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preparing for abdominal hysterectomy

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Cagney
preparing for abdominal hysterectomy

So grateful to FeelTheFear and all the other women who've shared their experience. Some really great tips on this thread

https://www.jostrust.org.uk/forum/cervical-cancer-%E2%80%93-treatment/radical-hysterectomy-11

I have a date now, 30th December, they rang me yesterday, so the hard bit will be missing toasting in the New Year with a whisky. But at least I'll be entering 2021 cancer free, hopefully.

I also found a good leaflet published by the Royal College of Obstetricians and Gynaecologists called Recovering Well: information for you after an abdominal hysterectomy. https://www.rcog.org.uk/globalassets/documents/patients/patient-information-leaflets/recovering-well/abdominal-hysterectomy.pdf - if admins read this maybe you could put the hyperlink in so others can click onto it easily? 

I've ordered a wedge pillow, and a friend has a V pillow she's lending me, and hubby's sorting out an overbed table and I'm going to order some massive pants and lots of tins of prunes. There is a cushtie cushion in the house somewhere which I'll dig out. 

So hopefully some of this will help some others facing a hysterectomy as well, and as for me I'm all set and ready.

Well, I wish I was, I'm terrified. Relieved - the end is in sight, but terrified. It's an absolute roller coaster. Waiting and wondering when it would be was horrible, but knowing it's right after Christmas is also horrible. And the cruel tiny voice deep down saying "what if they find something nasty afterwards?" is horrible too.

 

High grade CIN and CGIN, endocervical adenocarcinoma grade 2 stage 1.

Abdominal hysterectomy BSO 30 Dec 2020.

Cagney

On a lighter note I'll just add - having had two LLETZ under general anaesthesia, I have built up a little stash of surgical stockings and have been making my hubby practice putting them on me. I'd recommend it as a party game. And I'm glad he's learned on me before I'm in pain 🤭

High grade CIN and CGIN, endocervical adenocarcinoma grade 2 stage 1.

Abdominal hysterectomy BSO 30 Dec 2020.

FeelingTheFear

Hi Cagney 

Im glad you found my experience helpful to your preparation and hopefully reassuring also. It sounds like you are doing a great job of taking care of all these practicalities. I was so grateful for my husbands support with things like the socks, getting in and out of bed, and keeping me company on my daily walks as I built my strength back up. 

I really admire your positive proactive attitude, this is a challenge you're facing, but you will soon get through to the other side! Xx

Feb 2020: smear = high grade dyskariosis

March 2020: biopsy = CIN3

April 2020: lletz = cervical cancer stage 1b1 (1b2 on new FIGO)

May 2020: radical hysterectomy and lymphadenectomy. NED!

September 2020: first follow up. NED!

Cagney

Awww thank you FeelingTheFear! How nice of you to say! It's encouraging that you think my attitude is positive - cerainly doesn't feel like it when I'm in a weepy snotty heap feeling like the world has ended! But you're right, I'll get through this like so many before me and probably many more that follow. Hysterectomy is big thing for you individaually but it's pretty routine for the NHS, they know what they're doing.

Had my pre-assessment on Friday - blimey they must have taken half a pint of blood! 5 of those vials full! The nurse who did the 500 page (or so it seems!) questionnaire told me about her own hysterectomy - I was quite worried about getting home afterwards and how I'd get in and out of the car but she was reassuring. So what with all your help and everyone here, and her reassurance, for once I came home and didn't collapse in a soggy heap! I'm not looking forward to it but I am looking forward to it all being behind me! 

Have also tested my wedge pillow - not that comfy under normal conditions, but we'll see how much it's needed. A friend who's an OT suggested that sleeping on your side may be more comfortable after abdominal surgery which is good as I do. 

To anyone else waiting for a hysterectomy - chin up! You're not on your own xxxx

High grade CIN and CGIN, endocervical adenocarcinoma grade 2 stage 1.

Abdominal hysterectomy BSO 30 Dec 2020.

FeelingTheFear

Hello Cagney, 

Of course you will have ups and downs on this rollercoaster but its good to focus on practicalities and how you can make the recovery as smooth as possible, which you're doing a great job of. Agree with the nurse that getting in and out of the car wasn't an issue, as can use your arm and leg strength. It was anything involving leaning backwards or bending forwards at the waist that was a problem for the first few weeks. I'm feeling strong now but trying to do a sit up is still a weird and uncomfortable process. Is it terrible that I just dont bother :-o

I am a side sleeper but for a long while after my surgery, it was unthinkable. Probably a good 4 to 6 weeks, there was no way I could manage on my side, even with a cushtie pillow jammed against my guts. However I think everyone is different because I had read online beforehand that side sleeping is a good option after abdominal surgery, it just wasn't for me. The first night when I got home from hospital we spent over an hour experimenting with different configurations of pillows trying to figure out what worked best, pillows under the knees turned out to be a must have when lying flat! 

You're absolutely right that this surgery is common place for the NHS and is one of the most common surgeries in the US, you will be in good hands, and there are so many others who can share their experience with you, you mustn't feel alone, I dont know what I would have done without Rufus and Lauriebeth my surgery buddies on here :-) 

Take it easy xxx

Feb 2020: smear = high grade dyskariosis

March 2020: biopsy = CIN3

April 2020: lletz = cervical cancer stage 1b1 (1b2 on new FIGO)

May 2020: radical hysterectomy and lymphadenectomy. NED!

September 2020: first follow up. NED!

Cagney

Thanks FeelingTheFear - I feel a lot of things but alone certainly isn't one of them thanks to you and all the fantastic people here! Your insights are really helpful! Thanks xxx

High grade CIN and CGIN, endocervical adenocarcinoma grade 2 stage 1.

Abdominal hysterectomy BSO 30 Dec 2020.

Lydiasm

Hi Cagney, great to hear you have a date. Im also

anxiously awaiting the 30th as that is when I see the oncologist. I will be thinking if uou that day. It sounds like you're well prepared for the op and the recovery afterwards, I wouldn't even think of those things! I have a 10 year old and a 3 year old so the thought of having the hysterectomy fills me wirh dread as there is no way it will be an easy recovery period.

I hope now you've got your date you can try and get your head around it and try and enjoy Christmas (as much as anyone can this year).

 

good luck! 

Abnormal smear 11/11/20 wirh high grade severe cells. Called into hospital same day for LLETZ

6/12/20 MDT meeting confirmed 1a1 cancer found in biopsy 

30/12/20 first oncology appointment.

21/1/21 Second LLETZ Under GA

2/2/21 Biopsy results show no more residual cancer and no more CIN3, all clear margins. Follow up in 6 months! And breathe...

Cagney

Thanks Ashlydia

I'll try and keep everything crossed for you tomorrow! When I'm conscious anyway lol!

Yep. dread is right but last night I decided to stop thinking "I'm frightened" and start thinking "they're taking the cancer away, I'm more frightened of that". Fingers crossed! 

Whatever they tell you, I hope it's the best it can be! If they do  say hysterectomy then you know I and plenty of others here will gladly help out as much as we can with tips and insights and ideas - this is just a moment in time! Even if it lasts a few weeks before you know it it's history and you look back from a safe distance knowing it was the right thing to do. 

High grade CIN and CGIN, endocervical adenocarcinoma grade 2 stage 1.

Abdominal hysterectomy BSO 30 Dec 2020.

Lydiasm

good luck for tomorrow Cagney. I hope you're not feeling too anxious and you get some sleep. 

Looking forward to your updates when you're up and about a bit. I will be thinking of you tomorrow. X

Abnormal smear 11/11/20 wirh high grade severe cells. Called into hospital same day for LLETZ

6/12/20 MDT meeting confirmed 1a1 cancer found in biopsy 

30/12/20 first oncology appointment.

21/1/21 Second LLETZ Under GA

2/2/21 Biopsy results show no more residual cancer and no more CIN3, all clear margins. Follow up in 6 months! And breathe...

Cagney

thanks for this! I'm sorry I didn't see it sooner. It's been a long dark winter! Six weeks practically immobile, but I'm pretty active now. I am walking - slowly - can keep going for 45 minutes. I started back at work on a phased return on Thursday. My employer is great, really supportive and flexible. I've  not heard a peep from the hospital since the op - they were very quick at calling me in following my two LLETZ when they found the cancer. So I hope this is a good sign and means they didn't find anything nasty! 

High grade CIN and CGIN, endocervical adenocarcinoma grade 2 stage 1.

Abdominal hysterectomy BSO 30 Dec 2020.

More Information

Treatments for cervical cancer