Womb (uterus) cancer

A place for people affected by womb cancer (also known as uterus or endometrial cancer) to support one another, ask questions, and share their experiences.

How long between diagnosis and surgery date?

Macmi1
Posted by

Hi Steph,

I cannot thank you enough for taking the time and trouble to go over everything that happened to you afterwards.  This is perhaps - of everything that anyone has said - the most heartening thing to me so far, basically getting back towards normal after only a few days.  "Normal" is being back in control again.

My partner echoes your sentiments of an interruption, he calls it a blip.  As a veteran of many, many ops and a diabetic too, he is doing very well at being empathetic, and hasn't once told me to pull myself out of it.  In fact, he has said he can't think of anyone worse this cold happen too, due to my total traumatic distress over the whole thing.

I understand what you say about Marsden being my rescuer, and I will try to hang on to this thought.  Its not glib.  Unfortunately, I mainly see them as interfering with a healthy person, traumatising me and making me feel rough for weeks afterwards.  My logic, practical nature and all my usual characteristics of my personality having changed.  As I sit here typing, my partner is backwards and forwards to the kitchen, trying to make me interested in eating and drinking.  (He's probably practicing for next month.)  Eating and sleeping are limited, and seem pointless.   I'm getting some fab food but it just sits on the plate.

Yes, I know I'm totally negative, but it's only honesty about the way I feel, the frustration, the trauma and the fear, and its all with me, all of the time.

You truly have helped (a bit) with your message and, believe me, a "bit" is a lot in my world right now.

A huge hug and thank you.  I need to go and find another tissue again, now...

XX

Army
Posted by

Hi Macmi1Having

 read thriugh the correspondence. I totally empathise with you as new to this site also, and awaiting a date for biopsy. In early stages of being terrified. Although I know it's the only way forward now.  It's totally the unknown and out of control that is playing all sorts of mind games. Since being referred for biopsy .I'm feeling every twinge is an issue.  Where normally I wouldn't notice them.  The lack of sleep and unable to eat now for 5 days us causing massive anxiety.  Just hoping I hear news soon about a hospital appointment to get me through thus. One way or another. 

I feel all your pain as it's the same pain I am feeling and prob pain most on this lovely site have encountered. Until your in this position it's hard to understand where people can get their courage from.  

Onwards and upwards.  The Nhs although overstretched will certainly do their best for everyone.  It's hard to have faith but it's what we need.  By what I'm hearing on here the % on here is very high for getting through this.  With only surgery. 

I am so glad I've heard others on here as I don't feel so alone.  

At home I only have myself and two boys one if which is young and needs his name to be strong which I'm finding very difficult at present 

Lots of love 

Macmi1
Posted by

Hi Army,

It's good you've found this site so early only, it's an amazing place for strength.  Unfortunately, I'm absorbing all the strength I can, and not (yet) able to give anything back.

Whilst not belittling your fears, if you are at the biopsy stage, you may yet come through with a normal result.

My stomach is in knots the whole time, I only get any relief when I swim, or sleep its muscle pain at the fear.  Again, not belittling you but I guess that's what yours is, too.

This site is so supportive, there are some amazing ladies here, will to share their experiences for the benefit of others, and I am extremely grateful for all shreds of support.

My experience of diagnosis has been poor, only in the sense of being expected to drop everything at a moment's notice, backwards and forwards to the hospital and then, when they having everything they need, they leave you not knowing what happens next until they are ready to summon you again.  Hopefully, you won't have to go through this.

Most staff you encounter will be very empathetic, which helps a bit, or a lot, depending on your character and general outlook on this.

I wish you well, in every sense.  Keep posting and reading, others will support you very well, even if I'm not able to do so.

XX

Army
Posted by

Thanks

You are supporting yourself also by writing it down and sharing your fears .that's a good  thing. Yes I still have that extra hope.  It doesnt really help at present when you're at your worst waiting to find out one way or another. .  My stomach is constantly in summersault s although I try to brave it Infront of my children.  Alone is not a good place.  Hence why I feel better coming on here for short periods. 

I'm hoping you will find your strength through your future hospital visits.  Tbh the drs messed my paperwork up and I was told I couldn't get biopsy until end of May.  When I queried thus the drs said no your urgent referral so at minute I haven't even got an appointment as such other than the one in May. 

Keep writing as it's amazing what that means to yourself and others reading.  It's sharing emotions and experiences.  

Lots of love xx

Gusbun
Posted by

I’ve been away for a while, welcome to the community. I’m sorry you find yourself here but it often works out very well for those of us with this cancer.

i waited four weeks or so till my op, from diagnosis and remain well a year later.

Have you tried e-mailing your CNS? They are incredibly busy people but are selected because of their skill and naturally caring natures. My experience is that they spend many hours a day with patients in clinic and cannot always get back quickly by phone but are more able to answer e-mails within their schedule. If you want to speak to them face to face, it may be easier to arrange this by e-mail.

There’s always someone here to listen at the community and you can also speak to a Macmillan nurse by phone through this website.

wishing you the very best

Gusbun xxxxxxxxx

Macmi1
Posted by

Hi Gusbun,

Thank you for your support, and pleased to hear you are doing well, which is also encouraging me in my own situation.

Surgery is 6 weeks and 2 days after diagnosis.  It's now, unfortunately, at the end of next week, and I am counting down the days to the last few days of the healthy, fit me, able to do as I please (including swimming three miles a week), to the trapped, painful, immobile me for the weeks afterwards, where my body and emotions will never be the same again.

I had reflexology on Friday and have a first reiki session this afternoon.  Also - although I don't actually believe a word of it - my reflexology practitioner has also got me looking a the healing power of crystals.

For me, talking doesn't help.  There is nothing now to stop the fuse that has been lit and is burning down to the explosion of operation day, and literally the fallout and consequences after that.

Nothing and no-one can save me from the trauma of an operation and cancer, but this forum is a safe place, and its very welcomed that ladies are prepared to share their experiences for the benefit of others.

Unfortunately, at the moment, I am all negative, and am taking, not giving.  Maybe my mindset with change in a few weeks.

With thanks,

XX

Gusbun
Posted by

We all deal with the whole thing the best way we can. There’s no right or wrong.

if you look back through the old discussions, there’s loads of good tips about what to take into hospital - I found those tiny bottles of concentrated squash useful as they take up very little room and make a glass of Hospital water much more interesting!

You sound very fit. This means you’ll probably get your mobility back more quickly than many, but try not to overdo it and listen to your body.

You will be different after and not all of it’s bad. I beat cancer - most other things that I used to worry about seem a lot less important now!

Thinking of you

Gusbun xxxxxxxxx

Macmi1
Posted by

Hi Gusbun,

Thank you for your support.

I'm not in denial but I really can't grasp that i'm so badly ill.  Swimming 4.25 miles in five days, on an empty stomach, and with very little sleep can only mean I'm functioning on stress hormones alone.  I will swim at least two miles next week in defiance before I'm robbed of my fitness and robbed of my swimming, and made immobile.

I'm coping with it very badly, and there's at least one or two crying sessions every day, as everything is just overwhelming to me, and all decisions have been made for me, no choice on anything so far.

The little bottle of squash has already been bought.

So pleased you beat your illness, partly for you and partly because there's hope for others, too.  However, "not all of it's bad" doesn't inspire a seamless transition, which is exactly what I'm expecting.  Things will never be the same again,  neither will my mutilated body behave as well as it does now, and I will have mental scars forever too, not to mention the endless summons to ongoing testing.

Negative, yes.  Realistic, yes.  Can I change my mindset?  No.  "Take one day at a time" is not something a planner, a controller and an organiser can do after a lifetime of being in control.

I appreciate the time you took to write.  I will be an absolute wreck by next week, and stage two of the ongoing nightmare - with no escape - only starts then.

XX

Gusbun
Posted by

Say whatever you need to get out, I will listen. Everyone expresses their pain at their situation their own way and it’s important for you to do that too. 

Gusbun xxxxxxxxx

Fairycake
Posted by

Hello Macmi1

Your comments about feeling that you’re  losing control will resonate with most of us.,Although I wasn’t as fit at diagnosis as you are, like you I didn’t feel unwell and it was hard to get my head around the fact that I had something major wrong with me. It did seem very unreal at the time of diagnosis though going for the various scans and pre-op appointments brought it home with stark reality. There were lots of times I felt out of control and it took me some time to come round to a view point that the team all had their jobs to do and my job was to let them get on with what they knew best and to concentrate on getting well. 

Yes you will find the physical things hard at first. Accepting the limitations of post op recovery isn’t easy but things do get better. Yes It will take time to regain your fitness but you will find that the team will encourage you back to activity, initially through short walks every day. Your physical activity is clearly very important to you so consider asking  your clinical nurse specialist if she can maybe refer your for specialist physiotherapy or sports therapy to help you regain your fitness after the recovery period. I know it’s not available everywhere but she may be able to point you in the right direction. Being so fit and active now is a definite plus point in terms of post op recovery. For me the physical recovery took longer because I needed chemo and radiotherapy after the surgery but 2yrs on from the end of treatment I regularly walk 2-4 miles a day. I know lots of ladies here swim regularly too. 

All the worry, anxiety, the loss of control, feeling like your body has let you down, all the emotional side can take longer to deal with and heal than the physical side. It’s not an easy time. We are all different and we all deal with things differently. I can feel your anger and your pain. I can only say that in my experience that has lessened over time and I hope it will for you too. We all here to listen and to support you. Sending you lots of good wishes for your op and recovery x

Macmi1
Posted by

Hi Gusbun,

Having had a few hours sleep since writing this last night (and I mean a few), you make me feel very humble and thankful that you have troubled to let me know its okay to rant and rave.  My guilt is that I'm not coping well, and I'm taking it out on the few people around me who know my situation.  It's on my mind every hour of every day, including the awake hours at night, and I know I should be stronger, but I just can't shake it off, even for a short while.

In the split second I wake up for the day, my brain works out if it's a "day off" day when nothing is happening, or if I'm scheduled to be doing something in connection with the C word.  So much for the glib words "carry on as normal".

The ones I lean on need to lean on others too, and you and this group are ones I lean on.

XX

Macmi1
Posted by

Hi Fairycake,

It could be me writing this, in almost everything you wrote in the first and third paragraph!!!!!  I thank you so much for writing it down and sharing your experience.

However, I must learn to trust the medical team (this is where lack of control and no choices comes in), and get it into my brain they are there to help, but I still feel they are taking down a healthy person, and I will come out the other side (if I do, of course) as damaged.

Even all the stuff we're supposed to do to help, e.g., eating well, exercise, classes, etc, just focuses back on the C word again, not AWAY from it.  There is no escape.

Your words are so, so encouraging.  I may be fairly physically fit, but I'm not mentally fit, and that, like the physical scars, will also scar me forever.

Keep writing to everyone, and keep encouraging us all.  You are so positive.

XX

hysteria53
Posted by

Hi Macmi,  I read your latest posts early this morning and have been racking my brains on and off since then for something I can say to you to help you feel better.  (arrogant of me I know as how you feel is your choice and I have little influence).  It's been a busy morning, though as most days are - I had to fill and decorate a cake for my Mum for mothers day and then pop to the shop.  A load of washing to hang out.  Then it was off for a facial and eyebrows shaping.  And I called in where I used to work to see some old friends and to make a little adaptation to the database I made for them a while ago.  When I got home I decided to rake the moss and weeds out of the front lawn - having done the back yesterday.  Then I got the lawnmower out and finally threw some grass seed over some bare patches.  I've just come in for a cup of coffee.  You see, life really does go on after cancer.  It's an inconvenient and unwelcome interruption but for most of us that's all it is.  

But it's not so very long ago that I felt exactly as you do.  I was hospital phobic and almost didn't go to see the gynaecologist when was referred (missed the first appointment and only went to the second when coaxed by the gynae secretary)..  Then, I was indignant and upset when I received the unwelcome diagnosis and the news that I was to have a hysterectomy.  I mean, how could they be so blase about it.  And how could this happen to me, we had never had this disease in the family.  Life was never going to be the same again.  Would I even survive?  I was lucky to find this site and the ladies here who helped me to keep it together for a few weeks until the dreaded day arrived.  

All that is almost a year ago now and I feel very different about it all.  I've realised that I wasn't desperately unlucky to have cancer, apparently half the population will get it at some time or another.  But I was lucky that the cancer I got is one of the more curable ones with a high survival rate, lucky that I had a fantastic team to care for me, and lucky that I live in a country where all the care is available and free.  I just feel very very grateful now.  And I feel just as fit and well as I was before the op.

I don't know if this helps you to put it all in context or not.  But I'm waiting for you to come on here after your op and tell us how great you feel and how it wasn't anything like as bad as you expected, etc etc.  You won't be able to get back to your swimming and running regime immediately but you will get back to it, and probably quicker than you expect.  

Steph x

Macmi1
Posted by

Hi Steph,

Bless your great big average normal sensible logical calm (healed) heart.

Your words - and your thoughts into those words - are inspirational. I wish I was where you are now (sort of because of what lies ahead for me first).

Being one one out of two, I've never questioned because why shouldn't it be me?  Falling from so fit and healthy to so dangerously I'll, in one move, with nothing in between is one of the many things I can't grasp.

And you took time out of your busy day to think about me, and a lovely long reply, too.  Big hug.

its now almost at the point where I need medication to calm me down with my first ever op a week away. I cry, I drink, I sleep a bit, and then I do it all over again.  I'm not ill, I've just swum another mile today, on target for 4.25 miles thIs week and a determination for another two miles next week. I'm not ill. Then I remember I am, so I've been told, so I sit and watch daytime TV imagining this is all I'll be able to do afterwards.

The internet is my friend and my enemy.  As no one is really telling me whast going on, I have to find out for myself, so I can have my expectations met.  It seems the op is just the start of phase 2, being will the op be successful?  Will I need radiotherapy?  Which sort?  How long for? Will that work?  Will I feel I'll with radiotherapy?  Will I ever feel healthy again? When's the next check? What tests again?  Will it return?  (No, take one day at a time doesn't work...)

No one can answer that now and I fear my journey only starts at the end of next week.

I feel this is now a lifelong change, even if I'm cured this time around and I will be in its shadow for ever, and I'm probably not alone in thinking that.

Perhaps one of the reasons you were cured is because you haven't let it consume your whole being, which is where I'm already going wrong.  Good on you, girl!

No you weren't arrogant, exactly the opposite, caring, thoughtful and considerate.

i can't see me coming back in a few weeks to say it was all nothing to worry about BUT others, yourself included, have done their best to help me and Id like to give back in time, too.

i just can't see it at the moment.  Now I need to receive, giving back is for some future point when the trauma (which is what I have according to my new NHS reiki practitioner ) has subsided.

Much love and thanks to all out there who are doing their very best to overturn my negative frightened attitude.

xx

Angelfish
Posted by

Hi Macmi1 we've all been there and it certainly is an emotional roller coaster. I saw my GP just before Christmas 2017, had TVI scan and hystoscopy on 05 January, diagnosed on 10 January 2018 when I saw  my Gynaeoncologist who explained what he was going to do, why he was going to do it and then promptly arranged the date for my op which was on 5 Feb 2018 - almost too quick to get my head around what was happening. However I was lucky and had a Grade 1A, Stage 1A cancer which the op dealt with. My sister in law had similar sympthoms and had her op just after Christmas last year but was diagnosed with Grade 3A cancer and is currently undergoing chemo and radiotherapy hence why I said I was lucky.

I wasn't as fit as you but had a busy full-time job which  kept me on my toes so the thought of doing nothing for a few weeks and not knowing what the outcome would be was daunting (there's only so much Jeremy Kyle one can take!) however, like many here, I made it. I used to go for a walk everyday gradually going farther and farther - although sometimes I used to forget that I had to walk back again!! Hope all goes well with the op and just go with the flow - take one day at a time and make the most of the enforced rest.

“Life isn’t about waiting for the storm to pass but learning to dance in the rain”