Once again I just felt compelled to write a few lines. That usually happens when things are getting a bit tricky. Best get it off my chest right? My wife started back on treatment at the beginning of December (5th line), with Carbo/Caylex combo. We have had Carbo a few times over the last 10 years, Caylex was a bit of an unknown. If we have learnt anything on this journey, its that cancer treatment and its effects vary hugely from person to person. Whilst there seem to be more common side effects than others, its still a bit of a lottery. It is good that they have control of the drugs on a sliding scale and can decrease doses if needs be.
Well its seems to me that Caylex is a bit of a nasty one. Its really knocked my wife for six over the three cycles that we have had so far. Well I say three, the consultant decided not to go ahead with number 3 and has given her an extra 2 week break before we proceed. The pain in her side has been pretty epic (anything that you compare to a contraction has got to be bad right?), and she has this unusual thing where she has started to generate excess saliva. This constant dribbling is like a form or torture! Believe me, I have never seen anything like it. Injection and patches have not done the trick either. Her CA125 has come down over the first few treatments 950/650/450 roughly, so I guess that's good. The consultant thinks that we will end up dropping the Caylex, not even convinced she will try reducing the dose first. I guess we will see. She has lost over 1 stone in the last 6 weeks, that worries me.
OK, the next comment is so unscientific but I am going to say it anyway; My wife just looks so ill. We have been on such a journey over the last 10 years, I thought I had seen her at her lowest. These last 6 weeks have really taken her to a new low-point. He skin is grey, she has lost all that weight and her eyes look sunken and vacant. It scares me so much. Bless her, I feel so helpless. It kills me to see her suffering like she is. We have bounced back so many times, I cant help but think its all starting to take its toll now. Could really do with some good news for a change, its been so tough for everybody. I try my hardest to work all day, shop, cook and clean but feel like I am constantly falling short. Each day is a blessing, and I know that at sometime in the future I will reflect on all this with a bursting heart and good memories. Just feeling a bit low and helpless. Oh and scared. Very, very scared.
Much love and admiration to you all, your stories keep me strong.
Xx
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SuperHubby24
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It may be that the Caelyx just doesn’t suit her, and a different regime will bring her back to a more healthy space.
It must be very hard for you, not just the worry and the stress but keeping everything together must be so very difficult. Maybe consider getting a cleaner to do the housework so you don’t also have to do that.
I sometimes think it harder for those close in our circle than for us. I am sure you feel you should be able to take the bad stuff away. However, by just being there and caring you contribute such a lot. The fact that you also do the practical bit is a bonus. Well done you. Still a hard time for both of you.
If the weight loss is a real problem then I would encourage you to get her to the GP and obtain some high calorie foodstuffs (Fortisip 2 cal and the like) so she does not continue to lose weight and does not have to force herself to eat bulky stuff to put some weight back on.
I lost both my parents to cancer and remember well the feeling of helplessness when you see your loved ones suffering
But you have been by her side for the last ten years supporting her and hopefully will be for many more
I have not had calyx so cannot comment but the ca count is dropping which is a good sign
Hopefully once chemo is finished she will start to regain her strength I lost two and half stone when first went on chemo found the liquid nutrient drinks I could manage my daughter used to mix them with a little fruit and ice cream in a blender which made them more palatable
I only wish I could give you some wonderful insight or news to turn around your situation. You are doing brilliantly. I think your honesty and heartfelt openness are inspiring. Keep doing what you're doing and I sincerely hope your wife is feeling stronger soon.
Just got back in the office from a trip to the hospital to pick up a prescription for my wife. I think the Oncology nurses clocked the state of me straight away. An hour and a half later, after a very impromptu 'counselling session' I feel ten times better than when I walked in there. Getting back and seeing your lovely message was just the icing on the cake. Its tough for everybody that are dealing with this terrible disease. Its just nice to hear/read sometimes that you are 'doing a great job' because sometimes when you are so deeply imbedded with the day to day challenges, you forget that.
You have all made me feel so much better (about myself), but also about pushing through this particularly tough time we are going through. Thank you, thank you all.
I got really choked up reading your comments, and in work time too! See what you lovely ladies do to me XXxx
Glad to hear that you are feeling a bit better and sorry to hear that your wife is feeling so unwell at the moment. Definitely consider getting a cleaner in, it helps take some of the pressure off.
Paula xxxx
Over the years there have been a fair few husbands/partners/you name it on here, but so few relative to our numbers.
I suspect you express what many of them feel at times.
It's great you got some timely support and feel supported by us here too.
You're so right that individuals react individually to drugs, but those do sound unusual from my understanding and experience of Caelyx which tends to be drying.
Is everyone absolutely positive there isn't something else going on at the same time to make her so ill... a kidney stone, for instance?
Yes, a cleaner, or learn to live with a bit more dust.
Hang on in there, you're doing brilliantly x
Hi Superhubby and to me and obviously to your wife, you are a superhero. It is hard trying to keep everything going. As some one suggested, could you get in home help one or two days a week even just for a few hours. It would take the pressure off you a little. I am glad the nurses were perceptive enough to realise you were stressed and its great you are now in a better head space. It cant be easy. Wish my hubby was like you but he he is not but I have learned to accept that. About the Caelyx I have never had it, some people fly through it by all accounts and other find it difficult. Do ask to see if they would consider reducing the dose. If your wife is not eating much of course she will lose weight so perhaps the Fortesip drinks might suit her better, The Onc nurses can tell you where to get these or perhaps if you have any health nurse calling in, she will sort it for you. Having said that I normally lose weight when on chemo, The 125 is dropping so that is good, so for now make sure your wife has plenty of fluid and small meals more often in preference to 3 meals a day. Let us know how you are getting on,
I’m sure your wife appreciates all you are doing for her and think you should pay yourself on the back. You’re not superman and it’s very tough on you too. It’s hard to watch what’s happening and feel so helpless in being unable to control any of it. Be kind to yourself.
Can I just say you are doing an amazing job, it can be very difficult as a carer, it takes a very special person, my husband is one and you are a goodun too.
Don’t beat yourself up, you are doing all you have to do and 10 years must be hard.
I am 3 years out Ned and couldn’t wish more than you are giving. I looked grey, ill on my last legs, but rallied, so don’t give up, surprising what we can back from.
I wanted to cry reading your original post. Im on here due to my mum's illness after her diagnosis last year. So many days its so painful not being able to just eradicate this whole lousy thing from our lives and get back to how things were before Diagnosis Day. I dont begin to imagine I know or fully understand what my mum is going through - the shock, the pain, the lack of recovery time before the relentless treatment kicks off again, and the very real fear you mentioned - but I do know that just being there (even though we live hours apart), supporting her through treatment, finding out all I can about this pesky disease, or just talking nonsense about complete rubbish when thats whats needed, does make a difference. Even on days where i dont feel it does. And im sure what youre doing does too so dont beat yourself up. I'm glad you have this forum to come to. Glad i found it too.
Hi SuperHubby. My heart aches for what you guys are going through and i don’t have much in the way of advice.... but i did feel compelled to reply just to say, my god you are amazing. What an absolute champion of a human being you are. And please don’t think “it’s what anyone would do”’ because I can assure you, speaking from very recent experience, it’s not. Some people cannot face their own fears on these situations and simply take flight. Yet here you are, brave and strong and wonderful. You are both so blessed to have each other and I am so sorry you are feeling scared but don’t EVER think you are falling short. On the contrary, by your very actions you can hold your head high every single day. Please be kind to yourself and try to look after out for you during this time as well. You have all my admiration. Xx
Dear Superhubby, OMG! You are a champion. If you could only understand what we wives feel when we see you boys doing the washing, the cleaning and cooking, all the household stuff. My poor husband is doing everything mostly these days and I love him so much because of it. Your wife is on this crazy journey and you are both lucky to have each other. I really appreciate how scared you are and you have every right to express and let us hear your words. It is best to get it off your chest. I just wanted to say that you are an incredible human being and extraordinary to be able to say the things that I am sure my husband can’t tell me. I will look at him with more appreciation knowing what he is feeling. Thanks Sharon
Superhub24, Hey there! This forum is a terrific place, but it may be even more helpful if you can talk with a counselor one to one and perhaps meet others in the same position and chat in person.
Husbands/Partners have a uniquely stressful/painful position in this battle. For your own good health and knowing that your dear wife wants YOU to take good care of yourself, make time to put yourself first for a bit of time each day.
My husband helped save me. Without his love and support I would not be typing to you now. Know that your burden does not go unnoticed or unappreciated. I am in US, so cannot recommend anything specific for you. A soft, gentle, caring hug to you dearest man.
I always look really awful on treatment. Bags under my eyes with grey skin and bright red cheeks. It’s a poison so it has to be evident somewhere. Once it’s out of your system then you do pick up but never look entirely the same. If we look not so good imagine how the aliens look and they are the target.
I’m interested by your thoughts on Caelyx as that’s on my list
So pleased that the Oncology nurses spotted you. You ARE doing a great job!! Keep strong! 🙂 I found jelly was really good when I couldn't eat much, as it's largely water. Remember to talk to your GP - ask for a home visit - why not? The human body (& spirit) are amazingly strong & resilient but sometimes there is a key/turning point....maybe just seeing some sunshine or natural beauty (even on the TV) may help? Sending love across the air waves, Linda xx 🌷
It's heart breaking watching those we love suffer.There are times when it all seems just too much but be strong you are doing amazing. Everything you do makes a difference.
I agree with what everyone has said. Goodness only knows where I would be without my own superhuman hubby. It really is through times like these that love and character is tested.
On a very practical level though does your wife receive all the benefits she is entitled to? I use my enhanced PIP benefit to make our lives a little easier such as employing a cleaning lady, buying a scooter and having our groceries delivered. My local Citizens Advice Bureau have advice workers who help specifically help people with cancer and they filled the forms in for me. I am sure this made all the difference.
I think what you're doing is very appreciative. . My husband tends to go into denial. I have to rely on friends. It makes me feel bad. Your wife is truly blessed. Keep up the great work. Liz
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19 Years & we are here.
