Surgery - hints, tips, help, re-assurance all gratefully accepted

Hi Jaybeth,

Really glad you have a date for your surgery - and as you say, having it at short notice gives you less time to panic....

....But it wouldn’t be normal not to panic, so don’t be hard on yourself for that !

I had my ovarian tumour removed on December 23rd, also with frozen section, and almost certain (with a CA 125 of 400+) that it wasn’t benign.

I was under anaesthetic for about 6 hours in total, and found I felt surprisingly much calmer on the day than I expected (despite having to go in alone due to Covid). Maybe because I knew there really was no other way, and mainly I think because I felt that, after weeks of waiting and wondering if things were getting worse inside me, I was moving onto a new phase, where there would be certainty and a firm plan for me.

Although the tests during frozen section aren’t quite as accurate as the full biopsy taken later, they do allow for steps to be taken that would otherwise require another op (and more delays!). In my case, it allowed the surgeon to remove the tumour, surrounding tissue it had attached to, and to carry out a full hysterectomy - quite confident that she had got all visible signs of cancer out.

Post surgery, I’d recommend just take it one day at a time.....for the first couple of days my legs were numb from the pre-op spinal epidural (bit scary, but in case you have this too, don’t worry - it wears off when they switch off the epidural pain meds). I can honestly say pain wasn’t a big problem post-op (although having the morphine button there just in case, and particularly to get to sleep, was a comfort).

Constipation (which I think we’re all very familiar with on this journey) was a problem until I was able to get out of bed and move around a bit - for me, day 3. That’s also a big turning point because the catheta comes out and you get a bit of independence back. Another tip - make sure they give you a rolled up towel or blanket to hold against your tummy scar whenever you feel the need to cough or “try a bit harder” to get your bowel working, as otherwise this can be very sore.

I think most people spend 5-8 days in hospital post-op, and think they’ll get a few books read or other things done in this time. Personally, I found couldn’t focus on anything for long, so mags were better than a book, and my mobile phone and an extra long charging lead (very cheap on Amazon) were essential.

It’s really good to hear you talk so positively about your medical team, surgeon etc, as this will help you follow them on whatever journey they map out for you post-surgery.

I really hope your surgery goes well - be thinking of you, and hope to read an update from you soon.

Lots of love Bxxx

Hi jaybeth I had my surgery on 30th March and am now home. I had a full hysterectomy and have my follow up on 22 April . I did see the surgeon after the operation but I can’t really remember what he said so am still not sure what follow up treatment I will have. 
the day of the operation was quick, I arrived at the hospital at 7am and joined a queue of others waiting to go in but I was scheduled first so did not have long to wait. 
I wasn’t brilliant in post op feeling desperate for water but once on the ward I was given oxygen which is really calming. I did have a lot of pain but the nurses were brilliant with Pain management. I had a morphine button and  although I tried not to use this because it totally put me out on reflection I would of definitely used it more for the first 2 days. I was also offered oral morphine and other pain killers.  It is not very comfortable to move if you have a full hysterectomy, to me it felt like being in a straight jacket but if they can do it by camera surgery it is much better. My 
Blood  pressure and temperature was taken at least every two hours initially but as I got  better it went to 4 hourly so the care and attention from the nurses is  brilliant. I awoke with several tubes, a catheter and a cánula in each hand 

constipation is normal but now home that has regularised and it was not painful. My operation was on Tuesday morning and Thursday I came home . If you go home that quick you will definitely need help at home . The first few days at home I was still in quite a bit of pain and had to be careful not to take the Paracetamol too soon but everyday does get better. I have now been home  a week and my 33 stitches were removed yesterday and I had my first shower today which was fantastic. What ever I read beforehand of the facts I’m sure I could never have prepared myself for the total rollercoaster and now there is further waiting until 22 April, but in reality I am prepared that I will need follow up chemo. 
I have had several tears both alone and with my husband but I do have confidence in the NHS and the treatment I am getting . Having the surgery and getting the job done is so much better than the constant waiting. Good luck with your operation. 
If you have any specific concerns don’t hesitate to just message me .

suex 

Hi Jaybeth,

yes , of course your anxious and it’s ok to be, but you know it has to be done and a sense of calm will come in to play and the complete panicky feelings will become less. I had a large pelvic mass  around 17 x 9 and on the approach the consultant was definitely suspicious of ovarian cancer but biopsy was unclear, my CA125 was 35, so borderline.... all I was sure of was that it had to be out regardless of what was to come next.

So the actual run up was organised, COVID test 3 days before and early in at 7am, once you are in the nurses really take over and will make you feel at ease and guide you through some admin and get you ready. You will put some “attractive compression stockings on” and speak to the. anaesthetist and you walk down to surgery.  They talk to you all the time and your asleep very quickly. Post surgery for me was really ok, I woke up and attached to drip for morphine which you control the amount, I didn’t use it that much so they took it away after a day, it does make you groggy so I used paracetamol and ibuprofen and could manage quite well. You have a catheter in and have that taken out the next day, which isn’t painful. You have to pee three times so they can measure your output, so drink lots and eat as this helps to get your bowel moving. So op day is day 1, by day 3.. the wind pains come through and this was more painful than the op pain... drink peppermint tea and move around ...walk up and down the ward, rock backwards and forwards at the end of bed...it will help.

I was out of hospital on day 3, i just wanted to be home... I was constipated but took medicine home with me for that..  you will be very slow and stiff.

if you have help at home or can arrange some I would say organise that, as rest in the early days will make you recover quicker long term.

So items to take in to hospital, phone and long lead charger, peppermints and mint tea for the wind pains. 2/3 nighties/ wet wipes.. 

I was very confident in my medical team and my nurses were very helpful and caring, talked me through the blood thinning injections which I had to do for 26 days after operation. It’s not easy for the first week but the pain can be controlled and with rest you will feel better after the first week.

Try to just accept that there is a plan for you and the operation is just part of that plan to make you well.. eat as well as you can pre and post operation..lots of fruit and protein to repair your body.

I hope my ramblings have helped you, Chicago and b.positive give great advice... you will have good days and days where it’s a bit overwhelming but that’s ok to feel upset , I send you my very best wishes and will look for your updates

xxSue

Hi becalm Great tips and advice there, with more bits of information. Have you started your chemo as that is my next step and am really anxious. How is it going ? Any advice for me ? 

Hi CHicago Sue,

yes lovely I have, so op was Dec 17 and started chemo Feb 17. I am having 6 sessions of carboplatin and plaxitol every 3 weeks.

Yes I was more anxious/ scared of chemo than the hysterectomy and was right up to the first session... fear of the unknown was very real for me... 

Firstly obviously just a huge hug to you, I know what it feels like to be catapulted into unknown scenarios, but knowledge is power and that is what the next meetings and appointments you have are about.

First meeting with your oncologist may be different to mine but at my first appt,  I met my doctor, who was lovely, he took me through the scans and MRI scans to show me exactly what the surgeon had done, explained there was a small hole in my mass and I was to have 6 sessions of chemo every 21 days. He asked me if I was physically ok after hysterectomy and. he went through all the drugs I would be given and the side effects...there are an awful lot of boxes to tick but I have to stress they don’t all happen and he was quite open about what he thought I would experience and what I wouldn’t.

so that was January 26, lasted about 45 mins, then was popped outside to wait for appt for the pre assessment appt which is with an oncology nurse.

The pre assessment appt was on February 11, so 2  weeks later. Anyways at this one , very through medical history taken, asked about allergies, took bloods,COVID test, Blood pressure and weight recorded, ask about lifestyle, if your eating,sleeping, exercise...just to see how well you are in yourself.....lasted about 1 hour.

dates given for first chemo session, Feb 17...so just under a week later.

My chemo is Wednesday every 3 weeks, ..once you get started on chemo you go to have your bloods checked 2 days before your next session so it’s Mondays for me every 3 weeks. 

I would say the fear of chemo is real, I found the period between diagnosis and starting chemo, stressful..I was basically scared, I didn’t know what to expect, there was a lot of tears. I reacted ok thankfully to session 1 and had about 4 days of being groggy and tired but picked up quite quickly.. and in the following period was bouncing around the house, buzzing in fact. So it’s not all doom and gloom, of course you will have good and not so good days as you go on.

oncologist said stick to the lockdown rules, try to avoid supermarkets at peak times, avoid people who have colds or are unwell but to go out for exercise and do whatever you can do to be safe...hand sanitizer/ masks

The anti sickness drugs are really effective , first chemo I had the anti sickness through the drip, but on second session , I took a tablet. They give me 3 further tablets to take on evening of session, then next morning, following evening. I try to eat as well and snack  as often as I can and I haven’t felt sick. I took the approach of always having something in my tummy and it works for me.

I didn’t feel unwell when you are on the drip, it’s via a cannula in your hand and that can be a bit uncomfortable going in..but the nurse said drink lots of water for 3 days prior to chemo session as it plumps your veins up and easier to get needle in.

My first session was long, they take it slow to make sure you don’t have a reaction to any of the drugs, first chemo via drip I had antihistamine,steroid, and anti sickness, then 2 chemo  drugs with a line flush in between all of these and a final flush for 30 mins, went in at 11:30 cane out at 7pm...

Second chemo yesterday slightly quicker by an hour.

My chemo centre is modern, chairs are in groups of four, both times there have been wonderful ladies willing to share their experiences, and the first session  I crumbled a bit, few tears and they soon got me back on track. I spent most of the time listening to them and got some fantastic tips from them.

Volunteers bring around tea, sandwiches, crisps and fruit so they feed you as well.

I keep a chemo diary now ..so I’m expecting to feel groggy and achy on the following Friday and over weekend, from Monday I pick up and feel ok...

My oncologist saw me a week before my second session to make sure I was ok, what I had experienced in case he needed to tweak the doses.. answer any questions I had ....so you are monitored all the time and I have a number to call if I need to speak to an expert out of hours, so that’s comforting.

chemo #3 I had a bit of sickness and achy legs and very tired ....lasted again from Friday night to Sunday morning, so a pattern does start to emerge.

Write your questions down as they come into your head, so when you visit oncologist you are all prepared 

Have you had a COVID jab yet... if you haven’t ring up GP , tell them you are going to start Chemo and you need a jab two weeks  prior to starting chemo, my surgeon was adamant about this, so I rang my GP on the Tuesday got the jab on Thursday, that was in January, so there is more capacity now so yours should be prioritised.

I suppose the best advice is to try to be in the best physical state you can be eat well, drink lots of water, try to stay active, little walks and try to find some mindful distractions ... a lady suggested knitting/crochet...adult colouring... I have been using the sewing machine a lot as it needs focus...others read... whatever you enjoy.

I hope that’s a start, please keep in touch and let me know how it goes...

big hug

xx Sue

What a lovely lady you are,sharing all this. Big love going your way and hope your sessions go well.I Still have two weeks to get stronger before my appointment but will keep in touch x sue

Thanks B, for all the info, its so useful.  I imagined all kinds of things - like having to get up and walk on the first day - being left alone to get on with it was a big fear!  

I hope your recovery continues well - 

Jaybeth

Thanks Jaybeth, I’m on cycle 4 of chemo now and finding it do-able, although of course some days are not as good as others. I find taking it one day at a time, and pushing myself a little but not too much, is the best way to get through it - a lot like the post-surgery recovery phase really.

I hope your surgery this week goes well - and try not to worry about being pushed to do anything you’re not ready for or being left alone - the nursing and physio teams will be there for you every step of the way, and their experience will tell them what you’re ready (and not ready) for.

All the best, and look forward to hearing how you get on,

Bxx

i had this surgery just 5 weeks ago. its bot easy recovery. Spend 7 days in the hospital and bow at home. Am 59 . If you younger recovery should be faster and easier , also its all very individual. Tomorrow going to hospital to discuss chemo....not looking forward to that. Wish you luck with your operation.Ask more questions if you wish.