1 week after radical hysterectomy

Cervical cancer treatment
1

Hi

I am 1 week after a laparoscopic radical hysterectomy and lymph node dissection with conservation of ovaries after cc diagnosis of 1b1. In hospital I was grand - I had pain associated with major surgery and thought I was going to have to learn to self-catheterise as my bladder took a while to wake up but it all kicked in in the nick of time. I had my op last Thursday afternoon and got out of hospital on Monday 25th (my birthday). I got my birthday wish to spend it at home with the hubby and the babes. I had been feeling ok - tired and sore but was keeping going. But for past 2 nights I haven’t been able to sleep (maybe 2-3 hours a night) and today I’ve woken up feeling like I’ve hit a wall. I had some numbness at the top of my left leg after surgery which my nurse said was due to lymph nodes being removed and would take a while to sort out. It has changed from numbness to really sore pins and needles. Also there’s a bit of swelling and groin pain on my left side but no redness on the leg or the groin. I can’t bear pants on - so my hubby bought me a pack of boxers which helped. I can’t bear pjs either so am back in nighties.
My wounds are throbbing today I have 5 mini wounds with dissolving stitches and they are sore to touch to point I can’t bear a quilt or anything on them. They weren’t like that in hospital. Again I don’t know if this is just them healing.
But the worst thing is that today I feel so low and emotional. I have been so upbeat up until now even after the surgery I don’t know why I’m feeling like this as nothing has happened to cause it but I just want to curl up and cry.
My consultant has been so positive throughout that they were going to “cure me not just treat me” and after op he again reassured me that he’d seen no visible sign of tumours but we had to wait for results from lab, so I feel a real fraud for feeling upset and emotional.
I was expecting to feel sore physically after surgery but not emotionally raw. Has anyone else felt like this after surgery and does anyone have any tips on what to do?
Thanks
Tanya

Jan 2016 went for routine smear

feb 2016 called for colposcopy after abnormal cells detected biopsies taken

april 2016 confirmed abnormal stage 3 precancerous cells and given lletz treatment told see you in 6 months

26 April 2016 called in to see consultant told had cancer (world fell apart) believed stage 1a1 red flagged for cone biopsy

19may 2016 cold cone biopsy to stage cancer waiting for results

1st June told another tumour found in biopsy staging changed to 1b1

8th June discussed at mdt meeting and moved to another hospital. Also on waiting list for MRI

16th June MRI

21st June met new consultant radical hysterectomy advised given surgery date 21st July

21st July laproscopic radical hysterectomy with ovary conservation and lymph node dissection

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Hey sweetie. 

I'm sorry to hear to hear your feeling so low. You've been through so much emotionally, physically and mentally you're bound to have a bad day or two!

You must give your body time to heal, your wounds will be sore then they will itch, it's all part of the healing process. Just rest as much as you can.

I had my cone yesterday, and now I'm nervous to find out what stage I am at, keep thinking worse case scenario whereas yesterday I was ok about it all.....

My consultant has advised me I'll most likely be having a hysterectom, I'm ok with that too just nervous of what's to come. I'm a bit of a control freak and I'm not in control of this whole situation! 

Hope you feel better soon, rest up, have a cry and take regular pain killers.

xxx 

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Hi Tanita:

Sorry you're feeling low. 

Are you running a temperature? If you're running a temp call your doctor - you may have an infection. My incision sites were tender but never throbbed. If they don't calm down soon, I would double check with your doctor, even if you are not runing a temp. The groin twinges etc I think are part and parcel of the aftermath of surgery. Your body is getting starting to heal itself internally so there will be pain as all the bits get situated again. Do you have good pain meds? If you can't sleep because of the pain you need to get something to help - you need your rest. You must listen to your body. Girlwiththemostcake was up and out and on her bike - literally- within a fortnight. I felt good, but took it very very easy - lots of sofa and netflix. Do whatever seems to help and make you content - we're all different. Do not lift anything more than 5lbs for the first weeks, including those babies. Gently walking round the block when you feel like it helps enormously.

I'm sorry you feel low. You will feel better soon, I promise. You've just had major surgery and you feel like crap. It's OK to have a good cry; all this stuff is so stressful.  You've had to keep the adreneline going for a while now - the diagnosis, the waiting, the surgery - and now you're drifting back to your equilibrium. Give yourself some time - you'll bounce back.

Take care, love t x

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Hi Michelle 

Thanks so much for taking the time to reply to me, especially so soon after your cone biopsy. The waiting and not knowing is the worst. Even after my cone when my staging got changed from 1a1 to 1b1 the not knowing was the worst - the diagnosis though a shock was at least something to work from. I hope you find your answers soon. If you do need a radical hysterectomy or a simple hysterectomy let us know and we'll tell you what you need and don't need etc for hospital. I did that before my op and it was so helpful as I'd packed only pyjamas but hadn't factored that you can't wear pjs and a catheter. I understand the lack of control thing as well it drove me mad. But the consultants that perform these ops are highly trained and really know their stuff. My wounds are starting to itch and I stupidly scratched my belly without thinking last night which might be why it's sore today!!! 

I spoke to my McMillan nurse today and she advised it sounds like neuropathic pain in my upper leg which she assured me is perfectly common after radical surgery she told me what to ask for from my gp and I have new painkillers to try tonight. 

I hope you continue to heal from your cone biopsy. Rest, eat chocolate , enjoy a bit of time out with friends and family. I know that all kept me busy and sane while waiting for results. 

 

Keeping everything crossed for you!!!! 

 

Tanya xxx

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Teresa

Thanks for replying. I'm not running a temp. I think I maybe tried to do too much too soon. I wasnt heavy lifting but was up and about doing stuff. My 3 babes were meant to be going on holiday with my mum this week to give me a chance to recover but when I was in hospital she fell and broke her arm so that's put an end to that plan. What you said at the end of your message was like the light got swtched on. I have been keeping busy and running on adrenaline but have had to stop which has probably made me think. Didn't think of it that way- so thanks so much for making me aware of that. 

Think I'm going to watch Netflix and relax for next day or 2 and try the new painkillers I've been prescribed. 

I hope all is well with you and that you are recovering well from your surgery. 

 

Tanya xxxx

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Hi Tanya,

I will be three weeks post op tomorrow. I also have numbness down my thighs and across my groin. My consultant warned me that it would take a loooong time to resolve and also said it might feel worse before it feels better. She mentioned pins and needles and maybe a bit of pain, so it sounds as if what you're experiencing is normal.

I have found that when I overdo it and get tired I feel low and tearful, so maybe you have just been doing too much. I think it's natural to have low days. A few days after coming home I was out for what I thought was a little walk with my husband and daughter. When they mentioned they planned to go to a local clothes shop to browse (not far, but further than I felt I could comfortably walk) I had a complete tantrum and sat down on the pavement sobbing. How embarassing!

I hope your wounds start to feel better soon. Three of mine were no problem, one became sore becasuse I acidentally pulled the glue off when I pulled down my knickers and it wasn't quite ready (ouch) and the one below my tummy button seemed bigger and more painful than the others and hurt quite a lot for over a fortnight, though now the glue has come off and there is no scab it feels much better, though still lumpy.

I found sleeping difficult when I got home as I couldn't really get comfortable in bed but that improved about a week post surgery so hopefully you will get some proper rest soon.

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Hi Tanya :-)

Well as far as I can see the trouble with all this awfully clever keyhole surgery malarkey is that it doesn't look as though you have had major surgery when that is exactly what you have had. It's a bit like putting icing on a cow-pat and then the shit flavour coming as a shock. So, you have had major surgery, your poor body is physically exhausted and the way that often manifests itself is copious tears. Let yourself rest. Let yourself cry. Don't push yourself hard.

A whole lifetime ago I broke my arm and asked the boyfriend to help me hang up the laundry. "It won't get better if you don't work it" the idiot said. Umm, it needs to heal first, then you can start working it gently at first, and more as you get stronger, but you cannot hang up laundry the morning after you have knocked the ball off the top of your arm.

So, be kind to yourself. Take it easy. You have just had significant body-parts removed. Respect that.
Be lucky :-)
Tivoli

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I think part of the problem is also the doctors! Mine was very much of the attitude that these laparoscopic hysterectomies aren't such a big deal because they don't cut through the stomach muscle. I think she minimised it to me. Also the RCOG patient information leaflet gives quite high expectations of what you should be able to do and even suggests being back at work after 2-4 weeks.

I did far too much yesterday and feel completley wiped out today.

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Hi girl with the most cake

Loving the name!!! Thanks so much for replying. My consultant told me loads of risks and complications when I met him on 21st June but to be honest I was just completely overwhelmed that day I took nothing in. He gave me an internal examination front and back I had my period it was excruciating and I felt awful after it so anything he said after that went in one ear and out the other. The day after the op he came to see me for like 2 mins on ward round I was still saying questions to him as he was walking out of the ward. He did come back on the Sunday as he was "consultant on call" that weekend and was more approachable that time. He also gave me the "it looks like you haven't had major surgery on outside cos you have 5 wee cuts but on inside trust me you have had major surgery you have stitches galore. Give yourself time to heal"

The wound pain has died down a bit - my wound above my belly button is the biggest and sorest lol. I did feel your pain when I read about the glue sticking to your knickers like a horrifying waxing torturous experience.  

The mc Millan nurse was also a flying visit though I did get her pinned down on the phone this week. Its great to share common experiences with someone else. I couldn't understand why I couldn't sleep cos we got a new bed about a month ago but I've realised that sleeping on my side isn't happening at moment (my usual way of sleeping) couldn't get comfy. I propped myself up and slept on my back last night and result. I also had a real good cry yesterday with my hubby for no reason other than I needed it. I feel much better after letting that go. 

Just taking it a day at a time I went a wee walk round my cul de sac yesterday which made me feel much better and also accompanied my hubby out to visit his parents for an hour which got me out of the house. 

Thats brilliant news your lymph nodes are negative- does that mean no more treatment? My review appt is on 9th August so hoping for same news. 

Hope you have a lovely weekend 

Tanya xxxx

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Hi Tivoli 

Thanks again for replying to another of my posts I love your replies you are so positive!!! 

My consultant did tell me it would take time to heal he used the "5 small wounds look like you haven't had major surgery but internally you have had really major surgery it will take time don't be doing too much/ expecting your bladder etc to work straight away". I guess I'm not that good a patient and have been feeling guilty cos hubby has had to look after me, our 3 babes and my mum who slipped, fell and broke her arm the day after my operation. She was meant to take my 3 down to caravan on holiday for a week or 2 so I had time to recover with hubby but that all changed. I see him running around getting stressed and feel guilty cos I'm no help. I had a huge belly shaking , floods of tears and snot cry yesterday with him and feel much better for letting it all out. 

I am trying to do a wee tiny bit each day using the list of exercises and activities the physio gave me. 

I hope all is well with you over in sunny Greece- here in Ireland it's dull and raining (no change there).

loads of love

Tanya xxxx

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Girlwiththemostcake

That's ridiculous that your doctor was like that!!! It is major internal surgery. Also the patient info leaflet sounds like it needs majorly updated. The one I got from the hospital physio doesn't suggest returning to work until well after 3 months. For week 3 post op it suggests you shouldn't be lifting anything heavier than 1 litre of milk, going for a short walk everyday building it up gradually over 4 weeks to pre-op levels - going to shop etc. And very gradually introducing light housework - e.g you can prepare food  but can't lift the pot or pan. 

I can take a pic and send you a copy if you want? 

Hope you're resting. 

Hope that helps 

Tanya xxxxx

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First of all Tanya, I must apologise as when I replied last I had missed your reply to me. Reading it now it seems your doctor had quite a different attitude to mine. When I saw my consultant prior to the op she said I should take six weeks off work as my job is quite physical. One of the nurses in hospital told me she thought I should take at least eight weeks. When I went back to my consultant a week after surgery she asked "what did we decide about work? 4-6 weeks?". Despite feeling generally pretty well there is no way I'd be ready to go back to work in a week.

 

I majorly overdid things on Thursday with a shopping trip and have really set myself back. Yesterday I was quite sore and extremely tired. Despite doing nothing all day I didn't feel up to going out in the evening as planned. Then today I've been packing as we're going up to Edinburgh and I had a proper full on panic attack. I still feel wobbly from it. Horrid. It's all been a bit of a wake up call. 

 

My husband is great, but I have to tell him my limitations. He's not very good at being proactive and telling me to slow down. Consequently I feel a bit pathetic saying I can't do certain things. A couple of times he has said "oh sorry, I forgot" and that make me feel shit, because I'm thinking "how on earth can you forget?!"

 

The RCOG leaflet I was referring to wasn't actually given to me, but I found it online.https://www.rcog.org.uk/globalassets/documents/patients/patient-information-leaflets/recovering-well/laparoscopic-hysterectomy.pdf

 

It would be great to see the one your physio gave you. I didn't see the physio, though apparently I was supposed to, but my doctor said all they really would have spoken about were pelvic floor exercises as my stomach muscles haven't been cut through so I don't need to worry about sitting, lifting, etc. I have mostly been avoiding carrying shopping bags, but have been lifting my friend's baby! All the advice I was given was see how you feel, listen to your body, blah blah. I'm 43, normal BMI, generally active, decent diet, don't smoke (though I probaly drink a bit too much!) so I expected to bounce back as per the leaflet and am frustrated that it's not that simple. I also find that my manager thinks I should just bounce back too. Even before my op she told me "you get six weeks off for major surgery" as if there was some sort of allocated allowance! 

Sorry for being so moany today. I'm generally pretty positive, but am having a bad day!

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Girlwiththemostcake

You don't need to apologise at all - i think you're doing amazing and all your posts and replies I've read throughout the forum have been very positive. it's ok to not feel positive 100% of the time and to have a moan. I'll see if I can work out how to send you a picture of the handout I got. I'm shocked that there was so little support and advice in your hospital. I saw a pain management nurse, physio etc in mine. My physio said that I can't lift heavier than 1 litre bottle for first 3 weeks then I think I'm allowed to lift a 2 litre bottle etc. She didn't just go through pelvic floor muscle exercises but also talked to me about lymphodema and how to try to avoid it. She didn't just talk she showed me too which was great.

I'm also shocked at your work - mine are giving me 6 months off post op (at least). A colleague had a hysterectomy last year (not cancer related) and took 6 months off so my boss was like you take at least that. My husband is too over protective- at the moment if I move I'm told to sit down and rest!! 

I'd say listen to your body if you need more time I'm sure your GP would give you another sickline. I hope you have a lovely time in Edinburgh. I used to suffer from panic attacks - my top tip is get a paper bag and carry it in your handbag then it's there  if you need it. If you breathe into a paper bag it slows your breathing down as you're breathing back in the CO2. 

I'll see if it will let me send you a pic of the advice list as a private message - if not I'll work out something else. 

 Lots of  love 

Tanya xx