Hello all, hope everyone is well as can be and coping well? I feel bad for writing this post as seems as though I only post when I need to know something and not replying to anyone else! that's because I'm still relatively new to this as I'm supporting my wife who's going through this experience hence maybe in a years time I might be a bit more "qualified" to reply to others if that's ok?
So I've been looking after my wife with the help of our 2 teenage children since 25th Feb when she 1st went into hospital for the initial investigations. She's been doing remarkably well with her CA125 reducing from 1800ish to 500 and last week had her 3rd chemo session which has hit her hard this week.
Feeling very emotional, losing her hair, sometimes feeling irritable, tired, aches and pains.
I too am starting to feel tired and worn out but I know I can't go down that slippery slope as I need to get us through this. The question I have may sound a tad selfish....I feel that we have lost some "connection", in my mind I feel like I've become just a "carer" as I'm not feeling the love from my wife which I miss dearly, I know ....this sounds very harsh, but I have to remind myself the roller coaster of feelings and emotions she is going through yet alone the shock of being diagnosed with cancer, i feel that I'm noticing more and more t.v programs,stories,social media posts about cancer and to be honest sometimes I just can't face them.
So the question is, are all of these feelings normal?
Please don’t feel bad... this is such a shock for most patients and relatives to cope with and it sounds like you are doing an amazing job!
I remember my husband going into nursey mode... it used to drive me mad after I had finished treatment and wanted to be independent. But boy there were times when someone checking up on you is just so reassuring!
I suggested to my family that they got some support for friends and carers from Macmillan...there’s a number on the website... you can just call up and talk to someone who completely gets it and can explain what’s available for you.
It may just be a way to have a little time for yourself...
And don’t forget, this phase will come to an end and your wife will soon be talking her own independent steps. Hang on in there! xx
Hi, It will all come back. Even though I knew I was going to lose my hair, when it happened, I was devastated. And then, I recently lost my eyebrows and eyelashes. Aches and pains I could deal with, looking in the mirror without my hat and make-up is really hard. But, I have now completed chemo and am on Avastin. And, I feel back to normal (well I will when my hair grows back). Its all very emotional, and even now I still have my wobbly days, but things do get better. Jan. x.
Hi. Do not feel bad about asking questions, that's what we're all here for. My husband's been a marvellous support for me. I've had 2 bouts of OC, both needing 6 months of chemo to get me back on track. As Jan (above) said you really feel a freak when you lose your eyebrows - they're the last to go, thank goodness but also, thankfully, the first to return.
It all takes adjusting to by all the family. Fortunately, our 2 children had both left home & leading their own lives when my OC arrived, so they've been mercifully only connected at a distance.
Your wife really can't help the way she's feeling and she'll no doubt need you to help her quite a lot. But I can tell you understand that. Life will return but it will never be exactly the same. The answer to your question is yes, I'm sure that what you're feeling is perfectly normal. Just take it a day at a time. Best wishes. Pauline.
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Thank you Pauline
Hello!
I think we all recognise those feelings both of you are experiencing. I often feel angry and frustrated about not being so strong anymore. I feel I am a ‘patient ‘ and my family are carer’s.
It was worse the 1st time around, this time I recognise what is happening! As Dexta said previously the loss of hair eyebrows etc is a lot to cope with emotionally as well as unexplained aches and itches.
My husband worries but does not express his fears, then I worry about Him.
His best advice to me when I feel awful is ‘it’s not poison...... it’s LIFE!’ He makes me smile and I go on another day.
I personally found Chemo 3 & 4 the worst both times. Now I am on Niraparib and doing OK.
So better times will come, you are still the same people and loving family, just living in strange and uncertain times.
Best wishes, stay strong.
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Thank you Bernibear , and yes we're the same I don't always express my feelings as I don't want to worry my wife,stiff upper lip and all if that.lol
Hi. I agree with everything the others have said. Your wife is in survival mode and sometimes it doesn’t leave room for other feelings but it will pass. My husband was a tremendous support but I also didn’t like seeing him as my “career”. But I needed him at the same time. After chemo we went through an adjustment as I wanted to feel more normal and do things for myself. If you could get in a support group or get counseling it would really help. And the same for her. It’s also important to reassure her that you still find her attractive even though she may not seem to believe you! It will get better in a few months.
Hi, I think you are very brave to express these feelings so honestly and have often thought that partners of people with any kind of cancer, are in a very unenviable position. I believe being in a supportive role is very hard and many can feel helpless and unsure how is the right way to behave.
As the patient, we know that the treatment is helping to get rid of the disease and most of the attention is focused on us. I agree that speaking to someone at Macmillan or similar organisations, would enable you to share your experience of what is an unfamiliar situation for both you and your wife. Also try not to watch stuff about cancer on TV or you will feel overwhelmed. I ration myself to one news bulletin daily, otherwise I feel overwhelmed by stuff on Covid19.
Hope you will manage to get some support and that things will gradually improve.
After reading your post this morning I thought I’d ask my husband his thoughts after going through this with me since March 2019. He also was there for me through my recovery and chemo hospitalizations and now maintenance infusions. While I was at my lowest all I really wanted sometimes was to give him a long hug to show him how much I loved him. His reply to my question was to ‘try your hardest to care for her even when you feel taxed. She needs you to be her rock. Know she loves you but can’t show it the way she used to. Find little moments to fill the void.’
Funny thing (or not so funny) is that my husband was then diagnosed with colon cancer in December 2019 and our rolls were reversed; me becoming his caretaker after surgery. It is a hard job caring for someone in pain but you just put yourself in their place and know they need to see your strength and caring to pull through.
You sound like a loving, caring man. Be strong for her, take some time for yourself if you can (and don’t feel guilty about it) and be patient. It will get better.
Hi Sounds to me that what you are feeling and noticing is perfectly normal in the circumstances and as I have just commented on another post this disease is also tough on on loved ones. would you consider talking to someone, a counsellor? They will be able to help you talk about your feelings and give you the 'tools' to manage and therefore understand whats going on. Trust me it helps xx Big hug to you and your family xx
Yes, do you have any hobbies. Some times my husband would take off go to the airplane hanger and vent to the guys. It's normal to sometimes distance yourself from the ones we love. It makes it easier. I know I felt I had to be strong for everyone. Just sit down and talk to your wife. See if maybe a friend could come bye from time to time. I shaved my hair. It was hard watching it thin and looked aweful. I wore baseball caps. Best wishes, Liz
Oh my goodness please do not underestimate the support you will be providing. My husband has always been the glass half full kind of person which has been great for me since my diagnosis in 2018. I could not have coped were it not for him constantly boosting me along the way. I am currently on my second round of chemo and to be honest I think we are both fed up of it all now. I can see him starting to run out of energy so it is really important to look after yourself as well as your wife. Life is such a rollercoaster so be prepared for many ups and downs. You will find a lot of support on this group whenever you need it. Take care
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