Surgery took a different turn

Hi Tivoli I am sorry to hear that. Nothing worse than not having faith in your treating team. It would seem that your surgery was ill advised - lucky you didn't get lymphodaemia. My abdomen looks like a hot cross bun what with the caesar scars and the laparotomy scar. It wasn't much chop to begin with so not a giant step backwards. Of all the treatments the surgery was definitely the most distressing and the most debilitating so Leeanne your are fortunate they didn't proceed.

Jayne xx

Hi Jayne :-)

Trouble was I didn't have a team. I was diagnosed at the gynaecology/obstetrics outpatients clinic and admitted to hospital on the spot. The head of the ob/gyn dept was a gynaecological surgeon and what he said went. I believe he is now retired. I have been doing some very deep thinking today and am taking it all in my stride rather better than I was earlier in the day.

Many thanks for your concern but I agree completely, Leeanne has escaped and three cheers for that!

Be lucky ;-)
Tivoli

Hi ladies, im home! Which is lovely, im seeing my oncologist to talk chemo on friday but im having a meltdown as the nurse said the words uncurable today which automatically panicked me!! I couldnt find any words but once we got to the car i freaked out crying....saying to my boyfriend i didnt want to die and i was on borrowed time!!. I refuse to give in and still feel i can beat cancer.

Im all over the place emotionally

Leeanne xx

You're home!!  What a treat to be back in your own home and your own bed.  Ahhhhh.

Ignore the nurse -  bless her heart, she doesn't know shit, which is why she's a nurse and not an oncologist.  Perhaps she'd like to chat with all the 2b and beyond survivors on this forum who are happily living their lives. Truly, where do they find these people?

Perhaps she means that you'll always be in remission rather than technically "cured."? Maybe it has a different meaning medically.  I have a friend whose breast cancer has been in remission for the last 10 years so she is not technically cured, I suppose.  Who knows?  Maybe the nurse is just a total idiot.

Your oncologist has worked out a program of treatment for you. Unfortunately, with finances being what they are in the NHS, if he thought it was a waste of time treating you he probably wouldn't do it. So, he clearly believes this treatment has every chance of success and he's the one with the medical degree and experience, so let's ignore Nurse Cheery.

You're home. Relax, rest and get ready to kick this crap to the curb.

Take care sweetie,

love t xx

Tiv:

Bloody hell!  Are you glad you found out, or is there a part of you that wishes you didn't know? 

How's your man, by the way? Is he home with his favorite toad yet?

love t x

Isn't Teresa a joy! :-)

I love your post about nurse Cheery :-)

I'm OK with it all now thanks. Did enormous amounts of thinking yesterday. My tumour had penetrated about halfway through the endocervical wall and had spread the full length of my uterus but without penetrating it. I can only guess then that having begun the surgery through the abdomen, none of the tumour was visible to the surgeon because it was all contained within those organs, and it was only when those organs were sent to the pathology department that the size of the tumour could be assessed.

But that doesn't alter the fact that I would have been happier to have avoided surgery altogether and gone straight into chemo-rads Do Not Pass Go!

Man's machine has broken down twice causing delays in treatment so his finish date is now presumed to be 26th Aug. I'm rather enjoying having the place to myself as it goes ;-)

Lots of love everyone :-)
Be lucky
Tivoli

Hi Leanne

That's great that you are home! And you think you can still beat this because YOU CAN! Bring on the chemo and get rid of this blasted thing! I agree with Teresa regarding the nurse anyway - NURSE not Oncologist!

Do let us know how you get on on Friday. Hope you're doing ok lovely xx

 

Tivoli - I am sorry to hear of your ordeal. It is so hard putting our trust in these specialists and surgeons, because in the end of the day they are also just human and make mistakes, but the consequences of the mistakes are on us - baffling to get my head around. I am glad you are feeling bit better about it today. It is great that  you have escaped lymphedeoma, especially living in hot Greece. My oncologist told me that the hot weather can bring it on and I live in Australia so I am like bracing myself for that!

Enjoy having the place to yourself :) 

 

Lots of love to everyone!

 

Rosie xx

Rosie!!

There you are! You must be getting mighty close, so good luck.  Keep us posted.

love t xx

Bloody hell i nearly burst my stitches laughing Teresa!! 

Thankyou...this is why i love this forum and love talking to you ladies.

Feel much better.

Oncologist on friday so hopefully will feel better after speaking to him.

Thanks for all the messages ladies

Leeanne xxx

Any time!

Hope you're recovering well and being waited on hand and foot. I didn't do laundry for 8 weeks. I told my husband I wasn't allowed to bend over and we have a top-loading washing machine.  Ha! Worked like a charm!

love t xx

Tivoli are you an adeno girl too? I am adeno, staged at 1b2, no spread, but I ended up not being a candidate for the surgery because my tumor is too big. They said it was right at 5-6 cm, and he won't operate at 5 or over. So I am going the chemo/rad route. I'm actually envious of you! My hrt treatments are going to be very limited because I still have my equipment they're just fried and unuseable. (Or will be) Im going to be 32, full on menopause and very limited on what we can do for the hormones due to getting other cancer risks. Ugh!

Yup :-) I'm an adeno girl. If I understand correctly my tumour was in the 7+cm range but the surgeon didn't know that until after he had whipped it out. Your equipment may be fried but with lube and dilators you should still be able to get the fun parts working adequately ;-) My problem is that my fun bits were dramatically shortened and then fried. No amount of lube and dilators is ever going to overcome that little hurdle. Sorry about the full-on menopause at 32, no fun, but don't envy me, just be lucky :-)

I seen the oncologist who said i will be on the same chemo you lovely ladies said i would. He said the words pallative....again i had a breakdown!!! He said seen as other than recovering from this surgery im otherwise "well" he said it was up to me as to when i start the treatment....i dont know what the hell im doing and im panicking. Am i going to die? He said i need to think about when i would like to start treatment and visit him again in a few weeks.

Please help me

Leeanne

Hi leanne. ....I've been waiting for your post because you said that you would be seeing the Oncologist. Your results are the same as mine.As you know I've just finished my six sessions of the chemo cocktail.Im also palatine but it doesn't mean we are going to die.I know you are in a Scarry place right now because so was I ,Pallative means we have cancer and we carnt be cured but we can be treated .I remember going for my first session of chemo this time around and I was so frightened and full of tension and stress I was irratable with all my family who were telling me things are going to be alright, I remember thinking "I've just been told I'm going to die how the fu..... hell can they say that....I felt so angry.Anyway the nurse cam to me in the chemo room and said the normal "choose your chair lynne "and I just went and sat next to this old lady who instantly was one that never shut up,  I was with my sister and whilst I was talking to her this old lady kept butting in on our conversation asking  where had I got my cancer (I never did like talking about it because I was afraid they,d tell me too much).,she said she had cancer of the cervix and I thought oh god she's going to tell me all her story and I'm going to be a reck by the time the days over.My sister knew how I was feeling she could tell by the look on my face.Anyway I was trying not to listen to her but I heard her saying she had it a long long time ,years in fact.The lady was about 80 but very sprightly, it turns out she was told she was Pallative and that she had had treatment 4 times going on to say she was happy to have it as she was a changed women after.I never took any notice of her because I was shaking just listening to her but after my 6 sessions (and I never got to see her again..although I thought I heard her in a different cubicle).Since my results from that session and they are really pleased with me and said that the tumour had shrunk right down, which is fantastic. I  think about the old lady a lot and the fact she had had that session 4 times .It certainly given me hope.I started to get braver thinking ok so I'm Pallative which if you think about it ,it's not curable but it is treatable and someone said to me who knows that the chemo your having won't shrink it to nothing one day????No one can tell us this Leanne , you've just got to look at it a different way .I tell myself I have an illness that if it starts to show me symptons I recognise I will be on the phone and the treatment will start.I'm waffling on here lee ane because I'm trying to ask you not to be so scared,and all the time this is going on there is every possibility that a cure will come along.I believe we will get a cure for this,its just a matter of time .I hope lve  given you a little bit of positivity because that's what you need right now.We have an illness that has to be treated every  now and then.Come on girl pick yourself up and arrange that treatment asap and fight the bastard like you've done before.Thinking of you big hug.lynne xxxxxxxx 

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Hi leanne. ....I've been waiting for your post because you said that you would be seeing the Oncologist. Your results are the same as mine.As you know I've just finished my six sessions of the chemo cocktail.Im also palatine but it doesn't mean we are going to die.I know you are in a Scarry place right now because so was I ,Pallative means we have cancer and we carnt be cured but we can be treated .I remember going for my first session of chemo this time around and I was so frightened and full of tension and stress I was irratable with all my family who were telling me things are going to be alright, I remember thinking "I've just been told I'm going to die how the fu..... hell can they say that....I felt so angry.Anyway the nurse cam to me in the chemo room and said the normal "choose your chair lynne "and I just went and sat next to this old lady who instantly was one that never shut up,  I was with my sister and whilst I was talking to her this old lady kept butting in on our conversation asking  where had I got my cancer (I never did like talking about it because I was afraid they,d tell me too much).,she said she had cancer of the cervix and I thought oh god she's going to tell me all her story and I'm going to be a reck by the time the days over.My sister knew how I was feeling she could tell by the look on my face.Anyway I was trying not to listen to her but I heard her saying she had it a long long time ,years in fact.The lady was about 80 but very sprightly, it turns out she was told she was Pallative and that she had had treatment 4 times going on to say she was happy to have it as she was a changed women after.I never took any notice of her because I was shaking just listening to her but after my 6 sessions (and I never got to see her again..although I thought I heard her in a different cubicle).Since my results from that session and they are really pleased with me and said that the tumour had shrunk right down, which is fantastic. I  think about the old lady a lot and the fact she had had that session 4 times .It certainly given me hope.I started to get braver thinking ok so I'm Pallative which if you think about it ,it's not curable but it is treatable and someone said to me who knows that the chemo your having won't shrink it to nothing one day????No one can tell us this Leanne , you've just got to look at it a different way .I tell myself I have an illness that if it starts to show me symptons I recognise I will be on the phone and the treatment will start.I'm waffling on here lee ane because I'm trying to ask you not to be so scared,and all the time this is going on there is every possibility that a cure will come along.I believe we will get a cure for this,its just a matter of time .I hope lve  given you a little bit of positivity because that's what you need right now.We have an illness that has to be treated every  now and then.Come on girl pick yourself up and arrange that treatment asap and fight the bastard like you've done before.Thinking of you big hug.lynne xxxxxxxx 

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Thanks Lynne, im starting to come round now....all my friends and family apart from my sister and boyfriend i think are basically planning my funeral...im trying to stay focus on taking it day by day. Your a true inspiration and keeping me going through this time. I can handle having to live with cancer...i just need to get fit from this Operation then i will get stuck into the chemo. In the mean time im going to have a lottle holiday with my boyfriend before it all kicks off and then again once the treatment is finished. I know i can handle the chemo....no way will i roll over to cancer....never!!! Im going to put on my highest heels and boot the shit out of it.

Girl power

Leeanne xxxx

Hi leeanne

im so glad you have got your fight back and feeling more positive have a lovely break and a bit of me time let us know when you start your chemo mix and keep us informed of how things are going 

luv Michelle xx 

Hi leanne .....hope your feeling better.Just checking in and hoping that your still in that positive mood that is you? I don't know if your on that little break with your boyfriend but if you are forgive the interruption. I'm due to go to Cornwall this weekend for a short break myself and so looking forward to only me and hubby knowing I have cancer , hairs grown back enough to fool them as well .I walk around my home now without the wig but haven't gone out publicly without it.Mainly because I don't do bold head (but that's me)it doesn't mean some women dont look beautiful bold because they do but I didn't like it at all,it just reminded me what I'd got.I'd got my wig on the ready from when they said I'd lose my hair but it's still a shock when you do.There's a lot of things I wish I'd have done prior to it falling out and I was dreading the day I wash it and it all coming out I thought I'd be heartbroken. ....it gradually started coming out as early as my second session as in when I brushed it the brush would be more fuller with hair than normal.I was having night sweats also so I'd wake and everytime I'd fetch hair from my face and mouth there was strands of hair everywhere (this is one regret that because my hair was long I should have had it cut) I did but not short enough.I decided to cut it gradually every week was my plan but of course it didn't happen like that because on my 3rd session I lost it completely. Prior to this I decided to go buy a wig and I'm so glad I did.I'd been fancying short hair for a long time.....age being against me now for long hair. ...so here was my chance to try different styles and colour's. There are some gorgeous wigs out there ,nothing to how I'd imagined...like being wrapped in a teatowel a thousand times...thick and heavy.I couldn't believe how light it felt and it wasn't long before I found the one I had because when I put it on something in  the mirror made me sit up and when I went out the cubicle to show my hubby he said i looked beautiful taking 10 yrs off my age he said it really suited me and couldn't stop looking at me, so I had that one but have had a couple more since.When I went looking for one...I'd chose to want a wig but there's loads of cover ups out there and of cause there's lots of ladies that embrace the baldness so that is what I always said from being told.No one can imagine what it's like to lose your total body hair and it certainly surprised me .I never realised how much body hair we have,basically we are covered in it but I couldn't get over how soft my skin felt without it .Even when the chemo nurse said to me  after having a sneezing bout and my nose litrally dripping like one oh I said omg I hope I've not got a cold coming she said ""that will be your nose hair"" Ffs will I never stop learning about the symptoms of this f......desease. Then you learn your open to infection because that's what we ALL have nose hair for as it catches germs and such.Your whole body has hair that why everywhere feels soft and smooth.....Lovely actually.Anyway Sweetheart this was only supposed to be a quick message to see how you was....Sorry!!.Will catch up with you shortly.Big hugs xx

Hi Lynne,lovely to hear from you!! I was going to ask about wigs?.....i too have long hair and was debating cutting it off once my chemo starts and starting to wear the wig straight away rather waiting for it to fall out. Still feeling positive just concentrating on healing from surgery....ive been trying to walk as much as possible and think ive over done it the last 2 days...im knackered today. My scar is healing ok the nurse has been to change my dressings....sneezing and coughing still have me in agony though....ouch!! Going to plan a few more weekends away with my boyfriend then im aiming to start chemo end of september beginning of October......im so nervous for chemo but i know once im having it i will be fine.

Thanks for your messages they really keep me going

Lots of love and hugs

Leeanne xx

Hi Leeanne :-)

I haven't suffered hair loss myself but I understand from those who have, especially those with long hair, that a great idea is to have it cut short before the chemo begins and donate your hair to The Little Princess Trust. It makes you feel good about helping little girls going through chemo and it means you don't have the trauma of big hair falling out all over you. 

Be lucky :-)
Tivoli