Radical hysterectomy.

Hi,

   I've recently been diagnosed with early stages cervical cancer. I'm due to have a Radical Hysterectomy and pelvic lymph node removal in 2 weeks time.

I would like to hear your own experiences of the surgery and recovery period or any advice anyone may have? I appreciate everyone has a different experience with surgery but any advice would be appreciated. 

I had a c-section 6 years ago which is really the only thing I could compare it to in regards to having to rest afterwards, no heavy lifting etc. 

Thanks in advance. 

Emma x

Hi Emma

Welcome to the club nobody wants to join! 

Im 11 weeks out from my RH now and doing really well.

If you do a search on the forum you will find a thread by lauriebeth entitled Radical Hysterectomy where a few of us posted our initial recovery experiences in quite some detail:

https://www.jostrust.org.uk/forum/cervical-cancer-–-treatment/radical-hysterectomy-9

Your recovery will feel different depending on whether you are having the open surgery, as we did, or the keyhole (laparoscopic) surgery. Also whether they are leaving the ovaries or removing them as well. So once your surgeon gives you the detail around the plan then let us know so we can try to give you the most relevant advice 

If you have any specific questions I dont mind trying to answer them, you can PM me if you like.

All the best xXx

Thank you for replying, I'm pleased to hear you're feeling better and recovering well. I'll be cut open for the surgery and the surgeon has said he will keep my ovaries (unless he finds something he shouldn't) so I don't go through early menopause as I'm only 34! 

Thanks for the advice regarding the link, I will have a read through. 

Take care x x

Hi Emma,

Thats the same open surgery as I had, and being 36, I got to keep my ovaries too. The best things i bought in prep for my surgery, in no particular order:

Big knickers, the belly button warming 100% cotton type, in the next size up. Pack of 5 from m&s (I actually got 2 packs as these were the only pants I could wear for a few weeks) 

Long t-shirt nightie and loose maxi dress, comfy wire free bra 

A long charger cable for your phone in case the plug is in an awkward spot in hospital or in your resting nest when you get home

Cushtie microbead cushion off amazon (to hold against your tummy when walking, laughing, coughing, sneezing, getting out of a chair)

Lactulose (you may be on opioid pain relief and you do not want to get constipated) 

Nice lip balm & nice hand cream 

Water bottle u can sip from (no spill type) 

A largish make up bag to hold all my necessities in so I could easily transport all my stuff from one resting place to the next (tablets, lipbalm, phone, headphones, wipes, etc) 

paracetamol and ibuprofen as the hospital sent me home with only enough for about 3 days. They also only gave me only 2 pairs of TED stocking which I had to wear every day for 28 days, so once I got home I ordered more in my size off ebay 

There is an ebook called SMILE by Caroline Williams which I downloaded on kindle and it is a good read of her account of the surgery and recovery and pretty much consistent with my own experience.

Headspace app subscription- free trial is often available!

Seems like a lot but probably you already have half of these items at home already! 

Hope this helps with the practical side of things, 

Xxx

1 Like

Thank you so much, i really appreciate all of the advice. It's such a whirlwind isn't it but I'm trying to keep positive about it all. It's nice to hear other people's experiences, hope you're feeling ok now after your surgery. Xx 

It is a whirlwind for sure and it all happens so quickly (thankfully). You just strap yourself into the rollercoaster and the doctors will deal with the rest and you'll emerge the other side, slightly windswept and a bit wobbly but amazed that you got through it ....

I'm really grateful that overall I've had a relatively straightforward recovery, I am very much appreciating small blessings like every day my husband and I go for a walk in the evening. I was really strict with doing as much walking as I could, building up day by day from the time I got home and I think this does help both physically and mentally xXx

Hello!  I am the LaurieBeth who my surgery buddy FeelingTheFear was mentioning.  I am at week 12 post RH and am back at work and feeling probably about 90 percent these days. The above posts really have everything covered.  I also bought a little rolling table that I could move from my bed to my recliner, etc, and some wedge pillows to help prop and arrange myself in bed.  Sleeping the first few weeks is not so easy, and getting up from bed is an acrobatic feat,  The pillows helped.  

 

The surgery was actually not as horrible as I had imagined, but you will have a rough couple of days of up front.  The recovery is slow.  Little improvements each day for a good long while.  But at 12 weeks it all seems a bit like a dream.

Just gear up your patience and like FtF said, start walking as soon as you can and keep at it.  In the end it will help you heal more quickly even if it is slow going and unpleasant at first.

Feel free to PM me for specific questions or support!

Thank you for your advice Lauriebeth, pleased to hear you're now feeling better and back at work. I just think for me it's the not knowing that I'm overthinking about but reading all the posts on here have helped so much. I'm worried about being put to sleep but I keep thinking positively and need the surgery to be cancer free so will do anything that it takes. 

Thanks again for your reply xx 

Hi Emma! 

I am so sorry you found yourself in this position but it's great you end up here! The ladies here are amazing and the forum is very informative.

I had radical hysterectomy done last Wednesday altough mine was laparoscopic (they told me to prepare for open but on the day decided that I'd be a perfect candidate for the keyhole surgery) and FeelingTheFear has been my guide and support - I can not thank her enough! She talked me right through everything so I knew exactly step by step what to be prepared for.

The fear of the unknown been killing me  so knowing what will happed made my life so much enjoyable (well as much as it could be with the cc diagnosis). 

The list above is amazing and cushite is my best friend! 

I got prepared for watchig Netflix and reading books but none of this happened. It is uncomfortable to laugh ;) and the only thing I could do was sleep! 

I am still inpatient as have some bladder issues but hopeing to be discharged tomorrow. 

If you have any question feel free to pm me however our surgeries differ in the recovery.

I am sure all will go smoothly and just try to enjoy the days before the operation - spoil yourself and do nice things, this will lift the spirit! 

Lots of love 

Xx

Hi Emma

So im 3.5 weeks post RH and FeelingtheFear and LaurieBeth have been great support in confirming everything I was going through was normal. I was so prepared for the uncomfortable feelings and the pain from the procedure but it was the little nigglely bits that I didn't prepare for....ie:days on end sat on a toilet knowing there's a bowel movement in there somewhere but you ain't got the strength in ya tummy to do naff all about it haha!! 

All the comments on here have pretty much covered everything, and believe it when its said everyday does get better, slow and steady wins the race.

My own little life saver may I add has been my V shaped pillow....its seen me through many a dodgy position these past few weeks and made it possible for me to get pretty decent nights sleep from coming back home.

Like the other ladies im happy for you to message me anytime if you need any advice, reasurrence or support

Lisa xxx

Sorry for my late reply Lisa and NightFury. I've had a busy weekend celebrating my wedding anniversary and haven't had chance to look at my messages.

Thank you both for replying, I'm pleased to hear you're both recovering well from your surgery. As far as I'm aware I'll be getting cut open as there hasn't been any mention of keyhole. I've taken all this advice on board from all you lovely ladies and feeling at ease about it all now (after a few wobbles!) I've got lots of things to keep me occupied in hospital, plenty of books and magazines but to be honest I think I'll just want to sleep. 

Take care of yourselves 


Emma xx

 

I am booked for RH on Thursday! Not so worried about the surgery but really not looking forward to the recovery time ... my family always laugh at my inability to sit still for more than a minute!! Is there anything anyone can recommend to make me comfortable while I "sit this one out"?

Hi KittyBoo

How is your surgery being done - open or laparoscopic?  It makes a difference to recovery.  I had Da Vinci robot assisted laparoscopic surgery.  My recovery was hampered because I was stuck with an indwelling catheter for a month afterwards as my bladder stopped working.  After that I went onto intermittent self catheterisation which I still have to do - don't mean to scare it seems I was exceptionally unlucky in terms of nerve damage to my bladder.   I too am a born fidget - actually found I was more comfortable if I kept moving (within my limits - no heavy lifting and nothing strenuous) but resting when my body was telling me to.

x

Hi Jazza

Its going to be open surgery, surgeon is planning to take lymph nodes and 5-10mm of surrounding tissues along with everything else. He tells me I will be cathertised and have drains for several days ... Will I be able to get out of bed with these in? Been told minimum of 5 days in hospital, tempted to take my degree course work in with me but not sure if I will be well enough to work. My fiance is worried that I won't want to have sex anymore (not that I have for months anyway) 

I think I will feel more settled and less frantic when I finally have my surgery, it all feels a little surreal at the moment 

 Hi KittyBoo

I had laparoscopic surgery which has quicker recovery times than open surgery.  Going on my own experience the medical staff will want you up and moving as soon as is reasonably possible because it helps recovery and is an important criterion for when you are suitable for discharge.   The morning after my op a 'tough love' healthcare assistant appeared and said 'right you need to get up now' - 'without asssistance' - it was a bit scarey at first because I had the urethral catheter and 5 dressings on my abdomen covering the keyhole slits and  I wasn't sure how my 'new' body was going to behave.  However after much groaning and manoeuvring this way and that I eventually managed to get myself from the bed into a chair.  'Great' says the assistant and then left me with instructions to walk up and down the corridor as much as I could which I managed a few times during the day in a shuffley sort of way; apparently if there had been any concerns about my moility I would have been seen by physiotherapy. 

I was discharged late afternoon (with catheter equipment plus painkillers) having had only one night in hospital.  Contrary to advice I went home on public transport (40 minutes bus + train with my husband guarding against anyone bumping into me) and then walked (very slowly) a mile back to my house.  It helped that I was generally very fit - pilates, running and weight training.

Like you I had a part of me focussed on the medical side and the other part thinking about how I was going to carry on with my everyday life - work, sex etc etc. All I can say is there is no right or wrong way - it will be your way - we are all different in how we cope with the treatments both physically and mentally. My cancer 'journey' has brought home the wisdom of the saying 'we should cross our bridges when we come to them'.

x

Hi Kitty boo,

I had open surgery similar to what you have planned and I stayed in for 5 nights. I was ready to go home by then and was lucky only to have needed the catheter and drain for 2 nights. It is possible to get up and shuffle about while you have the wires in place but getting in and out of bed by myself was a difficult and painful process so I was glad to have my husband to help me with it once I got home.

In hospital I couldn't even concentrate on TV, so it might be ambitious to take coursework with you. Having said that I was on fentanyl for 3 days and then stepped down onto morphine for 2, so I was pretty much in a daydream. There are whole text message chats on my phone from that time that I have no recollection of having taken place! I did make a list earlier in this same thread of things to help during recovery, hopefully you will find it useful xXx