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The waiting...seriously..

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LaurieBeth
The waiting...seriously..

I know I sound like a broken record on here, but the waiting for tsurgery and the possibility that my surgery  will be delayed due to it being considered "elective" is absolutely exhauating me. Thirty-three days until surgery, and pribably twenty-five before I have an idea of whether that date stays in place or not. I keep vacillating between obsessively following the Covid reaponse in my state (Georgia) and avoiding the news altogether. I am exercising like mad, trying to get my body ready to fight. I am trying to be calm. But I have been quarantined with  my children now since March 14 with very little outside interaction or daily distraction. The weather is gorgeous and my children are happy and healthy. I keep trying to live in the moment. It is the only one any of us are guaranteed. But my mind keeps going to the darkest places. I keep getting gripped with the idea that I know I am going to die.then five minutes later I feel like I am going to live. And I run through everything I know obsessively and then everything I don't know (more). It is hard to imagine being sane by the time I make it to surgery, especially since (thankfully) our shelter in placw  guidelines have been extended until the end of the month. NOTHING feels normal. Literally EVERYTHING in life feels totally up in the air and I can't see a future at all. My doctor started me on a light anti-anxiety pill, but that almost seems hilarious to me right now. I have a lot of friends willing to listen and my sweet children are being totally amazing in the quarantine life.  But, ladies, this is hard.

As I have said on here more than once, I am tryong to throw myself into focusing on nutrition, sleep (ha! i am typing this at 2am), and exercise. I am also trying to learn some meditation techniques. I have years of waits ahead and I can't spend rhe rest of my life this keyed up. I will die of stress i stead of cc. I am trying to channel my energy into a love for my body and self that helps it geqr up to heal and to fight.

But this damn waiting can go atraight to hell...

 

 

 

LBA 

11/18Abnormal Pap CINIII

12/18Colpo confirmsCINIII-horrible experience with cruel doctor

12/18Cold Knife cone biopsy confirms CiNIII, clear margins-doctor says we should just take it all out

1/19 second opinion-close monitoring appropriate

5/19, 8/19 paps and colpos CIN I

2/20 Pap reveals CIN III

3/17/20 Lietz under GA

3/20/20 Cervical Cancer, no clear margins- doctor calls my situation rare and shocking as my cone had clear margins

  1. 4/1/20-scan shows no evidence of spread Radical Hysterectomy, Lymph node dissection, and ovarian transposition May 12-pathhology staged cancer at 1a1. 

 

rufus

Hi LaurieBeth

I think our timescales are similar and so I am waiting with you. I think some of the down times are inevitable because this is a scary diagnosis. I am trying not to hide from them and allowing myself to be a bit scared sometimes too.   
We are also very fortunate that we are being offered surgery that is most likely to be a cure. So although we are facing lots more waits for results, we are looking at achieving our 'new normal' by the end of the year.  
You are doing absolutely the right thing in getting as fit as you can be in preparation for the surgery. I haven't started on this yet, and working from home is not great for me (I'm about 12000 steps a day down each weekday).  I do plan to get going on this as my cancer nurse agreed that this is the best preparation for what lies ahead. 
We will have good moments and bad moments, but we will get there one step at a time. Be kind to yourself and look to the positives when you can.  
much love

Xx

Lletz under GA on 19/3/20, mri on 21/3, Results cc: stage 1b no sign of lymph involvement. 18/4/20 Radical hysterectomy with lymph node removal 6/5/20 Histology shows microscopic Involvement 2 nodes. Moved to stage 3. Chemo rads planned. 

LaurieBeth

Today the hospital canceled my May 3 preop due to COVID concerns. I completely freaked out and got in touch with my oncologist who assured me the surgery was still on, that they just do not want me to take a risk right now going into the hospital needlessly. Sure enough, thr hospital called later and made me a telephone appointment for the end of April. She said I will possibly still go to the preop but they are not sure if they will be seeing patients that week or not (My state is not going to peak from COVID until May 3). i will also have to have a COVID test 72 hours before surgery. BUT the good news is, at 24 days out, the surgery is still on. She said she thinks it will happen, but that the situation is "dynamic."  They love that word. It still fwlt like good news at a good time; I had been a little down from all the waiting and from feeling certain it is spreading.

So now my COVID fears are amped up. My kids have still been playing with friends outside but now 

I am getting nervous about that. Going to have to lock down more for the next few weeks, for sure. Ordered a grocery delivery  today because I will not go out into public again til this has passed.

I contine to work out daily-walking twice a day, riding bikes with the kids, light weights, etc. i am

developing quite the nice body right now for quarantine. Ha. Too bad I am single and trapped in a house with my kids, right? But at least I can enjoy it before the surgery blows that all up for awhile.

But I do feel positive. I have already waited all this time. The weather is beautiful. And I feel great. So, surely I can wait 24 more days, especially with some action steps between now and then.

 

LBA 

11/18Abnormal Pap CINIII

12/18Colpo confirmsCINIII-horrible experience with cruel doctor

12/18Cold Knife cone biopsy confirms CiNIII, clear margins-doctor says we should just take it all out

1/19 second opinion-close monitoring appropriate

5/19, 8/19 paps and colpos CIN I

2/20 Pap reveals CIN III

3/17/20 Lietz under GA

3/20/20 Cervical Cancer, no clear margins- doctor calls my situation rare and shocking as my cone had clear margins

  1. 4/1/20-scan shows no evidence of spread Radical Hysterectomy, Lymph node dissection, and ovarian transposition May 12-pathhology staged cancer at 1a1. 

 

Jeebers

Hi LaurieBeth

I think everyone will agree that the waiting is undoubtedly the worst part but I can assure you that it will feel like a weight has been lifted from you after the surgery. I remember people saying to me that the waiting was the hardest bit and once treatment started it wasn't as bad as our mind had conjured up. I definitely believe this is true, I am 3 weeks post op now and recovering much better than I had imagined, albeit I'm sore, it is nothing unbearable. Try enjoy your exercise, cooking and goofing about now. I also found reading a great escape from it all during the waiting period.

I hope you get your operation soon and you will then be over the worst of it and on the road to recovery.

5/2/20 sent to a&e with abnormal bleeding, mass found on cervix

12/2/20 colposcopy and biopsy taken

26/2/20 diagnosed with cc - Stage 1b2

03/03/20 colposcopy with lletz, hysteroscopy and cystoscopy performed under GA

10/03/20 - admitted to hospital with abnormal bleeding, MRI, CT and PET scans done. PET showed abnormalities in lymph nodes, laparoscopic surgery to take biopsy of lymph nodes 

31/03/2020 - radical hysterectomy with lymph node and ovary removal

20/05/20- started radiotherapy 

LaurieBeth

Thanks. I think the COVID nightmare and drama has made it so much worse. But I am three weeks away from the surgery (fingers crossed) and the weather is beautiful. One day at a time!

LBA 

11/18Abnormal Pap CINIII

12/18Colpo confirmsCINIII-horrible experience with cruel doctor

12/18Cold Knife cone biopsy confirms CiNIII, clear margins-doctor says we should just take it all out

1/19 second opinion-close monitoring appropriate

5/19, 8/19 paps and colpos CIN I

2/20 Pap reveals CIN III

3/17/20 Lietz under GA

3/20/20 Cervical Cancer, no clear margins- doctor calls my situation rare and shocking as my cone had clear margins

  1. 4/1/20-scan shows no evidence of spread Radical Hysterectomy, Lymph node dissection, and ovarian transposition May 12-pathhology staged cancer at 1a1. 

 

LaurieBeth

Two weeks til surgery and I have started my various pre-op appointments. Because of COVID, of course, I will be alone in the hospital for my surgery. My sister will drop me off at the curb and pick me up after discharge a few days later. I was mentaly and emotionally prepared for that since I have had to go alone each step of the way so far. Next week I will have to do a COVID test and labs--all drive through at the hospital. I will literally stick my head out of the car and get the swab up the nose and then hang my arm out for them to take blood. They told me to wear a mask and to NOT get out of the car. Strange times. Now that it looks like I am definitely on for surgery, I am getting anxiety about it. Worried they will open me up and see massive spread, worried about the pain, worried about the physical and hormonal side effects, and quite honestly deeply worried about my mental health. All of this waiting, all of this fear, all lf this alone time being single and quarantined with my kiddos--I have had to just be strong all the time even whem terribly scared and lonely. I am afraid of having a total mental breakdown once I am alone at the hospital.  But at least things are moving along and in two weeks, surgery will be behind me.

LBA 

11/18Abnormal Pap CINIII

12/18Colpo confirmsCINIII-horrible experience with cruel doctor

12/18Cold Knife cone biopsy confirms CiNIII, clear margins-doctor says we should just take it all out

1/19 second opinion-close monitoring appropriate

5/19, 8/19 paps and colpos CIN I

2/20 Pap reveals CIN III

3/17/20 Lietz under GA

3/20/20 Cervical Cancer, no clear margins- doctor calls my situation rare and shocking as my cone had clear margins

  1. 4/1/20-scan shows no evidence of spread Radical Hysterectomy, Lymph node dissection, and ovarian transposition May 12-pathhology staged cancer at 1a1. 

 

rufus

Hi LaurieBeth,

Hang in there.  You are getting much closer to being able to put this behind you. The medics know what they are doing and you will be fine. The operation is doable and there is good pain relief available.  
you have been waiting ages so I understand how much overthinking you will have been doing. It's the last leg now!  
Big hugs

Xx

Lletz under GA on 19/3/20, mri on 21/3, Results cc: stage 1b no sign of lymph involvement. 18/4/20 Radical hysterectomy with lymph node removal 6/5/20 Histology shows microscopic Involvement 2 nodes. Moved to stage 3. Chemo rads planned. 

FeelingTheFear

Hi Lauriebeth 

Thanks for sharing your journey with us and I really feel your frustration with the nightmare of COVID! it's so positive to read that you've been able to focus on nutrition and exercise to prepare yourself. I've not been doing so well with that, but like you, have started trying meditation to help me keep my head together.

I'm sorry you've had to be strong for your family even when you are feeling scared. I am scared too and trying to put a brave face on it. I am glad we have this space to be honest with other ladies who understand what we are going through. 

I'm sure you wont have much longer to wait now and as Rufus says you can soon get on with your "new normal"!

All the best x

Feb 2020: smear = high grade dyskariosis

March 2020: biopsy = CIN3

April 2020: lletz = cervical cancer stage 1b1

May 2020: radical hysterectomy and lymphadenectomy. NED!

September 2020: first follow up

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Treatments for cervical cancer