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4 weeks post abdominal RH....

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Tinkerbell82
4 weeks post abdominal RH....

Hi ☺️ 

it's my first time posting on this site, I've only just discovered it and wish I'd found it before my surgery!

So, in a nutshell, I was diagnosed with stage 1b CC on 2/4/20 and had a RH on 28/4. I'm now 4 weeks post op. The op was done abdominally, so recovery up until now has been rough. Worse than I could ever have imagined tbh, and I've been struggling a lot, physically and emotionally 
Everything with the diagnosis, the op etc all happened so quickly, and with Covid, I wasn't able to take anyone with me to any appointments. I feel like I was thrown on a runaway train with no way of stopping it....and now it's come to a screeching holt, and I feel shell shocked. Is that normal to feel like that?! 
Ive pretty much stopped all pain killers now, and just sometimes need paracetamol or ibuprofen at bedtime to help get comfy. I've had a post op appointment with my surgeon who's told me they got all the cancer during the op and I don't need any further treatment

I was hoping you all might be able to help me with some questions I have, as I feel like I've already taken up too much of my lovely Macmillan nurses time....!

My first question might sound utterly ridiculous but I was wondering if it's ok to have the odd glass of wine now?! I feel like I've earned it 🙈

The next question I had again might sound bizarre to ask, but what are the "rules" about sex after this kind of surgery? It's the one thing I never remembered to ask and no one told me (that I can remember)

And lastly - sorry for so many questions - is there any hard and fast rule on going back to work? I assume I may need more than the standard 6 weeks as I'm a police officer, so a very physically demanding job. But again, no one really said, that I remember.

 

Thank you all for reading, if you got this far! 

 

Lisa x

FeelingTheFear

Hi Lisa,

Welcome to the forum it's great that you've found this site, it's been a huge emotional and practical support for me as I've come through diagnosis and treatment in recent weeks. I had 1b1 cc and an abdominal RH and lymphadenectomy 2 weeks ago. So I'm a bit behind you in terms of where I am with recovery but hopefully we can help each other out and share our experiences xXx

I had the amazing news this week that I dont need further treatment as like you, I've been so lucky and fortunate that they got all the cancer out. In the whirlwind of dealing with my diagnosis at a time when I havent been able to see friends or family, I was so overwhelmed by emotion (as you can see by my choice of username) that I felt the only way to get through was to box the feelings up and put them to one side.

When I had my all-clear, I was stunned by all the different feelings that bubbled up. I was grateful, relieved, elated but also still shocked, afraid, sad, angry, and grieving my lost fertility. I dont have any further appointment for 4 months which feels like being thrown off the rollercoaster to get on with patching my broken body and life back together again.

I've read a lot of other peoples experiences on this forum and it seems this is totally normal. One of the kind ladies here posted a link to this incredible article which is a long read, but a very worthwhile one. It made me feel so understood, that at moments, brought me to tears. A good one to work through over a few days:

https://www.google.com/url?sa=t&source=web&rct=j&url=http://www.breastfriends-aylesbury.org.uk/wp-content/uploads/2017/12/Peter-Harvey-After-the-Treatment-Finishes-then-What.pdf&ved=2ahUKEwjr7qHJoNXpAhXuUBUIHRssBRkQFjABegQIARAB&usg=AOvVaw3dCkezLxU0lUkFd4IQ7mGl

I also found this site helpful, and a shorter/quicker read, and there are more good links at the bottom of this article

https://www.maggies.org/cancer-support/managing-emotions/emotions-after-treatment/

As regards your questions, seeing as you are now 4wk post op and no longer on opioid pain relief and I presume are not on any other medication that can cause drowsiness, I cant see why you shouldnt enjoy alcohol in moderation like anybody else. And you have definitely earned it! You could always double check with your own GP as mine seem pretty quick with getting back to me on the phone nowadays as they arent seeing patients face to face.

Your question about sex is something I asked my surgeon about this week so I can tell you what he advised me - at 4wk post op, orgasm through external stimulation is ok, and at 6wk post op, all internal stimulation is ok including penetrative sex. He cautioned that with all the usual "be guided by your body and if in any discomfort then stop and try again a few days later". 

I have a physically demanding job that involves 9hr of walking/standing with some manual handling and very little time seated. I've been signed off for minimum 8wk, could be up to 12wk. When I feel ready I can have a phased return to work, building up towards full time hours over a period of 6 weeks. At the moment I am feeling quite eager to get on with my old "normal" life again so I am working on 3000 steps a day currently and look to gradually add an extra 1000 steps a week until I can comfortably manage 8000 by the time I have to go back to work. 8000 is half what I would normally walk on a days work but I feel like is the minimum I would need to be able to start my phased return as I cant do my job sitting down.

I'd be really happy to chat with you about your recovery and how you're feeling either on here or by private message. Please know you are not alone :-) 

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

Tinkerbell82

Hi ☺️

Thank you so much for taking the time to reply, and for the links. I'm going to have a look at them in a little while ☺️

You've totally summed up how I feel, about being thrown off the rollercoaster suddenly - it's been like a whirlwind which I imagine is how you feel too! 

I honestly wish I'd found this site before I went for the op, but I'm really glad I found it even now. 

How are you feeling? You're about 2 weeks 'behind' me I think....I found the 2nd week the worst, but I got an infection in the wound which really set me back. It's only just healing now. 

I haven't worked this site out yet, and whether you can do private messaging, but if you can and you'd like to, please feel free ☺️ 

xx

FeelingTheFear

 Hello again, 

You're welcome and it is a really good website and I'm sure will help you in your recovery.

I'm sorry to hear about your infection, that's so unfortunate! My wound is healing up ok, I had a lot of bruising initially but they sewed me up with internal dissolving stitches and glue so I'm just letting it do it's own thing. Cant wait to start with the bio oil which I was told is ok from week 4. Sometimes the scar feels very tight.

Physically I have felt stronger every day and now that my pain is pretty well controlled I sometimes I try and do too much and then pay the price with pain and fatigue. I dont sleep brilliantly as I need to have a wee every 3 hrs and I find it an ordeal to get out of bed and still need help to do that. 

Emotionally, the loss of fertility is something I find very hard and try not to think about too much as I can get quite distressed. My CNS has referred me for counselling but really it's hard to imagine how or if I will ever feel better about it.

I hope you'll find those links useful, but definitely something you have to be "in the mood" to read laughing 

Have a nice day, its lovely and sunny here, I will head out for a short stroll and enjoy some fresh air 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

LaurieBeth

Hello, Lisa!  Feeling the Fear and I are surgery buddies from two weeks ago, so like she is, I am just a little behind you in recovery.  And I was also a stage 1B1 when everything was said and done, no further treatment needed.  I want to echo what you both said about feeling bewildered after being booted off the roller coaster.  I also had to do this whole journey alone because of COVID and had to wait almost two months for surgery and it was such an intense and insane time.  Being diagnosed. ALONE.  Going to a damn cancer scan.  ALONE.  Being dropped off at the curb of a hospital. Surreal.  All of it. It would seriously feel like a dream if it was not for this pesky abdominal situation that interferes with life and comfortable sleep. I am so relieved not to need more treatment, and sometimes I surge with joy.  I was walking yesterday and the sky was a perfect blue and birds were singing, and if I could have fallen to my knees without being trapped on the ground like an upside down turtle, I would have.  I would have just thanked the universe for giving me more time. But then a lot of other times, I feel numb or even grumpy.  I keep reassuring myself that everyon has been struggling to stay mentally healthy in the madness of COVID.  Then, we had cancer to deal with in addition.  Of course we feel strange.  I think it will take some months for us to sort it out in our heads, especially since this is really quite a recovery process.  I am doing really well and have not had any setbacks and I am still amazed at how major this operation was.

 

Feeling the Fear totally handled your sex questions and work questions, but for humor's sake, please enjoy that I asked my nurse when it would be safe for me to masturbate. I am a single gal who is sheltering, so if anyone is going to figure out if everything still works, it is going to have to be me.  She turned bright red and stuttered that it should be safe at four weeks.  I wonder if I am the only person ever to ask that particular question.  I optimistically asked about sex, too, (maybe  a hot Amazon delivery man or something...) and she said six weeks.  I have a friend who suffered a vaginal cuff tear having sex five weeks after a laparoscopic vaginal hysterectomy.  It is more common with those and so nothing to worry about but after hearing her horrifying story, I think I would not even consider giving that a go any earlier than six weeks. 

 

I am forutnate to be a teacher, and school is out for the summer and will not start up again for us until the beginning of August (depending on what happens with COVID), so I will have had 10 weeks between my surgery and the start of school.  I anticipate fatigue being the main issue we all face.  I don't know about you ladies, but I wear out easily.  Just going to the oncologist and then the dentist the other day (and I did not drive to either) about took me down.  I think it will take a while for our bodies to find their former energy levels.

 

I said this on another post today, but I am really trying to learn patience finally at age 43.  I know that if my body can properly heal, then I can get on with my life, hopefully cancer free forever.  But if I don't rest and heal, I can cause complications that last a long time.  So, I am trying to value stillness and the birds and long conversations with friends.  And of course my shuffling walks in the sunshine.

 

Glad you found us Lisa!  Keep us posted on your recovery and we can all support each other through these next weeks of healing.

LBA 

11/18Abnormal Pap CINIII

12/18Colpo confirmsCINIII

12/18Cold Knife cone biopsy confirms CiNIII, clear margins-doctor suggest hysterectomy

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 Diagnosed with invasice cervical cancer, no clear margins

5/12/20Radical Hysterectomy, Lymph node dissection, ovarian transposition-Staged 1B1-no further treatment needed

Follow up 9/28/20

 

 

Tinkerbell82

Hi Laurie Beth!

 

Thank you so much for taking the time to reply, and for making me howl with laughter at your masturbation question! 😂😂 I laughed so much it hurt! 😂 

 

I imagine being a teacher you are always up on your feet and busy, so please take it easy if you can when you go back to work! I'm a Police Officer, so I need to be fit enough to chase someone or deal with violent situations, so I think I will listen to my surgeon and take the 12 weeks he suggested. 

I think the feeling of doing all this alone (the hospital appointments etc) is the biggest thing I am now struggling with. I guess we picked the worst time to get this horrible disease! It was awful sitting there alone when they told me, walking in by myself for the operation. I'm lucky I had my boyfriend at home waiting for me, he always dropped me off and picked me up - he's been amazing but I know it's been hard for him too as he felt totally useless. 

Regarding the issue of sex/masturbation.....it's tricky, and I'm sorry for this being a bit too much info, but I'm scared about doing it, even at 6 weeks, as my boyfriend is rather.....ahem.....rather "blessed" in the anatomy department 😂 and I'm worried about it hurting or doing some damage. He's so understanding and says we don't need to rush in to doing anything, that we can be careful and gentle, but it's still a worry! Maybe I'll ring my nurse tomorrow and get her opinion on it. 

I hope you are feeling ok after your surgery - I'm less tired now than I was and the pain is getting much easier now at 4 weeks post op. The only problem I have is where I got the infection is really sore, but it's healing now so I'll get there slowly 😊 

 

Hope you have a good weekend ☺️ 

Feel free to pm me if you'd like to chat any more 

Lisa x

FeelingTheFear

Hey lauriebeth, 

Your comment about getting trapped on the ground like an upside down turtle had me howling with laughter and gripping my incision!! That's exactly what it feels like! Hahaha x

I too have alternated between those surges of joy and then profound sadness. It's at the joyful times that I am trying to now think about the future and how to use the extra chance I've been given. There are darker times when I feel really down about fertility and I cant imagine getting over it. But those moments of gratitude and joy give me hope that I will still find meaning even without a family of my own. 

Good on you for asking about masturbation. I read a post of yours on another thread where you mentioned about orgasm being potentially forever changed and this is lurking on the back of my mind too. My husband was next to me when I asked the surgeon over the phone when I can start up external stimulation again and my poor husband put his head in his hands and nearly died of embarrassment - I realised how far I have come in not being embarrassed anymore. After all, this surgeon has literally seen me inside out so there is no use for modesty/dignity now. It's my body and I want it back and I want to know what theyve left me with! 

Vaginal cuff tear sounds horrendous. I was really hoping in a way to get an internal exam sooner than in 4months time so I would have confidence that it has healed normally and it's ok to use it again. But I'll just have to see how we get on and hope for the best.

Great that you'll have 10 weeks to recover, I think that's a good timeframe. The idea of going back in week 6 for me just feels laughable right now. I feel very vulnerable when outside the home in case, as you say, I wind up like an upside down turtle. I'm sure the confidence will slowly return. This journey has been everything to do with patience, and looking for the positives, it will be a lesson I really needed to learn. 

Hope you both have a relaxing sunday!

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

LaurieBeth

So, today I hit the three week mark on recovery, and as I was walking I was thinking bout how the past week has felt like a plateau.I don't feel horrible, but I feel like I am recovering in tiny, almost impeceptible increments now. And as much as I feel ungrateful to say it, I have felt pretty grumpy and tired of my hard bloated stomach and my pain,despite it being very, very manageable.  I have driven short distances on both of the past two days, and both times it was uncomfortable and anxiety inducing.  I keep napping midday, which is not like me, and sleeping at night remains uncomfortable (though WAY better than it was that first week after surgery, for sure). A friend of mine came by today.  She also had early stage cervical cancer 13 years a ago and is totally healthy now.  I asked her how long it would hurt and she said...awhile.  She said she felt pretty normal by eight weeks.  I know that it is a small price to pay for getting to live, but I am a bit tired of working puzzles and coloring and reading.  My kids are stir crazy and it is already hot outside, but between COVID and the emotionally charged protests happening all over my area and state and my weakened condition, we are pretty much trapped at the house, which is fine.  I just hope this week brings some marked improvement so that I don't lose my mind.

LBA 

11/18Abnormal Pap CINIII

12/18Colpo confirmsCINIII

12/18Cold Knife cone biopsy confirms CiNIII, clear margins-doctor suggest hysterectomy

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 Diagnosed with invasice cervical cancer, no clear margins

5/12/20Radical Hysterectomy, Lymph node dissection, ovarian transposition-Staged 1B1-no further treatment needed

Follow up 9/28/20

 

 

emmatheredhead

Hello all, 

Today I'm 9 weeks post RH and so much of what you've all said rings true. I've had an uncomplicated recovery, catheter came out fine and other than the healing process (and pains) nothing else has come up. I'd say that I've been surprised by how much can change in a short space of time. I remember feeling frustrated at not being able to walk very far and how I'd feel exhausted at doing the smallest of activities. But our bodies have had this huge trauma and it takes time to heal and recover. I had my mum stay with me and she reminded me that even though I could see things healing on the surface I couldn't see what the situation was inside. It's not worth over doing it!

I go for longish walks now about once a week (1.5-2hours) but an uphill can make me feel tight lower down on my wound. I'd say you just need to listen to your own body, if something feels a bit off then just don't do it for a bit. It's trial and error! I remember being delighted when I could just pick up my cat!

I think the sex and masturbation questions are so important. I'm single and actually quite scared of having sex with someone new in future. I've explored what it feels like inside now, post surgery. At first it just left me crying; I'm narrower, shallower and tighter than before and have no idea how anything is going to get in there! But I have masturbated since and experienced good sensation so maybe explore yourself first (6 weeks on at least!) before doing anything with a partner? It's your body, see what works for you. It pisses me off that we have to deal with this potentially impacting our sex lives too to be honest.

I went back to work 2 weeks ago - I don't have a physically demanding job but have been really cautious in going back in steps. Partly its been because I feel like my whole world has changed and its hard to reconcile that with going back into the every day, normal activity of work. I went through a phase of feeling outraged that people were carrying on their lives as normal whilst mine was so different. I guess the emotional side of this journey is also one of the things that takes a while to process. As I line managed 6 people as well I needed to get to a place where I was well enough to be able to respond to their concerns about me but also convey that they could trust that I'd decided I was ready to come back.

That's a huge splurge of my thoughts right there! Remember to be kind yourselves, sending lots of healing love xxx

 

Diagnosed 12th Feb 2020 with adenocarcinoma, suspected 1b

25th March confirmed stage 1b1 following CT and MRI

31st March radical hsterectomy, pelvic lymph nodes removed, ovarian transposition

8th April advised histology clear, no further treatment required

Follow up due on 8th July

FeelingTheFear

Hi ladies,

I was so excited to see that you had posted on this thread, as really, I had been feeling pretty [email protected]#py the last couple of days and a bit lonely, and it always lifts my spirits to see an update on this thread! Thank you x

My progress had really slowed down, and even taken a step back. Today is day 19 and after 2 or 3 tough days I now feel I'm back where I was on day 15, before I had my setback. I was able to manage a 30min walk outdoors again today and I cooked a proper dinner myself from scratch, although I had to sit at the table to chop the veg. It was tasty :-) I've fully recovered my appetite now 

I tried to come off the weak opioids this weekend, having quit the morphine the previous weekend. This left me feeling really sore and not wanting to walk around as much, also worse sleep as I keep waking with crampy spasm type feelings in my tummy. Spoke to GP today who told me to stay on the cocodamol and stop worrying about needing to use them for now.

Lauriebeth, as you can see I'm totally sharing your feelings of plateau after the relatively big steps I was making every day in the first 2 weeks. If I can be brutally honest and have a bit of a whine, whilst acknowledging that my situation could be so much worse, I also cant help feeling fed up of the pain, the not being able to sleep, shuffling around like a duck. The swelling on my pubis went away, and now it's back again. My left ankle swells up and down throughout the day. My belly is still round and bloated, I can only wear baggy clothes. I feel depressed listening to my friends talking about their kids, knowing that'll never be me. 

Emmatheredhead, thanks for sharing what it might be like in a few weeks further down the line. I was so sad to read how you felt when you first explored your new vagina. I worry about this a lot. It was positive though to read that you still have a good sensation. That's the most important thing, I think. So long as it still feels good then the other limitations I guess we will find ways of working around ?

Very moany today, sorry ladies. Today was the best day I've had since friday so hopefully things will get better as the week goes on. Off the rollercoaster for treatment for now - but the ups and downs continue! 

All the best xXx

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

Amie Hewitt

Hi,

I'm also now 4 weeks post radical hysterectomy and lymph nodes removal. Routine smear on 10th March, results 20th March to say I had high grade severe dyskarosis and positive hpv. Colposcopy and 2 lettz extractions performed on March 30th. I was then diagnosed with stage 1b1 on April 8th and had my operation on May 4th. I received a call from surgeon on 15th to say all clear and my margins are good so no further treatment needed.

I'm now trying to cut down my dihydracodiene to 1 at night. I started walking Monday and can manage about 25/30 mins of a slow pace but manage to cover about a mile. Starts pulling and feeling heavy by the end. Finished my injections Monday and my folic acid (had 25% blood loss during surgery which left me anemic)

Struggling mentally to get my head round things as it's all happened so quickly. It's very surreal and struggle to say the word cancer as I don't feel like I am justified in using that word as my journey was so quick. Sleeping is a big issue...since the op I am all over the place despite being on sleeping tablets for 3 weeks. Also having night sweats and hot flushes waking with pains in my legs.(ovaries were left in so shouldn't be menopause related)  get very tired very quickly but then struggle to sleep which is frustrating.

I'm still quite numb all over, top of left leg and part of down below too. But pain wise not to bad just niggles etc and definetly notice when I have done to much! 

As for alcohol...I haven't had any yet but not a big drinker. Once I'm fully off pain meds will definetly have a gin in the garden when the sun comes back!

Sex...I'm single...anxious about my next encounter whenever that will be! I have tried external masturbation but stopped as pulled on my tummy muscles (had six pack cut and now have 8 pack according to the surgeon lol) so will leave another few weeks!

Work...I've been signed off till June 21st initially...I don't think they will let me back till I have seen surgeon which should be august/September. I am definetly not rushing back as job is stressful mentally and I want to feel stronger physically. I am lucky I get full pay sick so I don't have that pressure of going back to soon. My surgeon said 12 weeks is perfect to be off...my boss isn't expecting me back for 12 weeks.

I have 2 children, my daughter  (she's 14) has stayed with me to help out and my son (he's 4) has been with dad fulltime since operation. I'm conscious he will be home soon so I need to be fitter and stronger as he is a active child and doesn't stop! Bit anxious about this!

I hope you are doing ok...sorry if my message is random I'm half asleep but know I won't sleep till early hours! Nice to read about stories of people who are in the same boat as me. Been kinda lonely lockdown with no visitors or people popping in. 

Message me if you would like to chat

Take care

Amie x

 

LaurieBeth

I can't tell me how much it lifted my spirits to hear from all of you and to have it reaffirmed that this is just a long, slow process that takes a lot of patience. You all also had me laughing at all the things that are so relatable.  It seems that all of us are just going to have to really double down on our patience and embrace a slower way of life while we heal.  Easier said than done, but accepting it will help.  I think after a good first couple of weeks I thought, oh, I will be up in no time!  That was overly optimistic.

Another thing that is hard for me is that once I got my good results, everyone I know has moved on from this.  Obviously, I don't expect people to put their lives on hold worrying about me, but for most people, this is over now.  For me, I have barely begun trying to process what has happened to me.  I asked one of my friends to run an errand for me this week and she said she forgets I still hurt because I look so good.  I appreciate that I don't look like a hag anymore, but it is frustrating for people to think that this soon out from this surgery and this experience that I am totally normal. This was similar to my very messy divorce.  Two months after my husband moved out people seemed to think all was fine now, when I was just at the beginning of processing.  

 

I guess it is a learning lesson on how I need to treat other poeple in the future, realizing that the emotional impact of an event sometimes happens long after the event itself.  And as for me, I ordered two more puzzles and opened up a coloring book today.  I also made a list of some new releases of music I want to check out, and I may watch another show on Netflix.  Just going to try to keep working on my patience and stillness, and to try to let this be an overall growth experience.

And as I have said many times through this whole journey, and as I have been reminded on here many times, one day at a time.  And today is a beautiful one so far.

LBA 

11/18Abnormal Pap CINIII

12/18Colpo confirmsCINIII

12/18Cold Knife cone biopsy confirms CiNIII, clear margins-doctor suggest hysterectomy

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 Diagnosed with invasice cervical cancer, no clear margins

5/12/20Radical Hysterectomy, Lymph node dissection, ovarian transposition-Staged 1B1-no further treatment needed

Follow up 9/28/20

 

 

emmatheredhead

Hi LaurieBeth,

If I'd had a pound for every time someone told me I look well recently I could probably afford to take more sick leave!  I go along with it but I find it quite irritating - I mentioned it in therapy and my counsellor said people often say this sort of thing because it makes them feel better to see we look ok (on the outside).  Likewise with people moving on once you get the all clear; I struggle with feeling like I should be back to normal then have this crashing realisation just how enormous everything has been.  Because of lockdown you don't see anyone so noone except those you have at home, know the reality of post surgery recovery.  I also don't expect people to wait around on tenterhooks but it's so hard to convey to people just how much your life changes once you hear the word cancer and it applies to you.  I wish people could understand what it's like.  I find this forum so useful as a result...

I've had 3 weeks of feeling pretty good but can tell I'm feeling a bit off again; I knew it would come (and will come and go maybe forever) but it's a rough ride.  I have some issues with sleeping at the mo, alongside being back at work full time this week so really tired.  Also felt a bit of pain and discomfort - so another surge of irritation and anger that I'm still being affected and my body is not what it was.

Sorry, not the most positive post but as you say, one day at a time - tomorrow is a new day and I have a specific yoga class to do.  Have any of you heard of the cancer charity Penny Brohn UK?  It's based in Bristol (as am I) but is a national charity.  They have a lot fo resources on their website and have quite a lot of online (Zoom) classes - I particularly enjoy the "relaxation room" which they have every weekday.  It's through them I know about the "Caring for Cancer" yoga class which is run by the Yoga for Life project.  It's a free class :-)

Stay well everyone, much love..

 

Diagnosed 12th Feb 2020 with adenocarcinoma, suspected 1b

25th March confirmed stage 1b1 following CT and MRI

31st March radical hsterectomy, pelvic lymph nodes removed, ovarian transposition

8th April advised histology clear, no further treatment required

Follow up due on 8th July

LaurieBeth

Tomorrow I will start week four, and I really have nothing new to report other than, as I mentioned on another post, suddenly I have been hit by the bus of total exhaustion.  I can definitely see small steps in healing  I can sneeze now without feeling like my intestines are going to shoot out of my abdomen and with minimal pain.  Getting up and down from a seated position is easier.  I can bend over and pick something up if I need to.  All but two of my steri-strips that went on after my staples came out are gone and my incision looks really fantastic.  It is going to be a cool scar. 

 

But this sudden exhaustion is taxing.  I went to the sofa to rest after lunch today and woke up two hours later.  Thank goodness my kids are 12 and 10 and are very responsible.  It was seriously like I had fallen into a coma. The annoying thing about it is once I nap like that, the rest of the day is just kind of wasted. I can never really find motivaion or energy to do anything.

It just seems like a strange symptom to appear suddenly at the end of week three, but, as I have repeated over and over, I don't think anyone really understands what a major surgery this is until facing it.  I still get very swollen and sore at night, whether I walk and do chores or not. My evenings are my cuddle time with an ice pack or heating pad.

I am mostly staying in good spirits, though I have days when I am restless and annoyed.

But tomorrow, I head into week four.  And I am taking a small trip with some girl firends to a beach house later in the week.  The ride will not be fun, but once there I am basically going to enjoy being kid free and waited on by some friends.  It may be a little hard physically, but I think it is going to be a huge help mentally.

One day at a time.

 

LBA 

11/18Abnormal Pap CINIII

12/18Colpo confirmsCINIII

12/18Cold Knife cone biopsy confirms CiNIII, clear margins-doctor suggest hysterectomy

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 Diagnosed with invasice cervical cancer, no clear margins

5/12/20Radical Hysterectomy, Lymph node dissection, ovarian transposition-Staged 1B1-no further treatment needed

Follow up 9/28/20

 

 

FeelingTheFear

Hi Lauriebeth! 

So great to hear from you! I am 2 days behind you and feeling the exact same way, the tiredness! The brain fog! The day passing by in a sleepy blur! I have so many "productive" distractions I want to get on with but really I just want to wedge myself in pillows and close my eyes and listen to some mumbling on the tv or radio playing quietly 

I have exactly the same thing with swelly belly, I have this new crease/skin fold that extends from the left edge of the scar and runs right the way along my left hip, it looks like an overhang! It isnt there in the morning, but makes an appearance by lunchtime and sticks around all day. Thank god the puffiness in my pubic area is calming down now, still not totally gone, but I no longer have to cut notches in the leg holes of my specially-bought massive panties! 

I have however started to have some watery discharge which is a nuisance but the nurse told me its normal, and thinking about it, it's a bit like when I had the LLETZ :-/

I'm still sore inside but like you I can now pick things up off the floor and getting out of bed or a chair is becoming more of a fluid motion than some sort of military tactical manoeuvre! I have to remember not to push my luck, as tonight I decided to remove my toenail polish, shave my legs and do an exfoliating salt scrub, by the time I had finished with this ambitious "pamper" routine I felt I had been kicked in the guts, hence being awake at 3am and posting on here while I wait for the painkillers to kick in! It's so easy to give in to the urge to be "normal" before my body is really ready for it

The beach house sounds like a really lovely idea and a well earned treat to look forward to :-) I hope your friends will ensure you get the A-list treatment and you can really relax and enjoy and feel special xXx 

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

FeelingTheFear

Hi ladies!

Today is officially the start of week 4, I felt good yesterday and pushed my luck again- too much lifting, bending, walking and by the end of the day I was shuffling like it was week 1 again! Also it seemed to make my bladder so angry. Good nights sleep though and feeling OK again today but I am going to do pretty much nothing today and put my feet up.

Bit of pressure from work to be back by Week 8, not sure that's feasible but we shall see how it goes over the next couple of weeks. I am napping for 90min in the afternoon every day at the moment.

I'm now officially "allowed" external stimulation and orgasm but I dont know, I feel really nervous about it. I just want to know if it "works" which is basically very functional and un-sexy. I feel like I am a massive turn off to myself let alone anybody else. My husband isnt interested at all, in fact he seems even more scared than me. Maybe its just a bit soon 

Hope everyone else is keeping well! xXx

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

FeelingTheFear

Hi ladies 

So... i can report that it is "functional". But significantly diminished. There was (TMI) no throbbing sensation as before, those parts are obviously all gone now, which for the first time I felt acutely aware of. So far in recovery obviously I have felt sore or uncomfortable in that area but not really aware of "something being missing" until that moment.

Hopefully you will all have a more satisfying experience! 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

LaurieBeth

Hello ladies!  FeelingtheFear, good for you for doing the orgasm experiment right when you can.  I also tried things out on my own, and as you said, it is different.  I can definitely feel the missing parts.  But, I was pleasantly surprised at how active my abdominal muscles were in the process, which was not something I had ever really noticed before. The biggest difference I noticed is that I do not seem to be lubricating much at all....definitely not enough to have sex without some lube help.  I don't walk around feeling dry every day per se....but I am definitely aware of having less discharge overall, which makes sense, of course.  I did some reading and it seems like the lubrication situation might work itself out over time.And if it doesn't....it is ultimately a small price to pay for another chance at life. But, I am also going to let myself mourn it all too.

Overall, in the last four days or so, I noticed some real improvements.  I can go a good long time without thinking about my abdomen, which was unthinkable even just a full week ago. I still get swelly belly every night and am sore by evening, but I am starting to get back some feeling in the huge numb area around my incision, and I can finally sleep on my side comfortably--I tried my stomach and it did not hurt, but it was definitely not comfortable, so we will try it in a week or so.  I feel pretty good overall.  I had a really nice trip to a beach house with some friends.  I took a lot of long walks alone on the beach and was able to think and process all that has happened to me.  I ate great food and had lots of conversation and laughs with my friends. Even drank a few cocktails.I am home now and it wore me out, but it was what I really needed to get my head straight.

Tomorrow I start week five.  It is really amazing to me to already be there....this has seemed so slow and so fast at the same time.Much like it has seemed so much easier and so much more difficult than I had imagined. Hoping for some real improvements over the next two weeks, but I definitely think my recovery will be more along the eight week time frame than the six week one. But, one day at a time, and they do keep getting better!

LBA 

11/18Abnormal Pap CINIII

12/18Colpo confirmsCINIII

12/18Cold Knife cone biopsy confirms CiNIII, clear margins-doctor suggest hysterectomy

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 Diagnosed with invasice cervical cancer, no clear margins

5/12/20Radical Hysterectomy, Lymph node dissection, ovarian transposition-Staged 1B1-no further treatment needed

Follow up 9/28/20

 

 

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Moving forward from a cancer diagnosis