Radical hysterectomy in 6 days.

I thought I would come back and update. I had an EUA yesterday ( which was no big deal of course) as they needed to gather as much info for as possible for next Thursday. I am a little complicated as I have previously had my colon removed for cancer and have an internal J-pouch ( a reservoir created put of my small intestine so that I don't have to wear external bags. This is one of my main concerns at the moment, whether the uterus is adhered to it. If it gets damaged I will have to have another ileostomy.)

 

I have been graded as 1b1, and they are very reassuring at the moment that surgery should be the only treatment needed. ( I know it's major surgery, but it would be a huge bonus if I can avoid chemo and radiation therapy - if my pouch survives the surgery then chemo and radiation would probably wreck it.)

 

I also have to have a longitudinal cut, not key hole ,as they need to be able to see what they are doing. They have been excellent I have to say- I had a pretty bad experience with my first surgery but I can't fault either of the two hospitals who have dealt with me this time. They have the notes from my first surgery and an experienced colo-rectal surgeon who creates pouches is going to be present in theatre - at least I know of anything goes wrong,It won't be through want of trying on the doctors' parts! I have already met my anaesthetist and he is really funny- the whole team have been wonderful. It makes me feel teary, they are so nice ( but I worked as a nurse for years and always tried to give the very best care, so it's nice to receive it for once!)

 

I am really concerned about  the stats for lympheodema and bladder damage, so that with my pouch are my main concerns . Also has anyone had a non key hole radical who can advise me in thinking I am likely to be in about 7 days, please? And how long I will be before I can walk easily? I had booked a b&b stay at the seaside for me and my youngest for 5 weeks after the op, and I can arrange transport there but of I can't walk to the beach with him it's pointless really. I don't feel I can just wait and see, as it's a lovely b&b in great demand and I don't want to mess the owners around as they could rebook  the room out easily at this stage. My previous surgery was keyhole so very different. 

 

What a journey this! Reading some of the posts on here is heartbreaking- I feel so blessed that I am facing this at a much greater age than some of you on here ( I am 55.)

Hello :) 

you definitely sound like you have been through a lot yet seem to be very positive which is great :) I had a radical h about 8 months ago via a longitudinal cut as I was pregnant at same time and had to have a c section.  I didn't have any pain killers as I was breast feeding so had an epidural for 2 days as pain relief and then just took paracetamol and ibuprofen after this.  I had to travel home 7 days later which involved a 4 hour ferry trip and coped well, I'm not going to say that I was off running but 3 weeks later my doctor did allow me drive.  I would have felt ok at 5 weeks.  I found the cut wasn't too bad and healed really amazingly well but I have always been fairly active which I think definitley helped.  I also had to pick a new born up pretty much straight after operation which could have even hindered my recovery.  I would say just take recovery nice and slow and give yourself time, a nice walk on the beach may be ok but I wouldn't be too sure about a 5 mile hike.  

Buy some blooming big knickers too that come up over cut, they were a live saver :) 

wishing you all the best xx

Thanks for your reply Zoe. I think you are a lot younger than me- I can't see me recovering as quickly as you did! I already wear Bridget jones knickers, lol- I gut used to them after having my first surgery and prefer them now, I'm a single mum so no bloke to wear sexy undies for anyway! I think the beach is perhaps a half mile walk- they have told me I may need to catheterise for 6 months or even for life- were you warned of that?

Hi, I had to have a catheter for a week.  They took it out the day before I went home to see how I got on, I then had issues with a build up of lympthatic fluid which started to leak and then they told me that I may have to have to the catheter reinserted.  My bladder was scanned everytime I passed water and eventually it started to empty enough for them to be happy enough to send me home.  I was then told to keep a close eye and that I may have had to have it back in but I managed ok.  They told me that the bladder is such a sensitive organ and that it doesn't enjoy all the moving around during the operatio, hence, it can act a bit silly for a while afterwards. I wouldn't worry yourself too much about it. I had a bag attached to my leg in the end which I just emptied myself and could have easily had this on for a while.  They just like to be careful with it.  i would have thought 6 months would be worse case scenario and that you'll have it removed more than likely before that (am not sure if your previous operation may mean they will be extra careful).   To be honest, it was a pain when I started having to go to the toilet :) 

i suppose they have to warn you of all the worse case scenarios but generally it's not too bad.  I did also have 5 lymph nodes removed so was at risk of lymphadema.  I have had a little swelling in the top of my thigh which freaked me out at first but I'm just really careful and massage this with moisturiser daily and wear a support stocking which very much just looks like tights :) that seems to be helping a lot now. 

i just see it as a positive now that I luckily didn't need chemo in the end and that the operation was a success.  The little quirks after are just some of the niggles that become the norm very quickly.

My knickers and catheter obviously did the trick anyway as my partner has just proposed, only took me 9 years and a cancer to get him sorted :) things a woman has to do :) xx

 

Hi Ostrich :-)

Blimey you've been through the mill! You sound like a very resilient woman and that is a great bonus. How is your general health/fitness/BMI? Those factors play a pretty large role in recovery time I believe. I was 50 when I had my vertical incision rad hyst, I had my catheter out on about day 4 but it took ages and ages for peristalsis to kick back in again after the op, which was the worst bit as far as I was concerned. The trapped wind was brutal! Do your best not to read stats, remember, the statistics have been collected from other women not you, and data that has been collected from other women does not affect your own recovery so it is arbitrary.

It's all quite a long way behind me now but I think I took my first steps on about day 4 (must have if the catheter had been removed eh!) And thereafter I was walking up and down the ward all the time trying to get the digestive system working. Obviously you are a different case but I wouldn't cancel that holiday in any great hurry, I reckon walking half a mile after five weeks should be fine, is it steeply hilly? That may make a difference. 

I had 17 nodes removed, lots of gentle walking and no lymphodema :-)

Have you got holiday insurance? You may find that, or health insurance, covers you for a last-minute health-related cancellation.

Please feel free to ask me any other questions that crop up.

Be lucky :-)

Tivoli

Hi Ostrich

I had a vertical incision Wertheims Hysterectomy - also had a 10cm large cyst on my left ovary and a fibroid on my womb so 2 surgeons were needed - lucky me!  Anyway I had the op on a Tuesday and was discharged the following Sunday.  The catheter was removed on the Friday night whilst in hospital and all was fine with that.

I had nearly 30 lymph nodes removed and have had no lymphodema.  Had an achy thigh for a while but that cleared up after a few months.

I was 57 when I went through it and recovered a lot quicker than I thought I would.

Wishing you well for your op.

Hugs

Cheryl,xx

I am going in on tuesday for my RH and being curt, hoping its not muhch difference to a c section. 

Just want it done now keep in touch on this journey that we are all on.

 

Christine 

Goodness Cheryl! I thought you were loads younger than that :-) Only as old as you feel eh!

xxxxx

Tivoli