I have been very lucky in that after being diagnosed with stage 3C OC, I had surgery, 6 rounds of Carboplatin/ Paclitaxol and 2 years of Olaparib, I had 4.5 years NED.
It was a massive shock to have a recurrence.
My CA 125 went up from 23 to the late hundreds in just 11 weeks.
I had a bowel blockage before my last treatment in 2019 and it was terrifying.
I feel this may occur again as chemo now a four week wait. ( I’m also in quite a bit of discomfort and can barely eat ).
On top of all this, my husband has quite advanced Dementia and Type1 diabetes.
I was told yesterday by social services that I will still have to be his carer even through chemo.
I was struggling already as he can experience poor sleep patterns, occasionally aggressive and once violent. He also wanders down by the waters edge in the middle of the night.
We have been married for 45 years and he has been the most wonderful husband.
I asked for him to have respite at night times as I won’t be able to monitor him if I’m exhausted or become poorly.
I was told no. I can only have a morning call.
I’m desperate and feel like just giving up.
Any advice would be so welcome.
Denise
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I am so sorry this has happened to you. When I was first diagnosed in 2020, stage 4, my oncologist told me I would not be able to continue being my husband’s carer and that he would have to go into a nursing home. My husband was 81 with late stage Parkinson’s and was also in a wheelchair. I was absolutely devastated and hysterical when he actually went in. I did have to arrange it all before I started my first chemotherapy. Four years later he is still there and although we had to pay it was absolutely the best decision. My husband now also has dementia but he is being ver well looked after 24/7. There is no doubt in my mind that I most definitely could not have looked after him whilst battling this horrendous disease, and I’m still here fighting for us both. Please ask your oncologist to speak up for you. I absolutely could not have cared for him, despite carers coming in to help. It has been extremely difficult us not being together but we have had to cope. There is no doubt in my mind that I would not be here if I was still looking after him and I doubt he would be here also.
I would not wish this decision on anyone, it is the most dreadful heartbreaking thing I have ever had to do, but in the end it was certainly for the best for us both and we are still here fighting!
Please feel free to message and I will help if I can, or perhaps speak to the Alzheimer’s Society or Ovacome support you will most definitely need some help and support.
My prayers for you both, the Lord moves in ways we will never understand Lx
Hi Denise, I agree with Lorene, ask your oncologist to speak up for you asap. I’m sosrry you are both going through this without the appropriate support.also get in touch either MP. consider going to the press. Really hope you get te helpful deserve. If yr in UK, make sure you are getting all the appropriate financial help too. Best wishes.
I can't imagine the pressure and worry on you, I'm just wanting to send a Hug X I hope this gets sorted so you can concentrate on getting yourself well X
Hi Denise, it sounds as though he should definitely be in somewhere that is able to provide the 24/7 care that he needs. You sound as though you cannot continue to cope either. It is a heartbreaking situation but you need to be able to concentrate on yourself. I know how hard it is trying to look after someone with dementia, you just cannot carry on as you are as it is obviously making a huge impact on your own health with all the stress dementia brings. The sooner you are able to ‘live’ without this constant stress and anxiety the better. Love and prayers Lx
I am so sorry you are going thru this I am 3B was NED 22 months my wonderful Husband was diagnosed with esophageal cancer in January I've been navigating his journey in addition to my own I swear the stress triggered my back to back recurrences. My Dad had Alzheimers so I know what your going thru I'm in the states so our care is a bit different typically we have to pay out of pocket for respite care. I will be praying for you as you navigate your Husbands care and this relentless cancer its truly not fair.
I’m so sorry both you and your husband are both going through cancer, it is unbelievably unfair and cruel and I wish you both all the very best navigating it. It’s so hard.
I honestly do believe the body pays the price for all the added stress, though my Onc doesn’t agree.
As my husband started to really deteriorate mentally and he was wandering at nights down by the local marina, the lack of sleep and anguish has been so challenging.
I’ve tried so hard to care for him, but with diabetes, even at night his alarm can go off and wake him for glucose or a bit of extra insulin and then he can’t settle again or can get angry. ( Not his old self, he was so placid and kind ).
From the time things worsened, so my very stable CA 125 started rising.
There is no blame on him whatsoever ( as with your dear husband); they don’t choose to become poorly ).
It’s just the stress is horrendous.
Just praying I can get some support this week, even if it takes every bit of my small amount of savings.
It didn’t help that the Social Worker initially made me feel guilty for asking ).
Thank you so much it is hard as you know navigating your own journey plus a beloved spouse.
I totally agree stress triggers cancer and recurrences as it slams ones immune system and cortisol goes crazy they've actually proven with breast cancer survivors being diagnosed after a very stressful life event.
Its so hard to watch someone that you love deteriorating in front of your eyes bits of them being lost. My Dad got out of the house my Mom found him the backyard its very scary I did get her a set of baby monitors as she slept in a different room as they were in their 80's at that time we moved my Dad to a nursing home as my Mom was not sleeping. They do get angry part of the disease hard to not take it personal.
That's how my recurrence surfaced my CA125 shot from 15 to 500 in 3 months time I'm on my second set of treatments Pet Scan was clear CA125 in the teen's started going up again I know its the stress I do believe that.
I pray that you can get some assistance I'm not familiar with the NHS healthcare hoping you can get a compassionate social worker to give you some respite relief. I'll be praying for you! Hugs from Chicago
Thank you so, so much, it helps that you understand the dementia sadness and the shock of such a fast CA125 increase, though I wish you hadn’t had to go through either. I’m sure the rise is stress related partly.
Social Workers here are just not listening tbh.
Thank you for the hugs from Chicago, sending hugs back from Bristol, UK xxxxx
My heart goes out to you. Email directly to your head onc and MP and ask them to write urgently to the head of your social services and say your husband must be found a place for 24 hour care while you are going through treatment. Or lots of help at home, if that is your preference. Do you have any family members \ friends to help you with this ? Perhaps the organisers of this website or Macmillan can help you with this task. Sounds like your social services person has gone power crazy. I hope you rapidly find help. Love, Emma xx
Dear Denise, please do not call but send a marked urgent email not to your CNS but to the pa of your head of onc. Or, if you see the same onc each time, then their p.a. You can call to get their P.A's email. With a call you have no evidence. and you need evidence in this case.
I would c,c, it to your MP as well. Let me know how it goes, Emma xx
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