New almost diagnosis looking for support

Dear ChottsML

I am so sorry to hear about what you are experiencing, this is such a shocking diagnosis for you, with its additional wider implications about having a child in the future. I’m not surprised that you feel your world is ending.

I am a much older woman who had Ovarian cancer I. 2023 and can hopefully provide support about the practicalities of the surgery and chemo. Has your consultant given you any info about what happens next? I suggest that you contact the MacMillan nurses at your hospital as they will be able to provide more details.  In addition this website has an information section on Peritoneal cancer (which is what ovarian cancer is) and that it worth reading. 

My surgery covered a wider scope than yours sounds, so my recovery was longer, however, depending on your job you could return after 2 or 3 weeks , especially if you can work from home and rest for some time in the day. Again this website has a section on finances. 

I had 3 sets of chemo pre surgery and 3 sets post surgery. My daughters described this as the operation was like removing the wasps nest from the shed and the chemo was removing the final few wasp stragglers ️ I liked the analogy. 

Chemo varies from person to person and also from drug to drug, for me it was as follows. There was a 21 day cycle, with day 1 the infusions. Day 2 and 3 felt good because as part of therapy you receive steroids which help cope with pain and give you lots of energy for the two days (I even went to the gym on days 2 and 3). Days 3 onwards are hard, needing painkillers at regular intervals, fluids and rest. By day 9 I was back to normal.  I was fortunate in that I didn’t feel nauseous but in any case they do provide anti nausea drugs. My hospital also had a 24 hour helpline which you can phone at anytime if you are anxious or experiencing symptoms.

Coping tips

• I made myself a survive and thrive playlist which I listened to at difficult times. It helped.
• gentle exercise everyday. It helps with recovery and takes your mind off what is happening to you
• Build in activities with friends and family that remind yourself you are more than this diagnosis and bring you joy
• ask clinicians if you can record discussions in your phone. They do allow this and you will forget lots of what you are told in a meeting 
• Remember that life is the most precious gift we have and that as horrible as all this is, it is designed to maintain your life. 

I wish you well with the next few weeks  

Hi JackieL

Thank you for taking the time to reply and so lovely and detailed as well. Reading it is bringing some comfort in what still feels like a very bad dream. The wasp analogy also makes it easier to digest.

I haven’t had any further information about what happens next but the specialist nurse is ringing this week to hopefully give me more information and answer any further questions. I think in all honesty I need everything explaining again.

I really love the idea of a playlist and will absolutely be doing that and really appreciate you signposting as well. 

Thank you 

Hello, I am so sorry to hear your story. It was my birthday two days after surgery.  I told everyone I would celebrate when I got home so that was nice.

it is a lot to take in, I took it a step at a time which helped me.. mine was found by chance in September then a provisional diagnosis until it was confirmed on Valentine’s Day..

once I had my diagnosis I then moved into the treatment which I am dreading but again I will take it step by step.

there are benefits which you can apply for once you get your diagnosis.  Do you have a clinical nurse specialist or welfare rights they should be able to advise you. The last thing you need to be worrying about is money.

sending lots of support. 

Hi lovely,

I have a stage 3 clear cell ovarian carcinoma. I was also told initially, like you, that ‘it was very likely cancer’ (not an endometrioma like the gynae doctors were telling me for months prior while I was in agonising pain). I turned 41 four days before my total hysterectomy, it was a surreal birthday.

It is all very scary and I found the best way to approach the all-encompassing fear was to focus only on what was right in front of me, taking everything one step at a time. I’ve had some very dark days (and many more nights, as I struggled to sleep post surgery) but I found that talking to those offering support helped me a lot. Cancer support nurses, (some) friends, family, other people going through treatment. I am now in surgical menopause and aside from the occasional hot flush and slightly slower brain, I don’t feel much different.

I am self employed so money is a big concern with critical illness, but I am getting through okay, having been off work for about two months and using my savings. The upside is, you won’t be spending much while you’re getting treated / recovering. So as long as the bills get paid, you will probably be fine. 

I found the first two weeks post surgery very difficult due to pain, total exhaustion, limited ability to move and fearing how well I will heal. I’ve had some complications too and my scar is *still not fully healed. Third week I had a turnaround and started to feel little improvements. Now, four and a half weeks post op, I am walking almost normally and regularly taking trains to the hospital by myself this last week. I am even starting to think about work again - I didn’t think this would be the case so soon. Just goes to show that you really can’t know what to expect. It does *not* have to be the worst; could turn out you’ll recover better / quicker than even you expected. 

I’ve started reading Joe Dispenza’s book ‘Breaking the habit of being yourself’ and it has been such a great tool in stopping the fearful, negative thinking. Perhaps you could suggest it to your partner, it’s on Audible too. 

I will be starting chemo first week of march and the hair loss is a big concern. I am trying so hard to look for positives - meeting and connecting with other patients, having fun with wigs and make up, etc. I even thought of dressing up for the session, to make myself feel pretty and special rather than sick and sad. I am increasingly gaining an attitude of ‘I will do what I want, life is short’, which is actually quite liberating. 

Anyway, I hope this will provide you with some comfort. 

Mx

I absolutely feel for you, ChottsML. I was diagnosed with stage 3 ovarian cancer three weeks ago—it was an accidental finding during a completely unrelated procedure. I’m 41 and prioritised my career over having a family, but I had planned to start trying for a baby in a few months. I’m due for a total hysterectomy in a week.

I think you’re right that, in a way, the world feels like it’s ending. It’s hard to accept that the life you thought you would have won’t materialise the way you wanted. Someone told me that it feels like a certain type of death, and that’s exactly how it feels to me.

Regarding finances, I believe Macmillan offers advice on financial support and benefits. You might be able to access things like free prescriptions or reimbursement for travel costs to the hospital. My work has been very supportive and has even offered me the option to work from home on small tasks so I can still get paid if needed—hopefully, that could be an option for you too.

As for fertility, that’s such a tough one. What helped me was having a discussion with a fertility consultant, who explained why egg harvesting wasn’t possible for me. It gave me a sense of closure, knowing I had explored all options, and allowed me to start the grieving process for that loss. 

This is such a bewildering time for you and your partner. It’s the same for me and mine—he’s incredibly supportive, but I can see how much his world is crashing down too. He’s scared for me, while also trying to process that we won’t have biological child we always thought we would.

I truly believe things will get better for both of us. Sending you lots of support