I'm booked in for major surgery (in August) and am asking for any and all tips you have on dealing with this absolute arse of a diagnosis.
I've read a couple of pastel coloured leaflets, but it's all a bit vague and unspecific. I want tips from the front line!
I'm 39, have no children, and am having a full hysterectomy (plus appendix and omentum out). It sucks. This subtype isn't usually responsive to chemo, so surgery and hope seem to be the main treatment.
Current diagnosis is stage 1, grade 2 mucinous OC. I've already had right ovary and tube removed, along with a 12cm mass.
From the practical to the psychological, the grand to the mundane: what helped you through treatment, and what do you wish you'd known in advance?
Xx
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JanTheHesitator
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Hi Jan Firstly I just want to say I'm sorry you have this diagnosis.
I have never wanted to know the ins and outs of my diagnosis. I'm a ' I have Cancer, lets crack on with what I need to do', doesn't work for everyone, but works for me, my coping mechanism. I think everyone deals with the diagnosis in their own way. Originally given 'a couple of years' in Oct 2007 but as you can see despite 2 recurrences still here. I have been lucky, I am well aware of that . I am Stage 3 (confirmed in error). I'd say don't google if you want to know what will happen to you, google is full of outdated statistics and not even your Onc can tell you what will happen to you..... I'm a prim e example. Take each day as it comes. Try to remain upbeat (goodness that's easier said than done) otherwise you will just waste time worrying etc about something that worrying won't change. I do wished I'd know how easy it is to have a PICC line fitted which in turn made the administering of chemo easier (no jabbing of the needles!). Don't be put off if you are offered one! Look or ask about trials (I am currently on my 3rd). They aren't for everyone but do offer the chance to take a new drug, be monitored very closely etc, something to think about. Don't be afraid to push for alternative anti sickness pills if the ones prescribed aren't working. Don't be afraid to challenge your Consultant. I changed mine, didn't like his lack of 'bedside' manner. Seek counselling if you feel yourself becoming overwhelmed, it does help. Does your local hospice have a centre when you can go for alternative therapies? Don't get scared by the thought of a hospice they are amazing places and can be of enormous support to help you through treatment. I'm trying to wrack my brains (what little there is) for more information for you. Hope the surgery goes well. I'm sure other ladies will be along soon with useful tips. Kathy xx
Thank you Kathy, these are great! I've been trying to resist the temptation to google. There's a hospice near me, and now I'll look into it on your reccomendation. Xx
Sorry to hear that you are wrestling with OC! Mine isn't mucinous but I am sure you will get some replies from others with the same. In general I would say limit your knowledge to what you need to know right now-otherwise it can be overwhelming. Don't look at the stats-they don't really reflect what happens to us individually (stats say I shouldn't be here-4 years after a stage 4 diagnosis).
I rather under estimated the impact it would have on my life-despite doing pretty well. You may feel down sometimes-it is a lot to get your head around but equally I have had such enjoyable times as well, partly because I am more inclined to say 'yes' to anything! Best of luck with your treatment-we are here for you with support or any questions you have-usually someone here will have gone though it! xx
Thank you! I've noticed myself feeling much more devil-may-care since diagnosis, and am going to follow your advice and say YES to the good stuff I can still do.
1. dont bother with night ware, make do with hospital gown, but take slippers with nonslip sole.
2. Take a small pillow (bought mine on amazon) to hold against your abdomen when you sneeze or cough. Also useful for the journey home if you are travelling by car to protect you from the seat belt.
3. At home be kind to yourself, accept all help offered, don't fret over housework or ironing it can all wait. Have good quality ready meals delivered.
Good luck! my op was never as bad as my imagination allowed me to conjure up.
Well said. Good quality meals are a life saver ( and a marriage saver too in my case. I have discovered my wonderful husband can cope with anything so long as he is well fed!)
Thanks Linda, I'm not very close with my family, and I think they're all pretty much in denial as I've not heard much from them. But I'm slowly confiding in friends, and seeing who "comes through". Of all people, my dog sitter has been an absolute angel, calling me just to chat and check in, and when I picked up my dog today, she'd bought me a t-shirt with "piglet" from Winnie the pooh on it (one of my dog's nicknames). I've only known this woman a few months, but she is genuinely warm and caring - and has talked to me more than my sisters!
1. Definitely a pillow or equivalent to cushion stomach for journey home. (My other half managed to bump up the kerb on my journey- I nearly killed him
2. If you can manage without codeine as part of pain relief and just have paracetamol then do it as it will lessen constipation that everyone gets afterwards. (I only needed paracetamol for 4 days after the op).
3. If you can prepare some foodstuffs and put in the freezer so it is easy when you come home all the better. As part of this get some treats in ready for the recovering days watching TV / internet/ reading etc. You need pampering.
Thanks Fay! I'm allergic to codeine, morphine and most opiates, so i get to have "the good stuff": oxycodone 😂, its the only one I tolerate, and even then needed dose of anti-emetics.
I didn't have too much of a problem with constipation after my last op, although the gas type pains were horrendous (I think from how they have to shove everything about). But I guzzled coconut water obsessively and that can have a laxative effect in large quantities.
I had a fertility-sparing laparotomy for endometrioid ovarian cancer earlier this year. It's such a scary diagnosis to come to terms with.
As others have said, a cushion to hold against your stomach is really useful. In hospital, they recommended a rolled up towel to hold against the wound when coughing, which helped.
Keeping on top of pain, nausea and constipation will also help. If you need help, don't be afraid to ask for it.
Psychologically, I've found it helps to write feelings and worries down but to be open with people about concerns too. This site is great for communicating with people who understand the horrible disease and what the treatments entail, as well as the emotions around it all. xx
Thank you, I'm actually a writer by trade (copywriter, and the occasional dabble in screenplays), so usually do turn to the page for solace.
For some reason I haven't been able to do that yet. I tried a couple of times at my partner's urging, but it was too much: I got so upset and angry. Mainly at him!!
I'm sure I'll write when I'm ready. It's odd, I've written my way throughoutmy life, but with this... I just can't face it on the page yet. It's peculiar.
Thank you for reminding me that it exists as an outlet though xx
I previously found keeping a diary quite therapeutic, but stopped a while back. I agree that you'll write when you're ready - it's there as an option when you feel like it. For me, I needed to build up a bit of a rant to get going!!
All of the above, I was 1c mucinous, had 6 months carbo/ taxol and still here 5 years later.
Wet wipes, earplugs and sleep eyeshade as hospital wards are not quiet.
Loose clothing as you won’t want anything tight around your abdomen. Socks, although it is warm.
If you have to have chemo, get your scarves, wigs ect sorted as you may loose your hair and I found it best to have my head shaved as it helps with re growth and not seeing it fall out.
All this is do able, not as bad as you think, you have this and we are here to help,
Thanks Carol, it's good to know mucinous isn't the scary rarity that means automatic 12 month sentence! I was getting upset at the possibility of being up-staged once they've run tests on what they remove in August. It's good to know that chemo worked for you. I'll add that to my list of questions for the gynae-oncologist. Xx
Definitely the pillow cushion to go home. The spare bed (if you have one!) means you can spread out and not worry about him accidentally nudging you.
I tried a little walk each day, very slowly and I literally started with 2 minutes, building up very gradually. Eat the food you love and fancy, but keep up the fruit and veg and water, the constipation was horrible!!
On the ward, my phone and earphones were my life saver...without being horrible, the lady next to me really wasn’t well and the noise through the night was not nice to listen to...plugged into some music to drown it out!!
Allow yourself to repair and understand that it takes time but it will come.
Know that you probably will get grumpy with those nearest. My mum used to get really upset, until I told her ‘I’m not angry at you, I’m angry at the situation I find myself in. It will pass but for now I have no control over it’
She then knew that the days would pass and I would stop being grumpy!! Take help...my dad constantly wanted to hoover my house. I didn’t need/want him to, but it made him feel useful!!
What do I wish I’d known? All of the above from the ladies!
I wish I could get my partner to understand this! I haven't even been that grumpy or difficult (though I daresay my perception of myself isn't perfect), yet we keep having dreadful conversations.
He's being an infuriating mix of head-in-the-sand and oh-poor-ME about it. I *know* that it's something he's going through too. But it's not actually his life. We don't live together, so it's not like he has to deal with some harridan every day.
Tbh, right now he's being more of a burden than a support. Just had a 2 hour row with him on the phone, and neither of us are fighty people. In fact we were always sickeningly lovey and communicative.
Hi, I love the thought of your dad hovering as I has a couple of male friends who did exactly the same thing, bless them!! Good luck we will be thinking of you xx
Take your time with your recovery. Believe me trying to rush it only makes you miserable.Doctors ALWAYS underestimate how long it takes so whatever they say double it.
Your energy reserves will not be brilliant so be clever about what you spend your energies on. For me cooking, shopping and housework were low priorities so I now shop on line, invest in good quality ready meals ( Waitrose own and Charlie Brigsham are favourites) and employ a lovely cleaning lady.
And saving the best until last. If you haven’t got one already get a dog. They are the best thing ever. Unconditional love, unlimited joy and the greatest reason ever to get up and about.
Oh my 18mo Jack Russell x Dachshund is the only reason I didn't hurl myself off the sea wall when I had a truly terrible 24hrs a few days after I first found out!
She's a life-saver (and occasional life ruiner 😂) for sure. Her dogsitter is actually one of the people who has come through and been most caring. Xx
How are you doing? I still remember that get-together in Worcs..
Am thinking of getting a dog...did you get yours when you were in between chemo or before? They are a responsibility... but give so much pleasure don’t they?
Thank you! I remember thinking "must add long charging cable to shopping list" during last hospital stay, but of course had clean forgotten until you mentioned it. Will investigate ginger. X
So sorry that you are in this situation. It’s normal to feel scared at times , we all did this, but as the other ladies have said , keeping busy and active when you can will help you get through this easier.
You are very young to have to face this. But if your current diagnosis remains the same after surgery( hopefully it will) , your outlook should be really really good.
I had what turned out to be a borderline mucinous tumour removed in 2010. The surgery is a big operation, but hundreds and thousands are done every day. Resting is really important for the first few weeks after the operation, especially because this will be your second operation.You will need a minimum of six weeks off work, possibly more , as when cancer is in the picture more digging around is needed and recovery might be longer. I found mindfulness really really helpful and still do. At 39 you may want to consider HRT for your bones and to help menopause symptoms , if they occur.
We had a beautiful cavalier King Charles spaniel and a puddy cat when was diagnosed. Charlie never left my side, I’m sure your little doggie will give you loads and loads of love and support.
Thank you. I do remember them mentioning HRT in the very first appointment, when a hysterectomy was still quite theoretical.
I'll definitely be taking it if I can (hopefully mucinous OC isn't a hormone-fed type). I believe the oestrogen-only pill is the safest choice, but will ask around.
I love KC spaniels! Especially the cavs, they've got the prettiest faces.
I was scheduled for this very same surgery but my onc decided to do 4 rounds of chemo first to shrink the nodules that were throughout abdomen, especially my omentum. Results were great and Drs were able to do my surgery robotically. I don't know if this is an option for you but I was able to go home the next day and recovered very quickly. I had 2 more rounds of chemo after healing up and now I am getting ready to start on a parp inhibitor called Lynparza. Best wishes to you!
As I understand it, the type I have (mucinous) isn't usually responsive to chemo, so it's full steam ahead with as much surgical removal as possible.
I know the robotic/laprascopic surgery has a faster healing time. My last surgery was open, so I've already got a nice big scar line from just under belly button all the way down. Part of me thinks I'd rather they used the same 'line if possible, and maybe get a better view than with the keyhole option...
... but of course I'm not a surgeon, so don't know if this is a) even possible, or b) correct!
The big op was nothing like as hard as I had expected. I wasn’t in much pain at all. I was surprised I couldn’t eat much at all for a few days after the op so I missed my Xmas dinner! Give yourself plenty of time to rest up and recuperate. Expect to sleep a lot and spend hours watching tv. You’ll know when it is time to start walking again and gradually build up strength. Good luck with it. I hope you do as well as I did.
Thank you, you're right about listening to one's body. I was ravenous the day after my initial surgery, but only for salty hula hoops, and dairy milk - so that's what I ate 😂 The junior consultant laughed when I tried to mumble an excuse and said "Oh no, that's exactly what we recommend! Keep up the good work".
I'm trying to stay focused on the positives, but admit to having the occasional pang of sulky despair - because I'm doing so well recovering from the last surgery - and it feels a bit like it's somehow wasted effort, since they're going to go in again.
I know this is irrational, but I look at the incision line, and see how hard my body has worked to repair it, and feel quote cross!
All of the above plus peppermint teabags ( all I could manage for a few days). I was amazed that the pain was controlled by paracetamol but the piles that went with the constipation meant a supply of suppositories was needed. Getting to see a gp in time wasn’t easy so if it’s your downfall preorder them.
Lots of green veg, lots of fluids. You may need some nice food smuggled in or soups if you don’t have much appetite. Heal well.
Good tips, I didn't get constipated after the last surgery (terrible gas type pains though, a nurse said it's because "they really have a good old rummage around in there" 😷), but I wonder if I'll get so lucky again! Especially since this surgery will be happening exactly 11 weeks and 1 day after the last one. Xx
Look up cimetidine. It is suggested for use pre (5 days) and post op (2 days) to prevent metastases lifeextension.com/magazine/...
There are other references if you Google.
Read Jane Mclelland's book How to starve cancer. I wish I had read it before my recurrence. There's a chance to give yourself an advantage with a few repurposed drugs.
Thanks for the recommendation. That book popped up in my "you might like" list on Amazon (scary search engine technology!) But its so hard to know whats useful/scientifically sound, and what's just nonsense.
I'm definitely willing to make lifestyle changes to give myself the best possible chance. Although I don't smoke, rarely drink, and am not "overweight" (whatever that even means, I get quite cross about the body shaming that goes on in the name of supposed health!). I'm 39, and pretty active, though I daresay I could eat a few more vegetables.
The book is definitely not about shaming yourself. I see it as tools for hope! It's an introduction to various repurposed drugs and supplements such as Metformin, cimetidine and Berberine that can be used alongside conventional treatment to possibly improve your outcome.
I had a quick relapse from 1st chemo, then the 2nd chemo failed 2 years ago. Thanks to various supplements and repurposed meds, I'm pretty stable with improving quality of life despite having active cancer. Long past my doctor's expectations for me!
That’s great news. I’ve read it too but the NHS doesn’t approve of the drugs yet. My onc is happy with aspirin though as they are trialling it here for other cancers. I feel the metformin and fenbendazole is only a little while away. Unlikely they’ll go for the antibiotics as they are so scared of superbugs that are antibiotic resistant.
Isn't it frustrating!? I've only *just* begun to look into this stuff, but have noticed that the few occasions I've had antibiotics over the last 5-8 years, I've felt marvellously better. Above and beyond the relief of the tonsillitus etc. Mine is a slow-growing subtype, so I wonder if the antibios helped my body deal with it?
I must say though, for all its faults, the NHS is a blessing. I'm not rich and wouldn't be able to afford super-duper private health insurance if I lived in Australia/the States.
What a great question - one tip which you obviously don’t need would be to ask lots of questions to help keep a feeling of control. Three more tips:
1. Keep lists of questions for the often unexpected visits from medical staff ... often when you’re not quite awake yet ... it’s great to make notes as it forces the doctor to speak clearly.
2. Be kind to yourself - for me that meant having my favourite episodes of Grey’s anatomy to watch on a tablet (downloaded as WiFi is often rubbish). Also, splash out on a good phone charger/headphones/ whatever tech stuff will make things easier.
3. Plan little things to look forward to ... a phone call with an old school friend, a morning when you can sleep in, your favourite chocolate... I found I had to learn to be patient so little things to pace myself - step by step - can help.
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