdomen incredibly uncomfortable as it’s around where my uterus was removed. The feeling of air in my chest cavity is just bizarre. Did you know they inflate you with laproscopic surgery so they can see inside? Very clever but after feels really weird.

Day 4 – Generally feeling well, I’m walking daily a couple of times a day making sure I’m at a pace that doesn’t hurt. My brain is not working on full power and my short memory is shot.

Day 5 – Still feeling ok and mood wise very stable and but hot flushes are hitting with a fury. I’m now just taking paracetamol and ibuprofen at bedtime. As I’m upping my walking I want to feel connected with any pain so I know when to stop. I am still of course tired at various points in the day. Imy the wonderful woman covering my classes popped by with a card from my students which was super sweet.

Day 6 – walking is going well, I’m covering 3 to 4 miles a day at the moment. I’m sticking with routes that loop back close to my house in case I get tired and need to go home asap.

Day 7 – It’s my daughter’s birthday tomorrow so I need to bake cakes, this along with my little walks left me very tired. An amazing friend however dropped by with food so after I’d finished the cakes I didn’t have to cook such a huge help and relief. I’m astounding how little I’ve bruised, my surgeon must have been bloody good at his job! Cake wise I went for the same I made for my birthday, sugar free and raw food goodness

Day 8 – Tired after birthday prep but Charlotte wants to have a quiet hanging out day thank god! She also wants a take away for her birthday food, even better! This is exciting for Charlotte because she’s never had take away food. Um ever. I’ve always home cooked partly because I want to feed them all healthily and partly because I think take out is very expensive for a family of 5 compared to what I can cook in a short time. Tonight I’m going for it though. Again luckily because of my amazing friend Ali I didn’t have to worry about what I was having. I had the best curry and rice possible in the fridge. Oh and did I mention she made it all sugar free. I started on estrogen cream this morning. The consultant said I could once back to “normal” activity. I’m walking around 4 to 5 miles a day now so I’ll count that as normal.

Day – 9 hot flushes still coming thick and fast and I’m waking up waaaay too early. This is bothering me. More birthday celebrations, ate too much felt great for it though. The trapped wind and abdominal air is pretty much gone and my stomach is back to nearly flat.

Day -10 Still hot and bothered I’m genuinely wondering if this bio I’d stuff is worth the bother or if I should just take the pills from the doctor. I woke up at 5.30 after not enough sleep the tiredness ran through the day. Right now as I sit here all I want to do is go to sleep. On the bright side I am back to walking at a reasonable pace.

I stopped the bio id cream and took an elleste pill instead. I also took behind the counter antihistamine based sleeping pills. Of course this is a very short term solution.

I had a look at Garmin and apparently walked 25 miles in the last 7 days and did 75,000 steps. Mind you my way of dealing with most life stressors is to go for a walk and in the past year a run. I’ll be leaving the running for a while. Not sure jiggling my insides up and down right now would be a great idea.

I have stuck with the sugar free the medication being the exception, and of course hospital food not being an entirely known quantity. Even though right now I’d kill for a bar of dairy milk. I haven’t though thoroughly logged in my fitness Pal. There were some days it was just too much mentally.

Disclaimer- I am not suggesting in any way that anyone follows what I have been doing. This is simply my experience. Before surgery I was exercising 6 times a week, a combination of gym, running and yoga. For me getting back on my feet and moving was the natural thing to do. Each individual needs to listen to their consultant and their body. My consultant cleared me for walking immediately as much as I liked. Mind I’m not sure he entirely understood how much I like walking!!

If you find anything of interest or use in my blog please consider sponsoring me and help work towards a cure for Cowden Syndrome. Thank you.

https://www.justgiving.com/fundraising/sugarfreeyear

https://www.justgiving.com/fundraising/sugarfreeyear

If you’d like to follow me on Facebook that would here:-

https://www.facebook.com/cure4Cowdens

Self fulfilment, one wedding, a birthday party, bedroom redecorate, possible Phd/Mphill and an upcoming hysterectomy.

It’s been a week or so, mainly because I’ve been crazy busy and the chance to sit down and catch up didn’t happen. Then it seems more daunting how to begin and where to channel my thoughts. As you know I had been feeling rather down, I got caught in the trap of where my life “should” be of course which means by societal standards. Which is usually a crock of shit. But it involves ticking various boxes, get a spouse, have kids, own a house, have a car, decent career, get a promotion, better car, live through your kids, even better car, fancy holiday. It never ends, it is a fools game, I realise this but sometimes still get sucked in, still feel my worth is not as much because as a carer I am not constantly ticking new boxes.

Any way I have a technique when I get in a fug, I tend to withdraw for a while and read, I focus on inspirational stories. People who have overcome obstacles, this could health wise or most recently abuse, poverty and many other set backs as was the case for David Goggins.

He is in his own words “a crazy motherfucker” not everything in his book resonated with me, but two things that really did were his ability to just keep picking himself up and his focus on self fulfilment. When did self fulfilment stop being important? Living a life to be personally proud of, which very rarely means having the best car because we all deep down know that while shiny things are awesome they don’t fill that deep well of satisfaction that doing something you personally find fulfilling does.

My focus from now on will be just that, on the matters that fill that deep well of longing for actual meaning, teaching Charlotte, spending time with family, seeing friends and it gave me the impetuous to start putting together a research degree proposal. There is a university that is showing interest, I will let you know more as and if there is more to know.

Tricky bit recently, I went to a wonderful 50th birthday party and a beautiful wedding, both I went to sober and sugar free. I have to admit that at the buffet I picked the things that I was fairly certain were sugar free and didn’t grill the bride on the matter. Would have seemed a little dickheadish really. But both occasions nothing but sparkling water passed my lips.

I did have a really tricky few days a week ago where literally all I wanted was to eat chocolate. I wanted nothing more than to dive head first into a family pack of minstrels and devour the lot. I didn’t but it was actually genuinely hard, which I know sounds bizarre but it was.

Onto the hysterectomy, I have after many years of bleeding heavily, painfully and sometimes for half a month had a hysterectomy arranged. My farewell womb date is 4th of October. I am seeing this as a positive step, I am already perimenopausal I really don’t need another five to ten years of heavy bleeding. Of course it’s not to be taken lightly, it is a major op but the consultant seems great, I was in hospital yesterday for biopsies on the endometrial layer which went well. I’m a little “stoned” feeling today and have a sore fanny but other than that all is good.

Which is why I have spent the past few weeks furiously re-decorating my bedroom, it was previously pretty bleak and if I am to spend a few weeks needing rest breaks the environment matters. Anyway thats us all caught up. I’ll post the last two weeks natural sugars tomorrow.

Better-ish

I’m feeling somewhat better today, Generally I actually love my life. There are a huge amount of positives, I adore where we live, I have a very close relationship with my kids because life have necessitated I’m around most of the time and although far from rich I never have to worry about food on the table, or a roof over our heads.

There are times however where I have to work at my mental health, I had to when Charlotte was first diagnosed with cancer and Cowden Syndrome and every time she has a scare. I’m going to have to now coming off the back of my younger sons very serious mental health struggles. In all honesty there were points where I found his difficulties and resultant ways of coping harder than Charlotte’s cancer. With cancer it’s terrifying but there is a very set plan of action and very specific planned outcomes of each stage. The professionals speak in terms of action and reaction and hoped outcomes. With mental health it seems that getting help in the first place is a nightmare and then it’s a case of throw things at a metaphorical wall and hope things stick. For two years in my sons case nothing did. Now he seems to have started to find his way out of the mire. I’m incredibly proud of him for that. Depression is a serious illness and like cancer takes lives. I think people often forget that. He’s doing amazingly to get through it.

Anyway so that leaves me with own brain a touch fried, in the past 3 years there have been more than one moment where I thought I’d lose my daughter to cancer or my son to depression, or lose our relationship.

In a nutshell I need to work on my own mental health, I need to focus in not out. The first step to this is to step away from social media. It doesn’t help, we all know that essentially it’s a highlight reel but even within that is the reality that most people have had an easier life than ours. Not all, I know some amazing strong people who have actually had it worse, but on the whole most families don’t have to deal with childhood cancer, or a youngster life threateningly depressed. Thank heavens they don’t I wouldn’t want them to, but equally I don’t always want reminded how much of a struggle our life has been in comparison and continues to be. My husband and I have often joked that the only break we get is a bone. It’s funny because it’s true. Dark humor for the win!

So I’ve a installed a block app on phone that allows access to Facebook and Instagram only once a day, that way I can check for notices by my gym, share work posts and then step away. Only my daughter has the pin to unlock the block app. If I miss that time period either I wait till the next day or have to load the actual laptop. Who can be bothered doing that?

This means all those spare moments on the loo or in waiting rooms will be filled with reading. I’ve taken this approach in the past and found it highly effective and beneficial.

I’m going to journal again,this is something I’ve also used in the past as a tool to focus on the positive and also found highly useful.

Most importantly I’m going to make time to see friends, this has always been the most helpful to me. To work on those real life connections. As much as I back away like a wounded animal when I hurt I need people. We all do.

Finally I’m going to accept that it’s ok to struggle, we’ve been through a hell of a lot in the past few years and my role has been to hold everything together and everyone up. That takes its toll on a person. Throw in perimenopause and crazy irratic cycles even with hrt and it’s a miracle I can hold a thought. Can I hold a thought? Not sure…what was I saying?

I’ve started this as my bathroom book it’s very funny.

Oh and on a totally different note I keep having “omg I had a glass of wine by accident or popped a piece of chocolate in my mouth, I’ve failed me challenge” dreams. Ugh Catholic guilt has clearly found a way to attach itself to this year!

If you find anything of interest or use in my blog please consider sponsoring me and help work towards a cure for Cowden Syndrome. Thank you.

https://www.justgiving.com/fundraising/sugarfreeyear

If you’d like to follow me on Facebook that would here:-

https://www.facebook.com/cure4Cowdens

Trying to keep busy and holy hormone hell

So the past day or so I’ve been trying to keep busy in the midst of all this drama/trauma. It’s affecting my stress levels and blood pressure which I don’t want to start becoming a problem.

My hormones are also all over the place like ridiculously so. I’ve just had a 17 day cycle and the one before that was 22, before that 35 days. The past month I was either bleeding or building up to a bleed. Honestly I’m exhausted. The doctor is sending me for an ultrasound as there is a chance of cancer at my age and it’s always best to be on the safe side. They are also upping my hrt in a week’s time. I’m hoping that will help.

Tomorrow should be an exciting day as my daughter and I are traveling to Manchester to meet with a whole load of other PTEN gene disorder sufferers. I’ve been Facebook friends with a few for a while so it will be fab to meet them in person.

Sugar and booze wise I had a really tempting moment with the sugar just today. My husband has taken to having bags of chocolate around when he’s working, giant buttons that kind of thing. Normally I’d just dip my hand in and take one. In fact that’s such a subconscious pattern I almost did reach over!! But I didn’t. Still on the straight and narrow!

Fab sugar free find of the day has been a sugar free Tumeric Latte mix, it’s lush!