(0)
0 Items £0.00

Feel like Dorothy in the Wizard of Oz!

10 posts / 0 new
Last post
Rosehip
Feel like Dorothy in the Wizard of Oz!

So there I was, bimbling along in my normal life and within a few days, I've been picked up the CC tornado and dropped into a completely new world and a totally uncertain future. As Dorothy says, "We're not in Kansas any more, Toto"....

This site has been a godsend. I didn't want survival statistics or probabilities, I just needed to get some insight into where my personal 'yellow brick road' might take me. Thanks to everyone who has posted their stories, you've given me that.

As a 48 year old with CGIN who is being seriously fast tracked by the system, I now have a pretty good idea of what might come next and that has given me some time to process my thoughts before my next appointment. It all happened so fast I was totally unprepared last time and that's not good for a rational control freak like me.

I obviously don't want to second guess my biopsy results, but the specialist made a point of telling me that even if I had clear margins, the CGIN could still be doing its stuff further up into my uterus so I'm expecting that we'll be talking about a hysterectomy before too long.

Feel sore and crampy from the LLETZ and anxious about what might come next, but overall I feel quite calm. After all, there's nothing I can do now except wait (and eat cake). Come to think of it, maybe I'm not in Oz yet and this is just the eye of the storm....

04/10/12 Routine smear, CGIN, 10/10/12 Colposcopy, LLETZ, 'top hat' 24/10/12 Adenocarcinoma 1B1 05/11/12 MRI, 16/11/12 - EUA, restaged 1B2 11/12/12 57 lymph nodes removed, nodes clear 10/01/13 Laparoscopic rad hysterectomy, 30/1/13 'de-staged' to 1B1, 3 monthly check ups ok. 5/7/13 lymphoedema in left leg.

Toca

Rosehip it is a horrible time of uncertainty at the moment and everyone always finds the waiting one of the worst parts. The site is great for any questions or concerns you might have as there will always be someone who has been in a similar position. I liked the humour in your post, I think you will get through this just fine x

Smear - April '11 Biopsy - June '11 Diagnosed CC stage 1B age 28 LLETZ - July 11 MRI - Aug 11 Surgery - Lymph node removal and Second LLETZ - Sept '11 No spread found, no lymph node involvement Clear smear - Feb 2012

Rosehip

Thanks Toca - humour is my coping mechanism, I guess. Don't know any other way to be. :D

04/10/12 Routine smear, CGIN, 10/10/12 Colposcopy, LLETZ, 'top hat' 24/10/12 Adenocarcinoma 1B1 05/11/12 MRI, 16/11/12 - EUA, restaged 1B2 11/12/12 57 lymph nodes removed, nodes clear 10/01/13 Laparoscopic rad hysterectomy, 30/1/13 'de-staged' to 1B1, 3 monthly check ups ok. 5/7/13 lymphoedema in left leg.

andreac
andreac's picture

Hi Rosehip,

I also like the humour - made me smile! I was diagnosed on thursday so I also feel much like you - its completely bonkers to be in this situation.

Wishing you all the best. I still have some light bleeding from my lletz on 24/9 but cramping only lasted a couple of days so hope you feel better soon.

take car and let us know how you get on
xx

Smear Mar 2012 - mild changes Smear Sep 2012 - polyp & abnormal result Colposcopy,hysteroscopy, lletz Sep 2012 11 Oct 2012 - diagnosed adenosquamous carcinoma 11 Oct 2012 - staged at 2B - 5 wks chemo/rad, 3 brachy - ended 27/12...ALL CLEAR 9/4/13!!!!!

Rosehip

Yep, bonkers is the word, Andrea. I see that you've just had your diagnosis, so sorry it came out that way. I'm sure it was a bit of a shock even with all of the mental prep we try to do.

I guess we're all hoping they'll say "Ooops, so sorry, got your results muddled up with someone else's. Turns out you're fine after all!" Who knew that on some level we'd actually end up hoping for an inefficient NHS? No, this time they have to go and get it right... bloomin typical!

Good luck with the MRI and do keep us posted on how you get on. Supportive friends and family are all vey well, but they can't really understand how it feels to be at the business end of this craziness. We're in this together!

04/10/12 Routine smear, CGIN, 10/10/12 Colposcopy, LLETZ, 'top hat' 24/10/12 Adenocarcinoma 1B1 05/11/12 MRI, 16/11/12 - EUA, restaged 1B2 11/12/12 57 lymph nodes removed, nodes clear 10/01/13 Laparoscopic rad hysterectomy, 30/1/13 'de-staged' to 1B1, 3 monthly check ups ok. 5/7/13 lymphoedema in left leg.

LouiseUK

Hi Rosehip
welcome to Jo's :) I wanted to let you know that I was also 48 on diagnosis, and now having just turned 51, I am fitter and healthier than at the time of diagnosis! I won't lie - there have been tough times along the way and coming to terms with a cancer diagnosis is very tough. However, once I got to about 12 months post op, I felt the need to try and take back some control in my life and ever since I have channelled all my energy into being as fit and well as I possibly can. This has been like therapy for me, but of course it takes time...

Just wanted to let you know the surgery is doable and there's plenty of life to be had back in Kansas!
Wishing you all the best with your treatment and recovery.
Lots of love
Louise xx

Laser treatment 95/96 for mild to moderate CIN. All clear smears until March 2010 then diagnosed CIN3. Biopsy showed cc 1b2 grade 3, RHND on 9/6/10, 16 lymph nodes removed. Given the all clear on 22/6/10 - no further treatment!! :D

Rosehip

Thanks Louise,

I know what you mean about needing to keep some control. I recently lost a lot of weight which was blooming hard work and now I'm really trying not to slide backwards into comfort eating through stress. Cutting yourself some slack is one thing, but it's too easy to let everything go when things like this happen, I think.

Ironically, my hobby is belly dancing* so this afternoon I'm off to my first rehearsal since the LLETZ (will take it gently). Have a show in 2 weeks' time, just after my diagnosis appointment. I am tempted to drop out, but then I think it might be the last time I perform for a while - might as well go out with a bang! A big sparkly, jingly, in your face, bang! :lol:

* Ironic because in some langauges, it's called the dance of the abdomen, or even dance of the womb!

04/10/12 Routine smear, CGIN, 10/10/12 Colposcopy, LLETZ, 'top hat' 24/10/12 Adenocarcinoma 1B1 05/11/12 MRI, 16/11/12 - EUA, restaged 1B2 11/12/12 57 lymph nodes removed, nodes clear 10/01/13 Laparoscopic rad hysterectomy, 30/1/13 'de-staged' to 1B1, 3 monthly check ups ok. 5/7/13 lymphoedema in left leg.

Lisagp

Hi Dorothy/Rosehip!

Sorry you've been thrown onto the yellow brick road, but rest assured there's plenty of friends on here who will help you make the journey doable.

I'll be thinking of you when you get your results, and hoping for the best outcome for you.

Everyone agrees waiting is the worst bit, once you know what you're facing, you can grab the tin man & cowardly lion and face the wizard himself.

Keep your chin up and in no time you'll be clicking those heels and going home.

Best of luck, Lisa x x x

Abnormal smear 10.08.12 | Colposcopy 16.08.12 - took biopsy of cancerous looking polyp | Diagnosed Adenocarcinoma 22.08.12 1a2 | Chest X-ray 23.08.12 | MRI 30.08.12 | Cone biopsy & lymph node removal 03.10.12 |
All clear 23.10.12
Check-up #1 14.03.13
MRI Result #1 11.06.13 - ALL CLEAR

KAR47

Hi Rosehip aka Dorothy
Thank goodness for humour. :D I am in a very similar position to you and management / next step meeting scheduled 22.10.12.
The waiting is doing my head in and my constant googling is doing hubbies head in! I am quite calm really but feel i need to know the plan and options(if there are any)
Just wanted to say thankyou for making me laugh x I feel more like the lion at the minute but will deal with it when i know clearly what i am facing or i may bolt to Kansas!
Best of Luck x
Kath

5.9.12 Routine smear 24.9.12 Colposcopy clinic - referred lletz under GA 3.10.12  Hysterectomy booked 20.11.12 Hysterectomy cancelled MDT meeting 26.11.12 for second opinion on cin 3 diagnosis.  restaged 1a1 referred to specialist centre. 2nd lletz booked 3.12.12 restaged again 1b1 20.12.12 radical hysterectomy. 10.1.13 final stage 1b2 lymph nodes clear but LVSI present. No further treatment. 3 monthly checks.

Rosehip

Thanks everyone - when we get the all clear, let's each sing a round of "Ding Dong the Witch is Dead!"
:lol:

04/10/12 Routine smear, CGIN, 10/10/12 Colposcopy, LLETZ, 'top hat' 24/10/12 Adenocarcinoma 1B1 05/11/12 MRI, 16/11/12 - EUA, restaged 1B2 11/12/12 57 lymph nodes removed, nodes clear 10/01/13 Laparoscopic rad hysterectomy, 30/1/13 'de-staged' to 1B1, 3 monthly check ups ok. 5/7/13 lymphoedema in left leg.