Hi all I was diagnosed with OC the middle of August & I’m now booked to go into the Royal Marsden, Fulham for this Weds 29th to have a hysterectomy & a 7cms mass removed plus some lymph nodes. I was completely shocked on hearing the diagnosis because all along I’d been told I had a fibroid so OC never occurred to me at all.
I must admit I’m rather terrified at the thought of the surgery but know there’s no other solution so I’m trying to stay strong & positive. I did look up info on google but realised very quickly it was just too negative for me so it’s lovely to be able to in touch with others who are going through a similar experience to myself.
Hi, the way i see it is that an operation is step forward in getting things sorted. Please dont be afraid of the operation, Royal Marsden is one if the best hospitals so you will be in very good hands. Have you been told if you will undergo chemo too? 🥰
Yes chemo was mentioned after my op & I’m holding onto two positives when I was first told the news is that my lump/mass hadn’t grown in size & my blood test came back normal. But of course I realise things can change but it’s helped me get through these past couple of weeks to hold onto the two bits of good news.
I’ve been very surprised on talking to friends how many people have had ovarian problems, it seems to be very common.
Yes it appears to be more common than i thought and i supposed until you are in this position you don't talk about it or read about it . just hold on to positive thoughts and don't let the negative creep into you, you need all energy you need to go through the op which im sure will be just fine. 🥰
Thank you Annie I had a bit of a meltdown on Tuesday because the it was the realisation that my operation is just a week away but now I’ve got over that & feeling that there’s no alternative so let’s get on with it!
HelloI agree that the op is a step on the way to getting sorted. I had mine after 4 chemos but I have to say it was much easier than I had anticipated. It is counterintuitive to rock up feeling well in order to have an operation which is guaranteed to make you feel sore and delicate. I was shaking as they prepped me but woke without pain and asking for tea and toast!
I hope you have a smooth run and everything goes well xx
Thank you Lyndy I think it’s the thought of the operation that lies ahead which I’m finding daunting but I look forward to not having anymore pain & feeling very uncomfortable with my bloated stomach. I look forward to waking up with tea & toast! Xx
The op is scary for you (especially if you've never had surgery before) but routine for the staff. You're in expert hands, and if you tell them you're nervous, they won't be surprised, but they will be reassuring. Take all the pain relief offered at the beginning and don't start tapering it off for 48-72 hours. You will be fine!
Thank you so much for your reassuring words yes I’ll definitely take pain relief when offered after the operation. I’m getting to the point where I’ll be glad to not have anymore pain so the op in many ways can’t come soon enough now.
Hi London777I wish you good luck for your op i have had my original op almost 8 years ago but i still remember being scared, i was asked by a lovely (and very young 😂) trainee doctor if he could examine me once i was under as i had a mass similar size to yours. I agreed as i thought if it helps others to recognise this disease then definitely! The others will advise more on what to take with you but my list was my music and earphones which helped me to relax and drown out the ward noise. A lip balm as the air is very dry and a pillow of my own. A soft pillow which i used to put in my back then lean onto it to get comfortable like a wedge. Its also useful for coming home to put under the seatbelt, and to cuddle when you cough or sneeze- it becomes your best friend for a couple of weeks 😂😂
Use these few days to get your house sorted, freezer full and a few ready meals if needed, rest and recuperation are on the cards and hopefully someone to spoil you a little. Accept help when offered- something i am used to giving rather than receiving! And after if you have a lot of visitors then build in rest periods which are not negotiable xxx
Thank you soo much Betty I’ve just got home after having a blood test, covid test & an ECG at the Marsden & collected my sachets of carbohydrate food sachets to start taking on Tues evening before I go in on Weds. It’s all seeming very real now but in many ways I’ll be glad to get the operation over with now.
I have to admit it did blow my mind at first, but its necessary and for you it will all soon be over and yes your sore for a few days. But the wonderful nurses make sure your not in any pain. I had a hysterectomy nearly 30 years ago. But hadnt had my ovaries out because l was young big mistake. So l had to have the de bulking op which is quite major but l was absolutely fine thank goodness. Then combo of chemo again it drained me but it was worth it l have been no evidence of disease ever since NED please dontGoogle things it ends up. frightening the pants off you. I just get on with life now and enjoy.
There is life after cancer my darling husband proved it. And lm trying to do the same, things are getting better all the time. I am doing the 100
Mile walk next month for Breast cancer research
Our daughter in laws recently been diagnosed
Might help me to get a few lockdown pounds off
whilst on holiday. So lots too look forward to . Good luck with your Op soon be over. Sending love & hugs SheilaFxxx
Thank you soo much Sheila for your positive words yes I learnt very quickly not to google information about OC & am much happier for not knowing too much especially anything negative. I have a new grandchild due on 2.2.2022 (certainly a date I can’t forget) so a lot to live for & look forward to so I know a positive attitude will help me get through this.
It’s so reassuring talking to other people who have gone through the same or a similar experience as it helps not to feel alone when dealing with this. X
Absolutely and congratulations wonderful news for you and your family, all the more reason to get well very soon, lots of love & cuddles for the new baby. Good luck with everything stay positive & keep reading all the positive posts on here. Lots of love for a speeding recovery small steps at first. SheilaFxxx
Hi , I'm very new to this too.... I still feel like a deer in headlights, I had my major op on the 9th August (stage 4) . My lovely consultant said to me "when you wake up you'll be free of disease" that really made me feel so good , so I actually went in feeling quite excited (weird, I know) I was in for 8 days , but was looked after really well. Buy yourself some briefs the Bridget Jones type 1 size larger than you are) also , get yourself an extra long mobile charger and lip balm. I named my cancer and all my friends also called it by this name , my surgeon said it was a very valid name .... C*nty Mac F*CK Face also known as Cumffa .... Welcome to steal it.
Ha ha that’s a brilliant name to call the cancer I love ❤️ it. My sister calls it “my intruder” which in many ways is what it is so I’ll be glad to say goodbye to my intruder on Weds! X
Good luck with your op. You'll feel so much better when you've lost the bloating. Had mine end July and feeling good with lots of energy and back walking regularly. Others have made good suggestions re: things to take into hospital. Can I add elasticated waist trousers to the list for when you're home? I couldn't bear anything pressing on my tummy for weeks and just wanted comfort. M&S do some fab jersey ones for £15 that are so comfortable. Recommend the ankle skimmer slim leg.
Thank you so much for your suggestions like yourself I can’t bear to wear anything tight around my waist so have been wearing leggings or cotton elasticated waist leggings (especially as it’s been so warm recently) but comfort is the key thing definitely 👍🏻.
It’s good to hear that you’ve got your energy back since your op at the end of July there’s so much to live for after getting over the hurdle of the op so looking forward to reaching that stage & getting my life back again. X
Hi London777, I am being treated at the Marsden and had my operation there at the end of April this year. They were brilliant and talked me through everything. They are a centre of excellence so great place to have the work done. The nurses on the ward after the op were lovely too. The main problem I had after op was incredible wind I found hard to pass but with moving about and gently moving knees from side to side when lying on bed it went 😊. A lady here told me to take a long cable charger for my phone that was a great idea. Wishing you well your in safe hands Mish 👍🤗
Thank you soo much for your good advice & I must admit I know we’re lucky (in a strange way) to be having or you’ve already had your op at the Marsden, a world renowned hospital.
I’ll definitely make sure I take in my mobile plus charger, very important as it gives contact with the outside world especially as visitors aren’t allowed in at the moment. X
HiLike yourself I was diagnosed with OC in Dec 2020 and had 2 operations one in Jan and last in May 2021 and like yourself was scared as had no operations previously or been in hospital except to have my children over 45 years ago.
I had days when I was positive and others when I just wanted to cry.
I am now going to do some outreach work with Macmillan in Oct/Nov regarding cancer focusing on OC.
There are lots of help and support via Ovacome and Target Ovarian cancer helpline just to talk and for reassurance.
There are lots of ladies who will be able to give you advice who have gone through these similar experiences who have posted via this forum.
Hope everything goes well on Wednesday and you are on your way back to full recovery.
Thank you so much Lynne yes I’ve found it very reassuring just talking with others who have gone through a similar experience to mine via this page it makes me feel less alone in dealing with OC.
I have an extra incentive to get better as we have a first grandchild due on 2.2.2022 so I definitely want to be around to enjoy him/her so in many ways will be glad to have the op now. X
Wishing you a speedy recovery and nice to have a new grandchild to look forward to next year.Remember to rest and look after yourself in the next few months and always know there is always someone to talk to when you need any help or reassurance.
Lynne
Thank you so much Lynne your good wishes are very much appreciated & very true the recovery period is just as important. Do they advise a 6 week recovery period? X
With my surgery (I'm 43) I was recommended 6-8 weeks . I felt Ok-ish after a month but am now 7 weeks post op and am still fairly restricted in what I can do. I was cut from breast bone to pubic bone so quite a lot of healing.
Oh you poor thing that sounds a big incision no wonder it’s taking time to heal, take it easy & best wishes for a full recovery xx
Just wanted to add my good wishes for a speedy recovery . It's a step forward and a big relief to get it over . I had my surgery at Jefferson University hospital in Philadelphia USA . The staff are so well trained and compassionate, you'll be fine . My surgeon even sat with me whilst I was being prepared, they ran a tube into my spine to run pain meds .
I was out of bed the next day walking the corridor with a nurse . My surgery was on a Wednesday, as well , and I was discharged on Friday and sitting by the pool on Saturday. I was stapled and they did pull and itch , as I healed , I found sitting up from lying down was the most uncomfortable and we angled the back of a chair next to the bed that I could grab on to .
You WILL be fine !! You have much to look forward to . The best of wishes to you for a speedy recovery .
Thank you very much Gill it sounds as if your recovery went well & I think the nurses get you walking around fairly soon after your operation I suppose it’s all about keeping the circulation going & to prevent blood clots. How long ago was your op in Philadelphia? X
I think it was about 2 hrs ,. I actually started coming around on the table by a shoulder shake from a nurse . She said " its all over and your off to recovery ." My surgeon came over and said it went well .
The only problem they had was raising my body temperature. They don't come around with cups of tea !!
My family got a bit upset when I didn't arrive for half an hour . After that , things progressed well .
You may get a bit constipated, but they sent me home with fibre tablets ,, I found milk of magnesia worked better . Again , good luck , you will be fine !!
Hope that it's all over and that alone brings you peace of mind . I was thinking of you when I awoke this morning and sending you best wishes . This is one step behind you !! Have a quick and speedy recovery . BRIT Strong !!
Hi! Like many of the other ladies here, I, too was very scared! But, honestly, there's no need! You'll be in experienced and kind hands and the anticipation is the worst bit. It was my first ever surgery and I was tachycardic in the anaesthetic room as I was so terrified. So they gave me a sedative and the anaesthetists were so kind. Next thing I knew I woke up and it was all done. They'll make sure you stay pain free and you'll be surprised how quickly you'll be back on your feet. I know it's easy for me to talk after the fact but, seriously, you'll be fine, and what's more to the point, you'll be rid of it!
Thank you & yes the most important thing is to be rid of the lump asap & will be glad afterwards to not have anymore pain. We’re stronger than we think. Xx
I have nothing to add to all the good advice already posted here except my good wishes. The nurses took excellent care of me, and when I returned home my family waited on me until I was ready--and eager-- to get up and take care of myself again. Good luck with your recovery. It's scary to think about, but I'm sure you'll feel relieved once it's done. --Lani
Thanks very much for your good wishes I feel in a much better place than I did last week & feeling more positive. Xx
Hi, when I was told about the huge masses on my ovaries and a CA125 of over 2000, I couldn’t wait to have the operation and get it all out. You will be on a morphine pump when you come out of surgery so just press it if you’re in pain, you can’t overdose. As the others have said just look after yourself or get others to do it 😁 as I did. Positivity is one of the best medicines 🥰
We all have had at least one surgery. Plus chemos. It's doable. This has become a terminal disease that can hang around a long time. There are women on this site who have had multiple rounds of chemo and are still here several years later. When they do the surgery make sure to ask for complete genome screen when they biopsy as there are specific drugs for specific genes. For instance if you are BRCA or HDR+. Hugs from paris
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