Update on my surgery

[Deanna39]

Morning everyone

I had my surgery on 10th June so just over 2 weeks ago. I am emotionally struggling along with the pain I am in.

I am finding it very difficult to even look or touch the incision site, even though the district nurse is saying its healing brilliantly and has no concerns about it.

Surgeon has told me they have removed all my gynecology organs and as much as the cancer as they could safety do but It remains in areas where my uterus was around my large bowl and liver. I always new they would not get it all out. After speaking with my CNS she explained it like someone has sprinkled a pepper pot in my abdomen.

The plan going forward is to watch and wait and hopefully it remains stable for as long as possible I am not eligible for a parp as it is more than 12 weeks since I had my last chemo and until a reaccurrance no my chemo will be offered. I am BRCA negative. I have an appointment with my oncologist on 8th July and I have had a scan recently so they have a baseline moving forward.

I feel I have put myself through a major operation for no or little benefit and I am really struggling mentally.

Xxx

[Mammi]

Hi Deanna 39.Think you’ve hit that 2week block after the operation where we all think what did I put myself through all that for 😱It will prove to be worth it & IF any further cell to grow then it will be much more manageable to control.Iremember looking at my huge incision full of staples with a massive protrusion to one side thinking I will never be that same person again & it took a while but here I am 18 mths after feeling great with the finest scar ever 🤗That will be you so stay strong but be kind to yourself.

Big hugs. Dee X

[Cumbrianlass5]

The pain, and stress of the operation, not to mention the after-effects of the anesthetic will have taken its toll on you. It is early days. Be kind on yourself. In another couple of weeks you will hopefully feel so much better. They have got the bulk of the bloody cancer out, which is wonderful. It might well not recur for years, and any remaining cells could well have been weakened by the chemo. Try to stay as strong and as positive as you can, start living life to the full once the pain subsides and give yourself plenty of little treats. Wishing you a speedy recovery from your operation and many, many happy years ahead x

[KH59 in reply to Cumbrianlass5]

Absolutely agree with you. Your body goes through alot during surgery and does take its toll on your emotional state. Yes, be kind to yourself always. 💕

[SopSinger]

Only two weeks after surgery, it's completely normal to feel overwhelmed. It takes time to heal physically and longer to heal mentally. Physical healing includes the surgical skin scar, which takes a couple of weeks, and if your nurse says it's doing well, trust her. But the internal organs take much longer to settle and you'll need to be patient and rest, rest, rest! However, if there are traces of cancer left, I don't understand why they are not offering you more chemo, and in your shoes I would ask about that and push for further treatment. The scan may indeed show a baseline but I would expect it to lead to further treatment. Hope the appointment on 8th July goes well. Sending hugs!

[RoseMS]

If there are still signs of the cancer surely more treatment is indicated Deanna? Please do ask as many questions as possible at your Onc appointment, perhaps have a written list. There are PARPs for BRCA negative also. And Avastin for maintenance. Please ask all you can.

[Itha]

Hi Deanna, I also felt really down and miserable about 2 weeks after the surgery, wondering if it was worth it. I agree with Cumbrianlass - the anaesthetic plays a HUGE role and takes time to work out of your system. I went for loads of acupuncture and reflexology treatment and still do regular reflexology (no access to acupuncture where I live now). I fond it helped a lot. And, reach out to a trauma councillor. It is difficult for friends and family and as much as they would want to help and support - they don't really know what to do. With specialists help, you can really just let it all out and speak your mind honestly without worrying about the impact on anyone around you. Good luck!

[Realistic]

Hi Deanna,We all feel like you lm sure, 2wks after surgery

And it is major surgery, your bodys takes time to heal l was horrified at the amount of staples l had but within a year it was a very thin line and not a problem in the least one of my many scars.

Yes l remember it was extremely sore at the time and l did get slight infection in the belly button area. I stupidly put up with pain and discomfort but then went to Doctors got treatment cleared it in no time. Ask Doctor if its ok you might just have an infection in the wound.

Keep positive very early days, you'll soon start feeling normal again lm sure . Sending love & hugs SheilaFxxx

[LouieB123]

Hi Deanna39, sorry to hear you are struggling post op, my mum had the surgery the same day as you (she was scheduled for 8th but got changed on the day to 10th). She has had a tough time after surgery too physically and mentally, she ended up being readmitted to hospital too. She is still quite sore around the belly button area. She is now home and making progress each day, as i’m sure you will be too, although I know it won’t always feel like it. Be kind to yourself and REST. Let people look after you. Mum isn’t on this forum but I always tell her she should be, to get support from those who are going through the same thing like yourself. Sending you love, strength and positivity. Laura xxxx

[Itha]

have a look at this: careoncology.com/the-coc-pr...

[SUE7777]

Hi Deanna, I'm really sorry your struggling with pain, they can give you medication for that if you choose. I am in exactly the same position as you. I had a big operation but they didn't get all the disease out, however I think I recovered quickly from the operation. I'm very squeamish and it took quite a while before I could look at the scar. I'm 20 months on from all that and about to start 2nd line chemo. I hope you feel better soon, I have certainly been feeling okay most of the last 20 months and been able to do things. Take care and all the best Sue xx

[Jenjill47]

Hi Deanna. Hugs from Down Under!🐨I know exactly how you feel - I wondered if the surgery was worth it as I knew that all the cancer was not eradicated. I thought the after effects of the surgery were worse than the chemo itself! Now, I have forgotten about that and I'm just getting on with the next chemo that I'm having monthly. Just like Sue777 is.

You will feel the same once you get over the physical effects of the surgery. It can really knock you sideways.

All the best,

Jill

🐨🐨🐨

[MarleyZ]

Hi Deanna sorry to hear that you are still in pain unsure how bad the pain you have is, you should take the normal over the counter meds ie paracetamol, but should definitely be having a conversation with the onocology team and if you have a CNS have a convo with them as well, you should not suffer silently.

I initially had my first operation with tumour removal and deabulking surgery early in 2020 they had staples etc and it's quite horrendous to view let alone touch, I wasn't in any pain, the swcondey operation this year in May was different staples just a very thin cut around the line from previous year to remove a tumour/mass glue and dissolving stitches were used, showered almost immediately having had the operation, I would urge you to contact the onocology team and explain the issues you are having, you should also be able to speak to someone in regards to how you are feeling mentally in regards to the operation itself. I hope it all goes well for you wishing you all the best.

[Tillymint61]

It's so hard to look at the positives when you are still recovering and not feeling well but there are great positives post operatively. I too like you came out of op with them having to leave stuff behind in 4 locations. That was last March. I had my final two chemo's and I am now on Avastin. (A few left still to have) The operation was not a wast of time as you have way less disease than when you started which will allow the ongoing treatment (I'm sure your consultant will discuss this on 8th July) to stand the best chance of doing a good job. All we really want is for it not to be there at all but coming to terms with the limitations may help you as you carry on. For the time being be kind to yourself. Even if that's only for the rest of today. Then maybe try to do the same tomorrow. I tell myself it may not be how I wanted my life to be but it is still 'my life' and I'm going to do my best to try and enjoy it . Sending you a big gentle 🤗 xx

[Ruebacelle]

Why no more chemo? Makes no sense. After I had surgery had chemo plus avastin. After second surgery had carbo plus gemzar...after that didn't work and there were tumors they started me on taxol. Hope you can have someone who an help. Hugs from paris

[Deanna39 in reply to Ruebacelle]

They have said no more chemo until I have a recurrence as I had my surgery after I had had 6 rounds of chemo due to having a PE after my third round and the Parp needs to be started within 12 weeks of finishing chemo and my last one was on 1st March.Maybe they will tell me more on 8th July

[Ruebacelle in reply to Deanna39]

Let's hope they have something positive to say on July 8. Gooduck

[Casamimosa in reply to Deanna39]

Hello sorry to hear you are feeling so down, but as others have said it's very early days I was in hospital for 18 days and had a minor infection in the wound that was treated by district nurses every day at home. I also had 6 chemos prior to the op but was given 3 more after the op, to mop up as they put it. Then started on parp tablets within 8 weeks of last chemo. We are all different but ask when you see consultant on the 8th July if more chemo then maintenance tablets is an option. You won't believe us but you WILL improve each day and it will be worth it. Take care and rest try a little thing each day but dont beat yourself up if you can't be bothered, that's normal. It takes a while to come to terms with a new you but it's better than the alternative. Don't put up with pain get what you need to be pain free. You are worth it and believe that. Sending positive thoughts and hugs.