Motivation for the forever haul: Hello my teal... - My Ovacome

My Ovacome

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Motivation for the forever haul

Ulaparkour profile image
Ulaparkour

Hello my teal sisters,

I am feeling so done. And so full of these never ending chemicals.

I was diagnosed with stage 4 low grade OC in April 2019.

After my frontline treatment, things were ok for a while until I recurred in August 2020. Since then I’ve been on, first carbo only (no success,) and now caelyx/Avastin since December with success. But not the you are cured kind of success, but the you’ll probably be only chemo forever kind of success, maintenance, a marathon. And I’m exhausted at always feeling rundown and the chemical hum in every cell.

I asked whether I could take a break soon, but because of a couple things going on my onco does not recommend it.

I guess I’d like to know how others deal with this idea of chemo for the long haul. I know it is my choice whether to continue, and for now I am still deferring to my health team.

But I am getting tired.

How do YOU do it?

Many thanks.

28 Replies

Hi. I don't know how to do it either. I am on a PARP at present, though don't know if it is working or not and look back on the old me of a few years back and want to cry. I try to get on with life, but feel weak and tired and really OLD! My family are just happy to see me on my feet and see the cancer treatment as a success, though as I told a neighbour the other day, I expect the treatment will finish me off rather than the cancer!

Cancer treatment is brutal but can be successful. I think my mindset is important, so try to focus on living and family etc and put cancer on a back burner to be dealt with when it really can't be ignored any more. Just know that you are not alone. We are in this together.

Jenny

Ulaparkour profile image
Ulaparkour in reply to 27-359

Hi Jenny, Thank you for taking the time to respond. I appreciate everything you said.

It’s humbling to know we are all in this together. Tina

Hiya, I understand exactly how you are feeling. At 3 am this morning pacing my bedroom in pain from a slight bowel problem and a dreadful attack of shingles I was giving much thought to how I can face my third round of chemo due to start next Monday for a second recurrence.

I think there is no simple answer what motivates us to keep on keeping on, we are all different although on a very similar journey.

Like Jenny I want to be the old me again but am becoming more accepting it’s not gonna happen. So now I am trying to live more in today( not easy I know when it’s a tough one).

Also the hope that this summer I will be able to see and hug my grandchildren who live abroad and I haven’t seen now for 18 months is one of my big motivators .

It does sound like you need a break though and I

hope that you get well enough to have one soon. Then you might be able to have some gentle

rest and recuperation.

Sending a virtual hug.

Jan.x

Ulaparkour profile image
Ulaparkour in reply to Litchick

Hi Jan, What a trip we are on. Thank you for your kind words and support.

Yes, I wish things were different for both of us. Alas...

You, dear Jan.

Enjoy those grandkids!

Virtually hugging you back : )

Yes it is draining and weary. It is hellish at times. But it is a heck of a lot better than the option of not having treatment and letting the damned disease run amok. I do what I can when I feel well and try to rest -- without guilt -- when I am not. It is pointless looking back at the "old you", just as it is pointless looking back at all your mistakes in life. The "now" is what matters and I try to be grateful -- grateful for my husband, daughters and granddaughters, for wonderful friends and caring neighbours, for my garden, for nature, for blue skies and smiley faces. Grateful that it is me that has been diagnosed with cancer and not any of the little children I know.

Chemo does age you, but time does too. And at least the chemo is giving us time ...

Sometimes it is nearly impossible to be positive, but it is so important. Put on some lipstick and eyeliner, force yourself to go out for a walk and smile at everyone you meet. Put on a brave face to the world and remind yourself you are not a victim but a survivor.

I do so, so hope you start feeling less exhausted soon. It really is ghastly. I send all my hopes and prayers to you for a good outcome, and hope you soon feel more able to face this never-ending battle x

Lyndy profile image
Lyndy in reply to Cumbrianlass5

That’s such a good thought ‘not a victim but a survivor’. The way we are often described as fighters or brave and doing things despite a cancer diagnosis is not helpful, I find. I have a ‘pity’ radar which goes off at the least sign and gets ar**y!

Cumbrianlass5 profile image
Cumbrianlass5 in reply to Lyndy

You are so right. Nothing makes my blood boil like people telling me I am brave (what option do we have) and, even worse, saying I must stay positive if I want to beat cancer. (ffs I am inoperable; positive or not it will get me in the end but I sure as heck plan to keep going and keep fighting as long as I can. All the best my dear x

You friend, give some good no nonsense advice. Thanks for the perspective. Perspective is everything.

Sometimes it is easier than others to have a healthy perspective about this wretched disease! Take care and all best wishes x

Hi You have just summed up how l am feeling at the moment. I was diagnosed in 2012 stage 4 and am currently on 5th recurrence after being on a parp for almost 2 years. I personally think l have coped quite well hover the years but no not this time l really do try to be positive but am finding it increasingly difficult this time, although thankfully l feel relatively well physically, mentally l feel really flat and find it really hard to motivate, l find myself crying for no good reason and just staring into space! I have a scan next week so hopefully when l know what's happening l will be able to get on with it. I am sorry l have not been much use to you but let's hope in time we both feel a lot better x

Lewis, My heart goes out to you. You have been on this journey a long time and I admire your resilience. I find answers and info always help me, whether it’s good , bad, or somewhere in between. Hopefully the new info will help form some new ground from which you can catapult yourself back into health. You seem to be good at that. ;)

Sending you big hugs of love and support. It’s nice to know we’re not alone. Maybe while we stare aimlessly into space, from time to time, we can imagine each other emerging in the fog smiling and waving. Not alone💚

Which was ur longer remission without chemo?

Probably the parp inhibitor Niraparib, and previous to that Avastan around 18-24 months.Hope this helps x

2 years remission it is great, i am no little bit shoked as my mom has OC stage 2b and chemo on 2017 and we thought we can forget about it... but last week she make scan and ca 125 it was up from 18 to 220, i was shocked after we saw scan and there is disimination all over abdomen... and also lymph.. i and outside liver... i am crying from last week, and dont understand how much time my mom have... and will chemo on sunday which will be start will help her,,, and will she get remission? So much questions OMg

I feel the same, its the relentless merrygo round. With a lot of illnesses you get through it, get cured and put it behind you, with OC you cant. My friends are always telling me how well Im doing, how well I look. Yes, but thats the outside, the inside is different. Now that we are getting more freedom after Covid I do feel slightly better mentally as you can get out and do other things instead of being locked into yourself and dwelling on the illness, but I still have to plan round how Im feeling during chemo and hospital visits, which will always be with mebut as they say its better than the alternative.

Ulaparkour profile image
Ulaparkour in reply to rosebine

Thank you rosebine,It is not for the faint of heart. You know exactly how I feel.

Hi, I feel the same way many times. This cancer journey is not for the faint hearted for sure. It’s hard to keep a good attitude and smile with friends and family. Just know that you have love and support from your teal sisters. Sending a hug from the U.S. Donna p.s. it’s’ 7:30 a.m. here in Michigan and I never get up this early- just couldn’t sleep well last night. I think I looked at the clock all night long. I’ve been sitting here since 6:00 a.m. I’m going to feel so tired today, ugh.

You are wonderful. Thank you for reaching out and helping me. Big hug back.

Hello piano player, I'm in Bay City! Nice to see someone else from Michigan on the site. 🙂

Hi Kaydale, yes so nice that we live in the same state. I’m in G.R.and I have excellent medical care here. Hope you do ok 😊

Oh, Ulaparkour, my thoughts are with you as well as some understanding.

I’ve been having weekly Paclitaxel since February and my oncologist said I should be on it until the end of August. I have had a “good partial response” so far; it’s good but I’ve got used to the idea of never being cured. It’s about living with this disease.

I’m thinking of taking a break from chemo at the end of June then going back on it. Maybe you could do the same despite what your oncologist has said. Once we’ve had a little holiday we can go back onto the chemicals so they can resume doing their stuff.

I must say that I am also exhausted and low haemoglobin isn’t helping, although at 92 it’s not so low as to warrant a blood transfusion. I hope you can cope with the treatment as it is necessary to control the OC and maybe you could get a boost with a blood transfusion.

It’s all about balancing the treatment against your quality of life. If the treatment leaves you with no joy in your life then I think you should have further discussions with your oncologist. Perhaps a planned short holiday would benefit you more than continuous chemicals.

I find I need something to distract me and I took up painting, including courses online via Google Teams. We all need something to bring us pleasure but try not to resort to comfort eating or alcohol. Do you have a hobby or could you find one? Even when fatigued try to spend some time to get out of doors now it’s warmer. Just try to get to a green space, by taxi if necessary, and listen to the wildlife and watch nature.

I wish you the very best and send you hugs,

Iris 🤗🤗🤗

Ulaparkour profile image
Ulaparkour in reply to Irisisme

Oh iris! 92 and on Paxil... I bow to you. Thank you for your your message and advice. I wish you the best on your journey too. Virtually hugging you💚

Hi. So sorry you are having such a tough time. It occurred to me reading your post you need to be kinder to yourself. Let your inner voice speak in quiet gentle words. I do think you need to allow yourself to 'grieve' the loss of your old lifestyle but your original spirit is still in there. Your spirit and persona do not have cancer your body does. We all have our own ways of living with this horrible disease this is mine. It takes effort to get there and that can be hard at the moment but it's worth it for longer term peace. Sending a big hug.x

Hi Tina. I too feel the weariness of keeping on keeping on. The endless trips to the hospital for my weekly Taxol, Covid swabs, blood tests etc. But the alternative isn’t an option for me even if I have only limited success at holding back the tide! I have had some very down days but often after a good cry when I have been on my own I somehow buck myself up to face the world. I think Covid has had a big part to play as I feel less a part of my family’s lives.

I recently popped over to meet my daughters and the grandkids and felt like a distant shadow of myself. Their other nanny was there and so much more exuberant and the kids chatted and cheeked her like they used to me. Just felt they were being very polite and attentive to my needs. Like I was the old lady.

This week I have had cardio and eye appointments and bloods, covid swabs and chemo. Today I get the results of my CT scan. Feeling very anxious.

Just when I was looking forward to celebrating my wedding anniversary this weekend (44 years) I now have to have a blood transfusion as bloods below 9! Life is a rollercoaster! .... the sun is out and warm and dry enough to be outside! Hoping the transfusion will buck me up too and I can get some decent sleep. Keep smiling. Keep strong. 😀💪🏼 Cheryl x

Morning..

I can totally imagine how you might be feeling it sounds like your journey has been similar to mine ... diagnosed in July 2019 stage 3c... recurrence in August 2020... now on maintenance programme Niraparib... agree there are days that feel like its a struggle to just exsist...but i try to get out as much as possible.. even if its just popping my head out the front door... i have found an amazing lady who does oncology massage and for me it gives me time to just be like my past self... I try to plan small things every 2 weeks even if its as simple as meeting a friend for coffee.. I really miss being as active as i used to be the tiredness can just hit you like a door slamming in your face... but i have found swimming helps even if i only manage 10 laps, sometimes i just walk the width of the pool just being around people doing some of things i loved makes me feel like i am still part of it... the thing I miss most is what used to be my love for food, now i just dont fancy it it all tastes so bland and i really have to push myself not to just eat eggs and toast....

Just knowing there are others out there that feel the same as you makes you feel like you are 'normal' even if its not the kind of 'normal' you had envisaged for yourself...

Take care and celebrate the small things that you do achieve.. even if its just brushing your teeth (you wil always l have a clean bright smile )

Sadie

A recurring question for all of us in palliative stage. I eat well vitamins homeopathic drugs sleep escape movies dogwalks cat snuggles. Living w brain fog which I hate and remnants of neuropathy but I am healthy bloodwork fine I just have cancer and a love of life. So long as thats the case I will continue ending my 6th year 6 lines on break while we look for a trial. Also I have a higher power on speed dial. Hugs from paris

Hello Ulaparkour

I was diagnosed in 2017 with High Grade Metastatic Ovarian cancer and am BRCA2 positive, not that I knew that or I would have taken control many years ago.

I am on 4th line chemotherapy which is an 18 weekly programme of paclataxol, I have done 15 weeks with 3 more to go and can only hope and pray for positive news when I speak to my consultant in 2 weeks time.

When I feel like you are feeling I read and reread a poem by Johnny Ray Rider Jnr. Called The Oak Tree, please read it. And I hope it will give you the boost you sound like you need at this moment in time of your journey.

We are all different with different views and opinions but mine in almost 4 years remains unchanged. How dare this vile disease try and take over my life, I will fight it every single day while there is breath in my body and different treatments available, I will never ever give in.

I wish you well my lovely, I really do I think you just need to adjust your mental sat nav a bit and show the cancer who is actually in charge. Xx

Hi. I recognize what you’re feeling right now and appreciate what all the people who responded have said. I was told during and after chemo for first recurrence that I would never be ned and would always be on treatment. I couldn’t even process it but the oncologist was quite cheerful about my status which made me angry. I don’t see treatment or maintenance for OC as similar to taking high blood pressure meds for the rest of my life. Anyway I went on Olaparib and it got me to ned within a few months. I was so lucky! It was tough tolerating it for a long time but now is easier. I still have a lot of anxiety about the future but I’m in a much better place than I was both mentally and physically. I hope you can have a break and refresh yourself. Xx

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