Looking for tips, help , support etc: Hi all , so... - My Ovacome

My Ovacome

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Looking for tips, help , support etc

Woolls profile image
37 Replies

Hi all , so I’m quite recently diagnosed , around 4 weeks , feel like I’m in a whirlwind while being on a rollercoaster !! I’m going in for an op on Tuesday for a mass removal and full hysterectomy. Iv never had an op before and all aspects are petrifying me ( along with the diagnosis) from being put to sleep to waking up to recovery to the actual op! Iv had to be given beta blockers to lower my pulse rate because of the anxiety , iv got 3 children still quite young so I know I have to do this for them but part of me wants to run for the hills , is all this normal? Can anyone share some positivity or tips that will help recovery or what I need to take in with me that I may of forgotten, I’m in England xx TIA

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Woolls
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37 Replies
Tezzaa66 profile image
Tezzaa66

I think everyone feels the same way I know I did but staff are lovely there was loads of support in the hospital and they answered the silliest of my questions . Just go with it try to chill a bit hard I know but you will feel better 6 weeks after having everything removed I was back doing light housework and carrying on with life as much as I couldGood luck xx

Woolls profile image
Woolls in reply to Tezzaa66

Thank you hun x

Saintgermain profile image
Saintgermain

Hi WoollsThis is all normal I had my hysterectomy last April and felt like you I was only in the hospital once when I was 5 years old I’m 62! I had a full hysterectomy like your having you’ll be put under I had very minimal pain but if you do even in recovery ask for something stronger I got my self out of bed the next morning was walking your young when I got home walked up and down stairs. It’s very overwhelming but this is a wonderful site I’m in the states this is my go to. Try not to over read things on the net statistics especially they are 10 years old. Please please let us know how your doing. Sending hugs from Chicago

Woolls profile image
Woolls in reply to Saintgermain

Thank you so much xxx

Katmal-UK profile image
Katmal-UK

Hi. What you are feeling is perfectly normal. I was diagnosed stage 3 OC nearly 15 years ago at 48 and as ‘weird’ as this might sound I actually got in my car and drove, and drove and drove until I realised I couldn’t outrun what was happening to me. I hadn’t had such an op before (prev was tonsils out at age 10) but fear of the unknown is what is driving the way you are feeling. Trust me I’m a wimp and it was nowhere as bad as I had imagined! Tip for when you are on the way home (believe me that will happen quicker than you think) take a pillow for your lap so that your tummy is cushioned from the seatbelt. You really will be ok and home with your children getting lots of care. Oh and btw, be selfish, accept any help so that you can back in your feet sooner xx All the best, do let us know how you get on xx Kathy xx

Woolls profile image
Woolls in reply to Katmal-UK

Thank you for sharing your positive experience, I get the driving and driving thing it does make you feel like doing that , ok thanks for the pillow tip I’ll remember that xx

Fluffyjumper profile image
Fluffyjumper

Hi Woolls

I had my op in December. I was in hospital 4 days. I hadn’t had an operation with general anaesthetic since I was 11 and was really anxious. I didn’t even know how to put on the anti embolism socks and had to look at other people’s feet to see if I’d done it right.

Take a nightie to wear in hospital, plenty of hair ties, some nice snacks, skincare and hand cream. I had minimal pain, and only took 3 painkillers after I got home. Plan for after your op- have nice meals in the freezer, a book to read, box sets to watch, books to read with the kids, board games to play with the kids. Accept any help you need as you’ll get tired easily. I had a nap each afternoon. However, it’s also important to be active. I was up and down the stairs the day and got home and walking around the house and garden. I was going for 15 minute walks outside within a week and 30-45 minute walks in a fortnight. Wear comfortable clothes- I bought stretchy waistband yoga pants and pull on sports bras to wear.

Woolls profile image
Woolls in reply to Fluffyjumper

Thank you so much ! Fab practical tips and some id not even thought of , iv not even thought about a sports bra. Xx

Trickysite profile image
Trickysite

When you look back a couple of weeks after the op, you will realise that the fear and the shock were worse than the physical side of things. It is a lot to digest emotionally so it is not surprising you are in a whirl. So many ladies on this site have been through the op and with these lovely ladies you will never walk alone.

Woolls profile image
Woolls in reply to Trickysite

Thank you that’s just what I needed to hear about the fear and shock being bigger. I totally agree the ladies on this site have already given me so much support and eased my mind xxx

Realistic profile image
Realistic

You've had a big shock to our system, we all have on here but we help on another and honestly its not half has bad as you think.Ive had do many operations not all to do with

Ovarion cancer. But although the de bulking operation is a big operation l recovered really quickly the advice lve read from all my teal sisters is sound. You'll be ok , lm doing fine

Had my de bulking in 2017 then a nodule off bowels in 2019 then 6 months chemo not nice.

But necessary but it did the trick and have been

NED ever since. Ive got a referral on the 16thMay. Walked 152 miles in Oct for cancer research so l reckon l can say there's light at the end of the tunnel see a surgeon on the 16thMay for Hernia so think positive, pamper yourself you'll be ok . And never think you can't do that try and if you can't that ok you tried.

Love & hugs SheilaFxxx

Woolls profile image
Woolls in reply to Realistic

Thank you for such a positive reply it really helps to hear others positive experiences, can tell you’re very positive, any tips for the healing and recovery period ? Xx

Realistic profile image
Realistic in reply to Woolls

Were all different l heal very quickly lm really lucky . Do as your told l don't but l don't like being restricted. And like to get on with my life as soon as l can not always possible if your not well, but l honestly was fine sore but fine.Think the tip from one of our teal sisters about pillow in the car so sensible seat belt hurts.

Too uncomfortable to sleep on my side like l normally did so extra pillow around you in bed to keep you propped and loose comfortable clothes nothing clingy. Nothing close on your waist. Plenty to read. Eat even if you don't feel like it all helps you to recover. And stay positive you can live a normal life. Do not look things up on the Internet it frightening most of the time your in contact with woman on here that have actually been through it and really know how you feel. God bless love & hugs SheilaFxxx

Lyndy profile image
Lyndy

Hi WoollsI was really surprised how quickly I felt better after surgery but this meant I had to stop myself getting up and doing the hoovering or going for a long walk.

You will have a long vertical scar, which may be held together with staples (which is slightly weird). It will heal in stages, so some of it may be fine after 10 days, stubborn bits may take weeks. Just go very easy, even if you feel good. In the early weeks do give in to a snooze during the day… it’s your body’s way of shutting you down so that it can get on with healing. xx

Woolls profile image
Woolls in reply to Lyndy

Thank you, some good tips for after thanks , can I ask when do the staples get removed? Xx

Lyndy profile image
Lyndy in reply to Woolls

I think it’s 12-14 days from memory x

Woolls profile image
Woolls in reply to Lyndy

Thank you x

Tezzaa66 profile image
Tezzaa66 in reply to Woolls

I didnt have staples I had disolvable stitches but they just disolved over the month after x

Willowsmum51 profile image
Willowsmum51

Oh bless you Woolls. I was exactly the same when I was diagnosed back in September last year. I really struggled, my anxiety was through the roof and I felt like I was spiralling into a black hole. My Dr prescribed me Mirtazapine to help which I take at night time so they help me sleep too without feeling groggy the next day. It’s such an awful shock, it’s so scary. All I can say speaking from my own experience is that we are stronger than we think and somehow we do manage to cope, I’m stage 4 and incurable and I won’t say that I still have my days where I’m terrified but six months on I do feel I have more good days than bad. I had debulking surgery in January, I must admit I didn’t bounce back quite as quickly as I thought I would, so be kind to yourself, take any help that’s offered to you and ask for help if it’s not offered. Take each day as it comes, I’ve found this forum really helpful, so many stories of hope which is what we need! I also followed a few ladies in our situation on Instagram and find those helpful too.

Wishing you all the very best with your surgery, you will be scared it’s normal, but once it’s done and you start to recover you’ll be glad you’ve had it done. Xxx

Woolls profile image
Woolls in reply to Willowsmum51

Thank you, yes also now on meds for anxiety , just need to make sure I can take them on the morning of my op as I have to drink bowel prep and says no meds by mouth which I’m hoping I can to calm myself , thank you for your response sending much love xxx

thejoannabell profile image
thejoannabell in reply to Woolls

Usually before surgery, meds with a tiny sip of water are ok. Just check with your doctor and tell them what you have taken. Once you are in for the surgery the staff are usually very sweet, and once they give you the first dose of medication before they take you in, you’ll be in lalaland. I was offered a chaplain to pray with me beforehand and even though I am not religious I found that comforting. When you wake up you’ll still be sleepy for a while from the anesthesia, and if you are having pain they’ll do their best to keep you comfortable. Bring earplugs and/or headphones with music for after, and a sleep mask. Staff tend to be in and out every couple of hours so that may help you get some sleep. Best of luck to you, and as others have said, the worry beforehand will likely be the worst part.

Joanne59 profile image
Joanne59

We all feel the same before a big op, I felt tired for a few weeks and had regular day naps. I sorted out a cleaner to come for 3months once a week which was great help.Fill your freezer and cupboards. Let family and friends help. Good luck, deep breaths! X 😘

Woolls profile image
Woolls in reply to Joanne59

Thank you lovely , strange I’m a way that’s it’s comforting that others felt the same as I am now , makes you feel not on your own xx

Mammi profile image
Mammi

Well was about to reply then saw all these fantastic snippets of advise🤗Don’t Google, just go through people you feel you connect with on this forum, they are real! Just another snippet, you will be told to drink lots of water & that is for a good reason! Not always easy if your feeling a bit sick or full but it is so important to get everything working inside you. Don’t be afraid it’s no way near as bad as you think , you’ll be in safe hands ! Sending big hugs DeeX

Woolls profile image
Woolls in reply to Mammi

I know everyone is so kind on here and like you say it’s good to talk to real people with experience, is that lots of water after or before? Xx thank you xx

Mammi profile image
Mammi in reply to Woolls

After the operation!X

susiemarmite profile image
susiemarmite

Hi wools. I’m in london. Operations are fine. Enjoy the drugs that send you to sleep. Op will be fine. Don’t worry. We are all here with you every step of the way.

Woolls profile image
Woolls in reply to susiemarmite

Thank you xx

Mommoo65 profile image
Mommoo65

Hi Woolls! I understand your anxiety. I quelled mine by looking at the operation as a sort of adventure since I hadn’t even been in a hospital for 30+ years! I was so curious about everything. All great advice from our teal ladies! I was in the hospital 10 days due to some other issues and all I can add is have friends or family sneak in some milkshakes!

I was on a liquid diet and-trust me-broth and jello get old!

I also recommend a sleep mask and ear plugs as hospitals are noisy 24/7!

Good luck and I’ll be thinking of you!

By the way, my operation was 7 years ago. We got this! Hugs, Jill

Woolls profile image
Woolls

Thank you so much xx

Tulips66 profile image
Tulips66

Hi Woolls, I see you have had plenty of replies & great advice from all the ladies on here. A nurse told me to bring in a drinking bottle with a built in straw & I found it great because for awhile after the op you are only allowed have little sips of water & your mouth always seems to be dry after the anaesthetic. Lip balm, earphones & maybe ear plugs because it's hard to sleep at night with lots going on in the wards. After you come home don't stress too much if your house is untidy it will still be there when you feel better 😉 Short walks outside everyday & build your strength over time. Best of luck with the op & like the rest of us you will get through it & then wonder in a few months why you had yourself so wound up Xx

Woolls profile image
Woolls

Ok that’s useful to know thank you xx

Twink333 profile image
Twink333

Hi and good luck. It does steam roller along and you suddenly find yourself in this completely strange world. It's a huge learning curve and an emotional overload, but I found waiting for the op far worse than the recovery. My top tips.....extra long phone charger as the socket can be behind the bed and flip flops to wear in the hospital and bin when leaving it. They're handy for going in and out of the bathroom.

Woolls profile image
Woolls

Thank you xx

OvacomeSupport profile image
OvacomeSupportPartnerMy Ovacome Team

Hi there Woolls

Thank you for your post. I’m really sorry to hear how worried you have been feeling but am glad to see you’ve had lots of supportive responses from the forum community. I wanted to share this Ovacome blog post with you: ovacome.org.uk/blog/what-to... . This list was written by one of our members to help prepare for a hospital stay and I hope this may be useful for you.

I hope your upcoming operation goes as smoothly as possible. If you would ever like to talk things through with a member of our support team, please don’t hesitate to get in touch with us. You can call our support line on 0800 008 7054, email us via support@ovacome.org.uk or communicate via instant message on our website. We can also schedule 1-to1 video calls via Zoom or Skype if you prefer: ovacome.org.uk/forms/1-to-1... . We’re here to support you Monday – Friday, 10am – 5pm. We can discuss questions you may have, provide information and relevant resources, or just have a friendly chat.

Best wishes

Annie – Ovacome support

Woolls profile image
Woolls in reply to OvacomeSupport

Thank you so much xx

Hi Woolls. Sending love.

I'm 43 with three children (8, 9 and 14). I had two surgeries recently . 1 emergency at the end of December and one planned, to finish the job beginning of March. I'm stage 1c2 (though I have one letter that says 1c3. Choosing the lower one 😁). My chemo starts Thursday and I'm trying to mentally prepare.

I wanted to echo what the others have said. The NHS staff know their stuff. They'll likely offer you an epidural which I'd recommend. I wasn't given the choice for the emergency op but pain and general recovery were better after the second op.

I've also started my Macmillan counselling (6 free sessions) recommended by my Macmillan nurse. Worth checking out.

Lisa

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