Trachelectomy - what to expect

sorry I seem to be a serial poster at the moment!

I have my trachelectomy booked for Monday.

Any experiences from others would really help me. I don’t mind if there are scary parts, I would rather just know what to expect.

I have been told that they are doing vaginal trachelectomy and a bikini incision for lymph nodes.

How long should I expect to be in hospital for?
What should I bring?
Were you in a lot of pain?
How long did it take to physically recover e.g. be able to go back to work and drive
Little things that they don’t tell you like surprise injections - I have already had the blood thinning one (ouch)

Thank you in advance x

Wish I could help! Never apologise for posting! That is the whole point of the forum!

Be lucky :-)
Tivoli

Hiya - I'm 3 weeks post op, I had my trach done on Friday 28th Oct. Everyones different but I honestly feel fab already! Ive done a lot of walking as obviously cant drive so thats help keep me mobile.

The scariest part for me was being put to sleep, I was in a bit of a state so they did it all quite quickly... went to sleep about 11.45, in recovery by 4.45 & woke up just after 5.

The worst pain for me was in the shoulders! Where they pump you with so much gas, although ive now been told you can ask them to take it out so I would defo recommend that!

The Friday eve was a write off, Sat i was very teary, I couldnt really walk unaided but by Sunday my other half helped me have a shower then Monday the catheter came out & i went home Mon afternoon. I wanted to go home earlier but 3 nights is usually the norm but ive heard ladies be in for 24 hours, a week so it just depends how you're doing.

I had robotic assisted surgery so mine was all in my tummy - 6 incisions & theyve healed just fine! Where it was a weekend i didnt actually speak to my surgical team but i spoke to a couple of other consultants who said all went well as expected, they thought they saw a dodgey looking lymph node but it came back negative... yay! My full results are on this Tues coming so im praying for everything to be fine!

Id say bring period pads as you'll be bleeding, they will provide some but i dont really like them. They provide towels for a shower. Take magazines, music, snacks, slippers, they provided me with a dressing gown but i took another old one in case. Loose clothing, facial wipes just to freshen up, toothbrush. Maybe some herbal tea incase you do get shoulder pain its supposed to help. Charger for your phone. 

Injections yer 1 a day for 28 days. My other half does mine for me. Tablets to take too. One of my surgical team nurses actually got stabbed with one of my needles so i had to have a hiv test after but all was fine! They do lots of observations after the op like blood pressure, blood tests etc. 

I can honestly say after a week i felt pretty ok, still get belly pains (period like), still bleeding a bit but not heavy. They'll make sure you can pee before you get to leave hospital - it didnt hurt just felt a bit weird at first. Im not driving yet but i reckon id be fine but im just waiting for doc to confirm i can on Tues. Hospital usually only give 2 weeks med certificate but you can get it from your docs - ive got a 6 week one as i want to make sure im fully recovered. Obviously no heavy lifting for a few months id say but i have a 10month old baby so thats a bit hard! 

I hope some of that helped, anything else i can help with feel free to ask or private message me. Wishing you all the luck for your op... you'll be fine!

Ive been doing a lot of Reiki, mindfulness, meditation, relaxation stuff & counselling all of which has really helped to keep me calm & thinking positive. If you have a local Cancer Support Centre id defo recommend them they do a lot of complimentary theropies that really help! Sending positive thoughts. Xx

Hi ChloeSimone

Thank you for your reply.

Yeah I found that quite daunting when I had my cone biopsy a few weeks ago but at least I know what to expect this time.

I have heard that the gas hurts, how would they take it out?

I have a bag with my dressing gown, nightshirts, slippers etc and went and bought some peppermint tea today.

I think I am just scared as it is a big incision and everyone else seems to have been able to get the kind you have so thinking of mine like a caesarean type incision totally freaks me out. I have been told I will have the catheter in to go home and have it for 2 weeks in total which really disappointed me.

I am still bleeding from my cone so hope they realise this and it isn't a problem. They didn't ask when I went in.

I had a total meltdown today my poor boyfriend managed to comfort me though.

I went for reiki a couple of weeks ago and ended up crying - bit awkward. I have actually seen a counsellor this week but I was already on the waiting list for that before this happened so hoping i can continue when I am able to drive to the appointments as even the 1 session helped.

Thank you so much for all of your advice x

Hi Misstell,

Wishing you all the best for your Trachy on Monday. Just wanted to pick up on the lymph node removal as I had that too at the same time as a RH. Don't be surprised if you have some numbness in your thighs as a result. No pain but a slightly odd feeling. It will come back though after a while. Hope it all goes really well and that you have a quick recovery. Big hugs X

Hi Rachel

Ok thank you for the heads up :) x

Hope op went well xx