Removal of Pelvic Lymph Nodes- sexy stockings?

Hi all!

I realise my first post about awaiting a radical trachelectomy on the 4th Feb, was a 'bit' long winded. Sorry about that- I think I got on a bit of a roll and found it therapeutic writing it down!

As much as I'd love to hear from anyone who's had a trachelectomy, I realise there are probably more people who've had these pesky pelvic lymph nodes out.

This will be the 3rd op where they've threatened to take them, so hopefully they'll go. But I'm a bit anxious about the repercussions.

I've had a chat with my CSN but I'd like to know how people have found their recovery. And wearing stockings for 6 months! I can imagine that'll be fun in the summer. But if that's the worst thing I have to put up with then I'll take it. Has anyone found better alternatives to the ones provided by the NHS- or shall I just anticipate living in trousers that'll cover them and loooooong dresses?

Any advice would be great, also if any one has got any comments about my other post I'd love to chat :)

J

x

Hi Jenoir

 

I was diagnosed 1B1 at the start of Nov 12 and had a radical trachelectomy and SOME of my lymph nodes taken out for biopsy on 12/12/12.

 

I wasn't required to wear stockings for 6 months but I was definitely a little worried that my legs would swell (my nurse/consultant warned that there would be a chance after they removed my lymph nodes). Luckily for me, my legs were fine but they were a little swollen post surgery and I did make sure I kept moving my ankles and walking up and down the ward as much as possible to get my circulation going! 

My Rad Trach was done through keyhole surgery and I have 4 tiny scars in the shape of a cross on my abdomen which will fade as time goes on...I woke up feeling very swollen and the nurses explained that it was because they use air to blow you up in surgery so that the surgeon can see things properly! I have to say the trapped air was the most painful part!! (Be sure to have lots of peppermint tea and a pillow by the toilet to hold to your tummy when you go at home!) Although, after a few days out of hospital the wind did ease it would be worthwhile having your mum/partner/sister to help with washing your hair and taking you up and down the stairs for a few days post op as the air trapped in my upper body was pretty painful! I would also advise to buy some loose fitting tracksuit pants to wear while your tummy recovers as mine was quite swollen for a week or so :-)

All in all it took me around 5-7 days post op to start feeling 'normal' again..I am 24 so the Rad Trach operation was the best option for me as I would LOVE to have kids with my lovely boyfriend one day! I had some bleeding for 2 weeks following the op and occasionally have some spotting but other than that I feel fine!( Amazing how quickly we recover!)

I was given the results of my biopsies at the start of Jan and effectively given the 'all clear' with 3 monthly check ups going forward! My nurses and consultant have been amazing and I genuinely couldnt have asked for better support and care from all of my loved ones and the team at my hospital that have treated me so far! They are superstars!!

Just wanted to say good luck with your op - feel free to ask any questions regarding the operation!

xxx

Hi Lucy,

Thank you so much for getting in touch and massive congratulations on the great 'all clear' results, you must be pleased :)

It's so good to hear about how well you've done post op. I've had 7 weeks to wait since my last op for the trachelectomy and I think it's just way too much time to drive myself insane! I spoke to my nurse the other day and she mentioned about trapped air and possibly getting shoulder pain- I'm glad I've been  warned of this in advance!

Also thanks for the heads up on the peppermint tea- I'm an avid peppermint tea drinker so will deffo stock up. After my first op (that was a kind of non op because they didn't really do anything) I went into urinary retention in recovery and it was so painful :( I hope that doesn't happen again.

I'm 28 and desperate for me and my boyfriend to have children- we had been talking about it before this all kicked off. So I'm really hoping that this goes well and we can start to look forward. Have you returned to work/normal routine yet? 

Thank you so much for your advice, it's really reasurring. And I hope your recovery continues to go well :)

J

x

Hi J

Thank you :-) I feel very lucky and it has definitely made me change the way I feel and think about life! Kids were definitely something I wanted but to be told you may not potentially ever have them is definitely a shock to the system and makes you review the important things in life!

Luckily my employer has been fantastic and I have been fully paid since my diagnosis and I have been off since then. My nurses advised to take the full 8 weeks off post op so that is what I have done ;-) they said physically I should feel normal after 3-4 weeks but some mental recuperation may be needed to fully recover from the whirlwind! I feel ready to go back to work now and return on the week commencing 11th Feb :-) will be nice to get back to 'normal' and have some structure again! There is only so much daytime TV I can watch / yummy food I can eat before turning into an actual potato!

I am sorry to hear about your urinary retention, I had a catheter after my op which was removed after a day but I have to say peeing did feel a little funny up to 2 weeks after the op! will cross my fingers for you that it won't happen to you again... I guess just ensure you drink plenty of fluids so you can go easily and monitor it so that you can tell nurses if you feel any of the symptoms you had last time - but hopefully the catheter will relieve any retention in the first instance!

Anyway let me know how it goes! You will be feeling much better for valentines day :-))

xxx

That's brilliant your employer has been so supportive- it's one less thing to stress about.

Unfortunately I had just started a full time masters course, so had finished work and was 3 months in. I've chosen to suspend my studies because the course is so intense, there's really no way I could miss more than 2 weeks. The uni have been brilliant and really supportive- I can return either this November or next year.

I think it's all going to depend on if/when I can try to get pregnant though...I think that's what I'm finding difficult- not knowing what I'll be doing in 3, 6, 9 months?! I'll have to get a job at some point but I don't know when or if I'll return to my course. 

I bet you're really looking forward to getting back to work :) I'm so fed up of daytime TV! I sound like I'm being a bit of a whinge and I do feel so fortunate but this diagnosis has changed so many things. I'm just looking forward to getting back to some normality!

Oooh valentines day- I feel like my poor boyfriend deserves a nice treat for putting up with me!

J

x

People keep telling me to take it one step at a time, but I'm finding that difficult. Maybe things will get a bit easier after the op.

I think it’s probably difficult to take one step at a time given the change in surgery and your original op being cancelled - but see that as a good thing! Someone ‘up there’ is looking after you and I truly believe if you’re meant to be a mum you will be whether it be this year. next year or in 5 years time!

Sometimes I have days where I worry that it might come back but then I think, 1 in 3 people get cancer at some point in their lives - there is no point living life with the ‘what if?’ way of thinking, we just have to live for now and appreciate it! Taking things one step at a time is a little difficult because right now you just want it all to be over with so that you can concentrate on getting back to normal but just know that every step is one step nearer to getting yourself back to full health again and make sure that you mentally fully process each step before moving on…your mental wellbeing is just as important as your physical wellbeing!

I guess you will have to decide what you do about your masters when you’ve been given your all clear - sometimes it’s best to make decisions once you dont have the pressure of going to the hospital regularly and have the stress of ‘getting better’. I think I panicked so much when first diagnosed that I said to my boyfriend as soon as I could, I wanted to try to have a baby - it was almost a relief when my consultant said to wait 2 years to try to conceive as I still have so much I want to do before babies and in hindsight it would have been a huge pressure on him too!

What masters course did you take up? I definitely feel as if I would be very interested in going back to uni now and studying something medical! xxx

Good words of wisdom :) thank you! I definitley feel like someone has had my back through this.

It was an MSc in Speech and Language Therapy- I'd worked so hard to get onto the course that it seemed like an extra kick to have to stop. It's difficult to not think about if/when I'll get back to it but I do think I need to give myself a break from stressing about the future. At least for now anyway!

What would you be interested in studying? I think that sounds like a great idea :)

J

x

Well at the moment I do fashion recruitment! but perhaps nursing or midwifery? I guess I should do some work experience to see if its the right choice! Don't want to jump into something and then worry it's not been the right choice!

How are you feeling about your surgery? xx