Laid in bed unable to sleep, in little discomfort due to the xxxxxxx inside. The Letrazole haven’t done any good CA125 now just over 130. No surprise I knew my body, niggles, back ache then the indigestion etc . Plus I can Feel the lump in my left
Side again. Never been symptomatic before with reoccurrence and it’s making me feel very down. Not the discomfort just the rollercoaster again. Has scan Tuesday so waiting to see onc. He said I’d be back on the chemo. I’m so fed up I just don’t think I can do it anymore, the weekly trips to chemo, ulcers, nausea etc etc. I feel like my fight has gone, which isn’t me. Maybe because I hate not been at work and miss it so much, plus the shielding, all I think is negative thoughts like “what’s the point?” “What if it’s worse then we think and he won’t give me treatment? And do I want any?” Tried keeping occupied during day but when it comes to chill in afternoon or bed time my head goes again.
Sorry for rant and moan.
Love to you all amazing warriors xxx
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Samjane
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I'm so sorry Samjane that you're having a rough time. It's so hard not to feel down sometimes and focus only on the negatives. Whats the plan with your rising ca125? I was reading your 'bio' and it seems like you were diagnosed in 2014 and have had one recurrence? Will the plan be for chemo if the Letrezole doesn't work? I had a day like yours on Monday and just felt I couldn't snap out of it. I could only focus on the future (or lack of it I felt) and my beautiful daughters who are so young. I felt my heart was breaking. But the next day I thought I must try and think positive and look at all the women who have had five or six lots of chemo and are still going strong. That could be us. There will be a plan for you should the Letrezole not work and there will be options which put you into remission again I'm sure. For today take it easy, try and get some fresh air and pamper yourself. You had a good period of NED when you first diagnosed so I'm sure you will again. I was reading about a lady on Team Inspire who was diagnosed in 2007 and has had four recurrences but was still in good health and spirits.
Hi, thanks for reply. I should update my bio! Thanks for reminding me 🙂. Yes I had 3 1/2 years NED. I’ve since had 3 reoccurrences and taken Parps that haven’t worked. One did for 10 months before it started growing again. So in all I’ve had 2 chemos and 2 lots of tablets since first NED. When I saw onc on 1st June he ordered urgent scan which I had Tuesday. He said he would see me at end of month to make plan. He told me I’d be having more chemo a different one. I keep thinking like you, about my boys, although mine are 29, 25 and 19 still breaks me when I think or them being without me. I know I’ll never be clear from this they have told me I have to live with it and will just keep being treated. I do think if I was working it would take my mind off it but my employer said cause I’m vulnerable I would be one of the last to go back (which is good of them).
Thank you so much for your words they have lifted me. I’m painting our bedroom today it’s having a whole new look so that will keep me occupied!
Yes I think keeping busy is really helpful. I’ve been working from home but with nothing to do and have found I then ponder and read, read, read! I read something depressing and then can’t stop pondering on it 😬. I decided three weeks ago to make and deliver socially distanced cream teas to friends and family. I’ve now raised nearly a thousand pounds for cancer research! It’s been such a great distraction for me.
Also look after your body. Exercise if you can, eat healthily and get lots of sleep. Try to ensure your body is up for a fight! Take lots of care, sticky3006 x
I am sorry that you are in this situation,which I suppose most of us have been in at some time or other throughout our cancer journeys.It is hard to see the wood for the trees. It is hard for you not being at work,which I understand as you certainly miss the the company and banter etc. Nausia is really horrible,as I have had this recently myself& it is difficult to deal with. I have found peppermint tea helped with a ginger biscuit.
You will get your fight back,because you are stronger than you think,sometimes it takes a bit longer to turn things around in your head,but you will get there.
It is always more disappointing when you get a recurrence because mostly it turns up when you least expect it.
I hope that there is a solution for you very soon that you will feel happy about.
It’s easy to get down with this disease. Every time it comes back, it’s like a slap in the face.
No Chemo is a walk in the park, they are all hard on our bodies, but we must not let this deter us.
Easy to get depressed and fearful for the future.
And it’s probably good for us to plan a “what if” scenario, but better to research our chemo options and be ready to discuss theses with your oncologist.
I'm sorry to hear that you've been struggling. We’re here to support you, so please do call our Support Line on 07503 682 311 or 07493 703 967 if you’d like to talk things through.
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Hi Samjane. You rant and moan all you need to. Like you I have never been symptomatic before but I am definitely feeling aches and pains where I know some of the cancer is but it's not too bad at the moment. I was however completely blindsided by the shear extent of the recurrence throughout my abdomen and seem to be more prone to dark and negative thoughts this time round; mostly at night because my sleep us all over the place at the moment. I keep going over what if chemo doesn't work this time? Will I really have to stay at home for the whole of my treatment? What if I never get to be with my daughters again and so on? I sometimes think I snap out of it from the shear boredom of my repetitive negativity. I eventually move on from this by keeping myself busy. Fortunately I can always find something to do. I have been told the chances are the cancer will come back again (assuming this round works) but I keep telling myself I cannot give up now. I have too much to live for, people to see, places to go, weight to lose😉. I really just want to wish you all the luck and a good treatment plan as you move forward. You are not alone and you are much stronger than you think. Sending lots of hugs🤗. Jackie x
Hi Samjane I feel your pain, I am also on a third recurrence after Niraparib didn’t work for me. Looks like I will be back on the chemo treadmill again after I’ve had my next scan which I’m dreading 🙄, like you I’ve always been a fighter but after battling constant side effects from the Niraparib, neusea and constant low blood counts being the worst, for a good part of last year and this year plus this recurrence my fight is being tested🙁 I know I will somehow pick myself up and “get on with it” again as we all do but it is hard especially when you feel so rubbish and just want to shout out “give me a break”!!!
Good luck with your treatment and hope the new look bedroom gives you the lift you need😉
You have my sympathy, it’s so hard to deal emotionally with the situation I find unless I force myself to just live in today and refuse to worry about the future. So my job every day is to realise what things bring me joy and make me grateful. It’s mainly the allotment and making Scary Mary the scarecrow. And the garden and the birds when we walk round the little nature reserve down the road. These days add up to a life. The rats are the strawberries but we saw a deer. A fox got the goslings but the cygnets are thriving. We feed the fish with breadcrumbs and watch the heron . Little things but magical.
I can recommend being under trees and listening to birdsong.
I doodle little drawings which will add up to make a small book. All small things but I’ve realised what is important to me.
Going inside can be helpful and you may notice what things make you feel joy. I do hope that for you,
Your post brought tears to my eyes because the things you describe have always brought me joy but lately it’s been harder to feel them. I think like others I really miss my daughters and grandchildren. But thanks for your post.
I’m so sorry you’re having a tough time but it’s understandable. We all work hard at being positive but it’s not exactly a great scenario! Maybe you’ll be on a monthly or three weekly chemo and will have good periods of feeling well. Sending hugs.
Hi samjane! So it’s been 5yrs 6 lots of chemo / parf/ avastin etc now back on taxol 18 week’s of it! Ca is coming slowly Down but still high! Sometimes I think am I in denial ? Don’t think so , just keep trying anything and everything! Waiting for profiling results to see if they have any advantage to my next path! Bowels constantly running to toilet! Pain pop a pill lol! Today building a huge playpen in our garden for Grandaughters! My life! Every day I think of it yes every day! There was a lady on here and she kind of in a nut shell said just keep treating it as a chronic illness like many others! Hmmm she’s right but at night when you lay there next to your love one and can’t stop thinking of not being here for my kids or grandchildren it’s just heart breaking. We are all together but sometimes you can do with that one person who will listen but not give you the line of I’m sorry to hear your going through such a bad time😬 no one but my family know I’m on chemo keep it from all as I can’t bear some off there negativity but that’s me! When I’m sad I try hard and say f..k you cancer over & over it seems to bring me back! Ranting on a bit , feel your pain huni! Where in the uk are you? 😘🍷
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