We have been told that my wife will need to start another course of Chemo in about 8 weeks time. We had this news a couple of weeks ago, and the notion of hopping back onto the merry-go-round has been permeating through me, simmering and stewing. We have had a fairly stable 18 months - 2 years being propped up by Letrozole and Avastin which on the face of it was doing its job pretty well. However, my wife had lost over a third of her kidney function due to the 'maintenance' drugs and was advised/told to stop, to give her the best possible chance of having effective chemo in the future. Her CA125 count has crept up and up, and sure enough chemo will start in about 8 weeks or so. A huge part of me thinks that the consultant just wants to let us have the rest of the summer drug/treatment free before we plough headlong into it again (but that's just my theory). I guess the point of my update is to try to express my feelings about this. We came back from holiday in Spain to the news that treatment would be starting again. Numb. I just felt numb. When I look back on our experiences over the last 9 years, I recall it in chapters. Each chapter having highs, and often very low low's. The trouble is you forget just how gruelling it is for everybody involved when it starts over again. Call it fear of the unknown if you will. We have not really spoken about it much at all, but since we were told, I have done nothing but think about how it may play out. I can't remember the combination of drugs for this next round, but we have been told that my wife will not lose her hair. That's good. I am one of these 'my head hits the pillow, and I am asleep in 2 mins' sort of guys. I have not been sleeping well recently. Usually, I am positive and enthusiastic at work and around friends and family. I can feel myself withdrawing and becoming more despondent. My wife usually embarks on a massive purge around the house prior to treatment. All the cupboards and wardrobes have a refresh, spruce up and tidy. That's started already. I think its born out of her need to make sure that 'everything is neat and in order' before treatment starts. You can set your watch by this! She does it every single time. I do understand why. I feel anxious and nervous about what lies ahead, as I am sure that you all have (and are), when embarking on a new path on your own journeys. I have flashes of the 'its not fair' and 'why us?' whizzing past my eyes, I have not felt like that for a long time. Once again my thoughts turn to how 'unfair' it is that we have to deal with this over and over again. How cheated I feel for being robbed of so many things. However, my mantra has been the same from the very beginning; 'Bad things happen to good people'.
I find myself in limbo at the moment, what I should be doing is enjoying the next 8 weeks with my wife and family. Filling the days, making memories. However, I fear that the anticipation of what's coming, is starting to get the upper hand at the moment. 'Make the most of it', 'be positive', 'live for the now' - Easy to say, but very difficult to do. So, is the glass half full or half empty? Well that seems to depend on things a trivial as 'which side of the bed I got out of this morning' and 'whichever way the wind blows'. In other words its up to me/us how we feel. I am desperately trying to get back into the groove with a positive attitude and mind-set. It's difficult though, isn't it? Much Love to you all..........
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SuperHubby24
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I think you just have to go with your feelings at a time like this - there will be a grieving phase when there's word of new chemo, and you just have to ride it out. In among all this there will be good and enjoyable and quite normal moments. However we perceive these moments, they all pass, and I think there's nothing for it but to concentrate on the window where you are and the day you are in. July was such a processing time for me and my husband, as I was told I needed to start treatment for my first recurrence, and it threw us into a bit of turmoil. Now I am started, we have made enjoyable plans for various stages through the 6 cycles, and I am focused on this part of the journey only. Not easy, but hang on in there. You can't be positive all the time and it would be unrealistic to be so. But enjoy the happy days when they pop up.
Hi..... it's flaming hard to remain positive, to see the glass half-full. Just take the good days when they come and work through the rough ones. Not sure there is a right or wrong way to deal with a recurrence, I just know that it's a blow that send you reeling. I'm 4 years in remission this month and keep waiting for the axe to fall......., my longest (first remission) was nearly four and a half years so I keep thinking 'any day now'. Hate this disease with all my being. Hope you make those memories in the next 8 weeks with many more to come after chemo has finished. xx Kathy xx
I started chemo again in June. after having chemo last year, finishing in March 2016. Couldn't believe the aliens were making camp again, haven't they had enough holidays. However I'm having Carbo only, which seems to be quite a common choice for platinum sensitive recurrence. I have poor kidney function since treatment in 2012, however drinking plenty on chemo day and the two days after has helped. My kidney function has remained the same on this treatment, where it fell a lot last time.
We are making memories all the time, and recording them. Revamped our wills and planned for the day that we don't want but is inevitable, then it's not a cloud over us and we can crack on with having some fun. I want to go to Madrid for our anniversary which fortunately falls in a good chemo week, but if I'm not well enough we shall head to Brighton.
I inadvertently bought tickets to see Sarah Millican in November 2018! So have to get to see that. Life is what you make it, the glass is neither half full or half empty, it is life, Top it up when you can drink from it when you need to.
Love her for every moment, tomorrow is promised to nobody, whether you have cancer or not
Love this comment, LA, especially, "Love her for every moment, tomorrow is promised to nobody, whether you have cancer or not." It brought a tear to my eye.
I'm so sorry you have to do all this again, your wife is doing what she needs to do doing all the cleaning and tidying, it's a sort of coping mechanism, bit like when pregnant we clean everything that comes close or stands still long enough.
Your name is right, you are a super hubby, all the people who support us are super humans, we recently had a conversation on here about how our support needs support too. It's so true, who supports the supporter? The health care system is set up to help the patient and rightly so but there's also a wider circle of people who are also affected by our disease, maybe you could benefit from some counselling. All you wonderful people who help us through the treatment and it's effects are tremendous and invaluable to us and whilst we could do it all without you your support make it so very much easier for us along the way so thank you.
We've all done the why us bit and there's no answer to it but you've beaten this previously and together you can do it again. You've already found an upside to the latest treatment in that she won't lose her hair, your positivity is in there somewhere and I'm sure it will come back when the treatment begins. You're currently in limbo, once the treatment starts and you are actively fighting this barsteward disease you can round up the troops and show it who's boss. I'm sure you'll feel less helpless then.
They're letting you enjoy the rest of our lovely summer ☔️💨⛈🌤😬😂 before the next phase starts so try to enjoy it together and have some fun times you can reflect back on during the autumn and winter yet to come.
None of us know what's ahead so try to enjoy the now, we are all here for you should you need to have a rant or a cry or a laugh, use us, it's why we're here.
Sending you both big hugs and best wishes ❤️Xx Jane
Thanks Jane, what a lovely reply. Your sarcasm about our lovely Summer is not wasted on me Lol. I am usually all over this, but perhaps I am just a bit winded by this latest news. Need to get my Mojo back and quick!!! It is such a massive help being able to post/reply/like on here. I find it a real comfort. I have not really told anybody what's coming, perhaps that's why I have felt the way I have? I usually chat to family and friends, but for a few reasons have not done so this time. Anyway, thank you. Jim Xx
Ah Super Hubby, you do sound super...but please don't tell my husband that your wife goes into a cleaning frenzy before chemo, or else it will set his expectations unrealistically high
I hope you find your mojo again very soon. Maybe your wife will find it as she tidies the house?!
Sending a hug from one soon-to-be-on-chemo, to the husband of one in the same situation.
Hi there I think your feelings are normal. We never know what to expect with this illness. May I suggest you see if you can find a support group in Macmillan for husbands. It might help you to speak to some one independent of all this. There is a group for husbands on line I can try and find it for you. It's linked to Ovarian Cancer UK. It's also private
Since everyone else seems to have said it all, can I just say what an amazingly beautifully-written post yours is. And thank you for taking the time to share your feelings - we probably don't hear enough from 'careers' because they're too busy being rocks for their 'carees'. Deb x
I am so sorry for you super hubby24. I believe that your words are mirroring my husbands words, thoughts and feelings. In the last year I have had chemo radiation and I have just arrived home from a second dose of Caelyx and carboplatin. It isn't fair and it seems by the photo that the two of you are so young with so much ahead of you. I am in my fifties and I believe I have had a wonderful life. It is alright to express your feelings and you have done a great job of telling us your frustration and anger and anxiety. Good on you. Your wife is doing exactly what I do. Cleaning up her home being in control of the one thing she can control because we don't have control of this insidious disease. I know she wants to organize things so you don't have to. It her way of looking after you. I see a wonderful counsellor and I go with my husband. I am wondering if you aren't seeing someone then consider going together to see a professional. It really helps us and I feel so much lighter after my sessions. It will give you some prospective. Thank you once again for giving us the other side of this. Much love to you and your wonderful wife. Sharon
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Signing a form to agree that the chemo only palliates the disease
Ca125 rising on caelyx
HIGH GRADE SEROUS OVARIAN CANCER
Ovarian cancer has recurred for the third time. Chemo and/or alternative treatments?
