topic Re: 12 months ago today - Ovarian tumor... in Living with and beyond cancer

12 months ago today - Ovarian tumor...

DonnaS — Thu, 16 Aug 2018 02:20:46 GMT

12 months ago today at the age of 45 I had surgery at Monash Moorabbin to remove a 15cm ovarian tumor. In addition, I had a full hysterectomy, my appendix, lymph nodes and some of the lining of my abdomen was also removed.

1 week after surgery, I received the news that the tumor and my left fallopian tube were borderline malignant but the rest of me that was removed was benign meaning I would not be required to have further treatment.

It has been a really big 12 months recovery for me. Getting through the initial diagnosis and surgery – I had my positive and be strong hat on. However, over the last 12 months – I have struggled with the loss and the shame of how my body now looks and works – and then guilt for feeling that way when I am really one of the lucky ones!

I have a large 25cm vertical cut from my pubic bone and up past my belly button towards my sternum. I have never had children and this loss has affected me in strange ways.

I have an amazing husband and incredible family – but I have found it hard to really find anyone who understands the way I feel. For those around me – my scars are hidden and they think I am fine and fully recovered – but for me I don’t really feel that way.

I would love to online chat with anyone who has been through similar circumstances…

Thanks, Donna

Re: 12 months ago today - Ovarian tumor...

cassie — Thu, 16 Aug 2018 19:23:47 GMT

Hi Donna,

In August 2015 I was also diagnosed with ovarian cancer ...i had a tumor on both ovaries and was in surgery 2 weeks later having a radical hysterectomy...I remember feeling very depressed during the recovery stage and then 3 weeks later my surgeon told me i would have to undergo 6 mnths of chemo as one of the ovarian sacks holding the cancer had split which may have released cancer cells.

I too have a long scar which has changed the way i look but 3 yrs on i have learned to live with that and feel so grateful to be still here. It took a very long time to get over the whole ordeal and in the process i took early retirement after 29 yrs in the same job.

I still have days that overwelm me but most of the time i am positive (which i was constantly told by the hospital staff was so helpful towards my recovery physically and mentally)

I never wanted children and so i didnt really feel affected by the hysterectomy...i just felt lonely but i do have a loving family and great friends and with thier constant support i now feel on top of the world.

I hope in time you will too!

cassie.

Re: 12 months ago today - Ovarian tumor...

DonnaS — Thu, 16 Aug 2018 23:15:44 GMT

Thanks Cassie, I am so thankful you took the time to respond to me. I think half my battle is that I feel like no one really understands me. Just to know I am not alone is huge! Thank you for reaching out and telling me your story.

Re: 12 months ago today - Ovarian tumor...

cassie — Tue, 21 Aug 2018 16:09:41 GMT

Hi Donna,

I remember feeling alone and being drawn towards anyone who has/had cancer ....its such a shocking experience that can only be understood by others in a simular position but in time as your strength grows and the appiontments produce good results those feelings will wan but will never go entirely. Cancer does change you it may be in a big way but its the little things with me and it shows you who really cares (which was an eyeopener !) but most importantly it puts life into prospective.

Stay positive!

Cassie

Re: 12 months ago today - Ovarian tumor...

sue21 — Tue, 25 Sep 2018 08:21:31 GMT

I understand how you feel . I have the same scar i was dx primary Fallopian tube cancer .I have been No evidence of disease since the 8/8/2018 . I have my first 3 mth check up is in December 🤞🏻

Congratulation on 12 mth anniversary .

Re: 12 months ago today - Ovarian tumor...

DonnaS — Tue, 25 Sep 2018 09:37:23 GMT

Thank you so much for your message. Where did you have your operation!? Are you feeling well? I trust you are feeling okay and looking after you. Thanks, Donna

Re: 12 months ago today - Ovarian tumor...

sue21 — Tue, 25 Sep 2018 11:04:44 GMT

Hi Donna

i had my surgery at Westmead December 2017 . Started chemo Feb carbo ,Taxol every 21 days I had hardly any side effects I feel really good just feel anxious now as I’m not on chemo & my body has to keep the beast away on its own .

Sue xxx

Re: 12 months ago today - Ovarian tumor...

DonnaS — Tue, 25 Sep 2018 21:45:51 GMT

Hi Sue, yes I can imagine your concern - I felt the same way at my 6 month check up post surgery. It does loom over your head - but we are so fortunate that we have such good after care and check ups available. Thinking of you.

Donna

Re: 12 months ago today - Ovarian tumor...

DYB — Wed, 26 Sep 2018 11:55:37 GMT

Hi Donna,

I resonated with you saying that you struggled with the loss and shame of how your body looked but then the guilt because you were one of the lucky ones. I have a large mastectomy scar that I am faced with every morning and night but I look fine during the day with my prosthesis in place. I realise I am also one of the lucky ones and peop!e tell me I look great, however, it is still a rare day that I am not reminded of it throughout the day. Now 18months post treatment I thing I am starting to feel my new normal. I am only just now thinking about going back to some sort of work. It has taken me a long time and I wish I could just get back on the horse but it has been slow for me and I just have to accept that.

Best wishes for your recovery it will happen when it happens and you really can't force it.

Re: 12 months ago today - Ovarian tumor...

DonnaS — Sun, 30 Sep 2018 22:33:17 GMT

Thanks Dy,

I really appreciate you taking the time to respond. I think a big part of our healing process (aside from dealing with the 'new me') is knowing we are not alone - thank you for your message.

I am glad you feel you are getting to that point - the 'new normal'.

I think accepting that it takes time too is so important.

Thanks again

Donna

Re: 12 months ago today - Ovarian tumor...

sue21 — Tue, 27 Oct 2020 07:44:33 GMT

Hi Donna

I just found your reply . I hope your doing well.
Sue21

Re: 12 months ago today - Ovarian tumor...

Toni3 — Tue, 27 Oct 2020 10:25:59 GMT

Dear Donna, I can so relate to how you feel and it is good to talk about it with others who can understand. I had a rare GIST on my stomach removed 15 months ago. My scar is not quite as long- from belly button to breast and like you I have a wonderful husband but he doesn’t talk about things or feelings even after he had melanoma surgery this year. What no one told me was the muscle pain and terrible fatigue and weakness afterwards. Once I knew that was part of the healing I could accept it and just rest when the fatigue hit. I have found walking in nature has been one of the best things to do & reading all sorts of books when you need to just rest. I tried rubbing my scar with vitamin E oil. It has made it almost disappear and I have been taking CoQ10 with ubiqinol to help healing.like you I feel very lucky that the tumour was found in time to remove it intact as it proved to be drug, radiation. And chemo resistant. I try to enjoy every day and simple things like going for a coffee with my husband is special.. I nearly died after a miscarriage when we were first married and I was told I might need a hysterectomy but I decided to try and adopt even a special needs child. Again I was lucky and had a family but my daughter has Down syndrome then at 14 - after 2 years and 13 specialist consults we found she had Rokitanski syndromeAnd she had to have a hysterectomy.. my life has been very much a series of ups and Downs but appreciating all the good things in my life has made me realise how fortunate and lucky I have been..My sister survived lymphoblastic leukaemia 36 years ago and we both think that our attitude of believing we will survive has helped us.
we all have down days and sometimes the body just needs time to heal and rest and a good cry can clear the air. Reach out when you need to and often easier with other survivors than family. Keep well Toni