Support through treatment.

[Frenchhouse3]

Hi everyone,

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

[Lirene]

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

[Frenchhouse3 in reply to Lirene]

Hi Lirene,

I’m so sorry this has happened to you both but so glad you’re both doing well and still fighting!

I too would be heartbroken on us not being together but I feel at least I could visit him every day and be like his wife and friend again.

I really just cannot manage him with the diabetes as well as he needs such close monitoring.

I have just found him downstairs trying to microwave soup as he thought he hadn’t eaten dinner. 1.45 am )

How will I cope when I’m wiped by the chemo? What if I hadn’t woken and he’d burnt himself?

I will ask my Onc nurse to speak to the Oncologist about him.

When I saw him on Thursday, I believed my husband was going to have nighttime care while I was undergoing treatment.

On the Friday morning, I was given an emphatic no.

Thank you so much for replying, I’ll keep you posted as soon as I speak to the nurse.

With all good wishes for the good health of you both

Denise xxxxx

[Katmal-UK]

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.

[Frenchhouse3 in reply to Katmal-UK]

Hi Kathy,

Thank you for replying.

I feel at my wit’s end.

I’m barely able to cope now, let alone when I’m having chemo.

My bowel is blocking again and I can barely eat, so feeling incredibly weak.

I will contact my MP by email today and the Oncologist on Monday.

Kindest regards

Denise xxxxx ( I’m in UK )

[Katmal-UK in reply to Frenchhouse3]

Good Luck, I sincerely hope you get the help you need x

[Frenchhouse3 in reply to Katmal-UK]

Thank you, I’ll try and keep you updated.

Denise X

[Newbery3]

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

[Frenchhouse3 in reply to Newbery3]

Thank you so much!

I just hoped I wouldn’t have relapse whilst I was still caring for him.

I feel completely at sea.

Thank Heavens for this wonderful site and you lovely ladies who really hear me xxxxxxxxxx

[Lirene]

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

[Saintgermain]

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.

[Frenchhouse3 in reply to Saintgermain]

Hi there Saintgermain,

Thank you for your kind reply.

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 ).

Wishing you both all the very best xxxxx

[Saintgermain in reply to Frenchhouse3]

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

[Frenchhouse3 in reply to Saintgermain]

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

[Trickysite]

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

[Frenchhouse3 in reply to Trickysite]

Hi Emma,

Thank you so much for replying.

I’ll call my Onc. nurse tomorrow and request this and also send our local MP an email.

Ideally, I would like him to have full care whist in treatment or night care with a couple of home calls during the day.

All I was offered at present was a morning call!

I’m so shocked that they could expect me to be a full time carer in chemo!

It’s unbelievable isn’t it?

I’ll keep you posted.

Kindest regards

Denise xxxxx

[Trickysite in reply to Frenchhouse3]

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

[Frenchhouse3 in reply to Trickysite]

Ah, right, I will take your advice!

Thank you Emma! I will let you know! Xxxxx

[Leniko]

praying for You and your Husband! ❤️🙏

[Frenchhouse3]

Thank you so much xxxxx

[OvacomeSupport Partner My Ovacome Team]

Hello Frenchhouse3,

Thank you very much for your message. I am so sorry to read how difficult things have been and how desperate you have been feeling. I can see that you have had many supportive messages from members of our community which I hope have been helpful.

I just wanted to send you a message to let you know that we are here if you would like to talk things through. We can also help you to find the support and information that you need at this time. If you would like to arrange a call at a time that is convenient for you, you can let us know by messaging us on the forum using the chat function or by emailing [e-mail]. Alternatively our support line is available Monday - Friday 10am - 5pm on 0800 008 7054.

Take care,

Cathryn - Ovacome Support

[Frenchhouse3 in reply to OvacomeSupport]

Hi there,

Thank you to everyone who kindly responded to my post and offered advice.

I had to take my husband to A&E last Monday afternoon with suspected Ketosis.

Whilst waiting for the Social Worker to reply ( I was told by 11 o’clock in the morning ) she eventually called me at 4 and told me to tell the staff in A&E that I couldn’t have him home as I felt unsafe and have cancer. ( He had been aggressive towards me the previous night again due to high sugar levels exacerbating his Dementia and I had to phone the emergency line ).

I did so and they were reluctant but did help me.

The pain and confusion in my darling husband’s eyes as I left him will haunt me forever.

I almost took him home but I knew after so much lack of sleep and the discomfort from the cancer that I couldn’t go on.

The next morning he had been moved to a ward and was seen by the hospital psychiatrist and mental health team.

They said his Dementia was very advanced and that I had done the right thing. The psychiatrist couldn’t believe I had managed him on my own for so long.

She said he would need permanent care.

She told me I’d done my best for him.

He has since been in hospital waiting to be transitioned into a care home ( I have visited the one his brother is in locally and the lovely manager there has agreed to assess him and hopefully accommodate him. He’ll be near to home.

Next problem is that North Somerset where we live have closed his case and left him to the hospital to deal with. They normally allocate in Bristol, not N. Somerset.

Hopefully, tomorrow will bring news of his transition.

My husband has worked hard all his life, never took sick leave if he could possibly help it.

I know all our services are at breaking point.

He is just 66; he deserves better.

All the while, I’m trying to deal with this unexpected recurrence.

Thank you all for your support, it literally has saved me.

Denise xxxxx

[Lirene]

Bless you Denise, I fully understand your pain. Having the person you love in hospital and thereafter in a care/nursing home because you are no longer able to care for them is the most horrendous experience.

You will, as I do, experience the ‘guilt’ as you can no longer care for the person you have loved and looked after for the majority of your life. You will feel guilty, but please try not to, your husband will adapt and will be safe and well cared for, you in turn will ‘learn your new normal’ and hopefully you will be able to concentrate on doing the best for yourself, and find the way through your treatment without the excessive stress and pressure you have been under.

Be under no illusion it will be very difficult leaving him in the care home every time you visit, he may cry and plead for you to take him home and this will tear at your heart strings-but you cannot go back to how things were. When you get home from visiting try and occupy your mind on something else instead of crying and screaming about the total unfairness of your situation. It is not your fault and neither your husbands, none of you asked to get these horrific diseases but you still do have each other albeit ‘together but apart’.

I am so very sorry this has happened to you both, keep strong not only for yourself but also for your husband as he makes his way through his ‘new life’.

My heart is full of sorrow for you. If I can help, please reach out. Never forget our Lord loves and cares for you both and he works in the most mysterious ways that at the time we don’t always understand Lx

[Frenchhouse3 in reply to Lirene]

Hi Lirene,

Thank you once again for taking the time to reply to me.

Everything you say is so true, the guilt and pain at not being able to care for our loved ones is immense and yet you get to a point that you physically and mentally can’t do it anymore.

Geoff was become aggressive too and I was very scared at night. He was such a gentle person by nature, I even feel I’m betraying him admitting to this.

He’s been fairly calm at the hospital though this may well change in the care home.

I’m really hoping he’ll get into the one near me who have said they have space for him.

North Somerset Services have actually closed his case as they have said the hospital social worker will have to deal with him now, yet he’ll be a North Somerset resident when he arrives at his designated home!

Thanks again for your support

Denise xxxxx

[georgiageorgia182]

Hi Denise - I just wanted to send you so so much love. What a wonderful wife you have clearly been to your husband to care for him for with advanced dementia whilst being ill yourself - you should be so proud of yourself. Sending all the love in the world as you work through this adjustment period of no longer living with him, and hoping that your treatment goes easy on you. xxxxx

[Frenchhouse3]

Thank you so much for you kind words Georgia, this means so much to me. I will re-read each time the guilt gets a grip on me.

Denise xxxxx