Hi everyone, this is my first post. I have Invasive lobular cancer HER positive. I had surgery in April and am on the 9th day of 15 radiotherapy . I am 78 but everyone seems to be much younger. Are there any oldies like me about? While I am coping with breast cancer, my husband is coping with newly diagnosed Parkinson’s disease and dementia. I am struggling to cope with everything I am having to do for him and dealing with my cancer. In fact my cancer hardly gets a look in! The radiotherapy is fine so far, no skin problems or fatigue yet. I am lucky to have supportive friends and family but no-one in the same situation as me. I do feel very lucky that I didn’t need chemo and I don’t have young children to cope with. I do feel for all the young women who get this, and how devastating it must be. I did have womb cancer at 61 but it was caught early so I didn’t need any treatment apart from the surgery. 2023-09-04T23:00:00Zemphasised text
Oh my word! I hope you are getting support from elsewhere. At 56 myself I am grateful that I didn’t succumb last year.
My partner spent 10 months carrying a bucket around the house being constantly and spontaneously vomiting due to benign brain tumours. After multiple ops he is on the mend. In the middle of all that my Mum took ill. We were told that she had terminal cancer throughout her body. Nothing outward that I could have questioned, but other symptoms she could keep to herself. She died 6 weeks later.
At least partner is now driving locally and we have managed a 2 week holiday in the sun, which is where i discovered a lump in my breast. Turns out there’s a bunch of them. Mastectomy booked 25th Sept followed by whatever they can throw at me. I’m not going to hope it goes away if I ignore it!
Hello there Madeleine
So sorry that you’re both going through such a lot , when everything goes wrong all at once it really brings it home that life isn’t fair.
I’m younger than you - 58 but last year whilst I was undergoing radiotherapy and recovering from it I was also trying to care for my Dad who had become unwell .
I’m glad that you’re not experiencing any side effects from radiotherapy and I really hope that continues , however radiotherapy keeps working after you have finished treatment and side effects can peak about 2 weeks after . My fatigue started a couple of days after treatment was finished and lasted about 10 days but took quite a bit longer to clear up completely because I was trying to do too much ( my opinion anyway ) . If you get it you will need to rest and let your supportive family and friends help you - you may have to really spell it out to them. My family are supportive but the person who helped me most last year was actually a neighbour .
MacMillan or Maggie’s centre if you live near one may be able to advise / help you and you could try ringing the helpline to see what support might be available . You could also ask for a Social Services assessment . It won’t help either of you if you end up burned out.
I know you’re short on time but make sure at the very least that you take good care of your skin and do the post - op exercises as radiotherapy can cause fibrosis which would mean loss of flexibility and movement .
Take care
Joanne x
Hi @MadeleineX I don’t know if, at almost 68, I qualify for the age range you’re looking for 
but I have been a carer for, firstly my partner who had MND (although that was only for a year, if you get my drift) and then a carer for my beloved mother who lived with dementia. That was a long stint of many years. All I will say is that radiotherapy can hit you with fatigue quite badly. I hope it doesn’t but it would be helpful if you could ensure that you support network can step in to care for your husband if it does. There were days when my brain fog was so bad from the fatigue that I couldn’t have stumbled out of a burning building let alone care for someone with dementia. Perhaps, if you haven’t already, let your GP, social services and the Alzheimer’s Society know what you’re going through so that they can advise and possibly provide practical support.
You are going through an immensely traumatic and life changing process in being treated for cancer and you are right to ask “what about me?”. I think most of us have loved ones who think it’s all over once treatment has concluded and they expect us to “get back to normal”. It doesn’t work like that. Truthfully, no-one understands what you’re going through like those of us who have been through it too, so keep posting on here. Breast Cancer Now offer a service called Someone Like Me which is accessible via the website. It puts you in touch with those in a similar position so you may find it benefits to find someone in your age group or who is a carer to get closer to. Good luck with the rest of the radiotherapy and beyond.
Thanks for your supportive reply. The radiologists have been very supportive and offered to refer me to counselling but what I really need is help with my husband. My cancer has definitely taken second place to what he is going through. I am sorry to hear all your problems and that you have come through them.
Thanks Joanne for your support and advice. Hope you are feeling better now.
Madeleine x
Well aside from being largely confined upstairs due to Covid I’m ok thank you .
My situation was different from yours as Dad was 92 and clearly coming to the end of his life - he professed himself ready to go many times. He had outlived my Mum and his siblings plus other relatives and friends many of whom died younger than he was . He passed away peacefully from old age in April in a care home where he was well looked after for the last few months of his life. The time I spent with him over the last few years was/ is precious to me though it added to the upset of the BC and delayed me being able to process it all as well as the physical recovery.
I found the Moving Forwards course helpful for exactly that but I agree that you need practical help . Is there a Parkinson’s Nurse Specialist in your area ? You could ask your GP / your husband’s Consultant for a referral if this hasn’t been done already. I agree with @Tigress re her suggestions as well.
Your BCN should be available to you for at least 5 years so I would let them know what is going on as well. If you’re struggling with Social Services Age UK and the Independent Living Foundation keep registers of services that you could access in your area.
So sorry you’re having to deal with this now - maybe you have a family member who could help put feelers out for you as ringing round and firing off emails can be surprisingly tiring when you aren’t well yourself.
Joanne. X
Hi Madeleine, I am so sorry you are having to deal with so much. You may become fatigued towards the end of your radiotherapy and could perhaps get some help from family or friends put in place now as it could last a few weeks. I am 70 and received my BC diagnosis 3 months after major surgery (5 hour op) on my spine. It’s called Cauda Equina and I am left with permanent damage to my spinal cord. My cancer has also taken a back seat apart from my meds causing bone loss now affecting more of my spine. This was in 2019 and I have over a year left to stay on Letrozole. I’m also on supplements for osteoarthritis and osteopenia. Now also prescribed Gabapentin for disc problems in my neck.
Being older does not make things easier as you well know. You are having to cope with so many other age related issues with your husband. Please ask your GP, Cancer Nurse, hospital if there is any support available. Perhaps there is a care package that could help, even short term. Good luck and try to stay strong.
I am so sorry you have had an awful time. Pleased that your partner is better. I feel my cancer is definitely second string to everything else in my life. I will try to get some more support.
Thank you. I’m so sorry you have so much to cope with too. Not much fun getting old. I do have a supportive family but they all have their own young families so don’t have a lot of time for Mum and Dad.
I understand completely as our children have work and families and we don’t like to bother them, but on the very odd occasion we have had to ask for help, they were happy to give up an hour or two for us. Even said we don’t ask enough!
I’m grateful my spinal surgery prevented paralysis and my BC surgeries and treatment were successful so I take one day at a time to see what I CAN do, not focusing on what I can’t. That took about 2 years to accept my limitations and daily pain but I got there. I wish you all the best on your journey and sending you good vibes.
@MadeleineX children, jobs, everyday life can all get in the way when you’re hoping for practical support from your children. But then not everyone is cut out to be a carer anyway - I’m not and regret two or three incidents with Mum when I should have done much better. It is blinking tough particularly when caring for someone living with dementia so understandable if they can’t or won’t step up as much as you’d like. But that does not mean that you should have to trudge on carrying a double burden - your own cancer and your husband’s two incurable, degenerative diseases.
My advice is to have a full and frank but non-confrontational conversation with your kids. Lay out how you’re feeling, physically and emotionally. Explain your worries about what could happen to Dad if fatigue and/or lack of mobility hits you. Ask them to be honest about what they could realistically do to help. If it is not sufficient for your short to medium term contingency plans then investigate, depending on your financial situation, either a support package from social services OR sourcing private carers. Make sure the carers are experienced with dementia. Then tell your kids that you fully understand and respect their constraints but you’re going to have to spend a bit of their inheritance on professionals as you need help! Seriously though, no emotional blackmail just honesty.
Unfortunately I think we, as females are hardwired to be the ones who automatically put other’s health and wellbeing before our own. It takes a lot before we can stand up and say ‘what about me’, because we have always found a way to muddle through everything that is thrown at us. Then we are met with excuses from nearest and dearest and still end up muddling through anyway because it’s not worth the agro. I hope you do get through to your family. After all you looked after them. Now they have to help you, even if it’s with lifts, shopping, washing, the odd meal if you’re over tired.
My Dad was suffering with memory problems and a bit of low mood the last few years and sometimes it was difficult communicating but I have a young niece and even during the last weeks of his life when my brother and I couldn’t get much out of him he responded to her.
Your instinct may be to try to protect your kids and grandkids from your husband’s illness but it might well do him good to spend time with his grandkids ( who may accept his condition and the way he is more easily than you or your children ) if your family are willing to be more involved. They will most probably be waiting for you to tell them what it is you need them to do as you are their Mum and that is probably how it’s always been.
Forgive me if I’m wrong but that’s often how it is.
I just wanted to send you love and comfort.
Prayers for you and your husband.
Thank you! I really appreciate that.