Breast cancer for the under-50s

Breast cancer is far less common in the under-50s, but this can leave younger people with a diagnosis feeling isolated. This group is a place for them to come together, share experiences and support each other.

Asking for help doesn’t show weakness

swordsman1969
Posted by

Asking for help doesn’t show weakness

I am not a writer, doctor or psychiatrist and am usually a very private man, but I would like to share a story in the hope that others may learn from it.

Back in February 2017 my 35-year-old partner and mother of two wonderful girls Lisa, was diagnosed with Breast Cancer.

After the initial horror and shock had subsided, Lisa and I informed family and friends and we started her battle together. Some people appeared to avoid us after the announcement and eventually even some family members became strangers.

I had quite recently been promoted again at work to a position assisting with the oversight of a huge new expansion programme. I loved it due to its unique challenges and opportunities along with the chance to help shape the departments future, making a real difference and having immense job satisfaction. I was good at my job which was easy because I loved it and was often used as an example of the benefits in being an apprentice in leadership.

My lesson

With Lisa’ life changing diagnosis, I was convinced that I would always have to be the strong one, not only when I was with Lisa and the children, but with others too. At the outset, a couple of my Managers asked if I was ok and said I could talk to them if I needed, but I was afraid that if I reached out and talked to anyone about all the fears and scenarios that were flashing around in my head, it would show weakness and a loss of self-control, I was worried I would not be able to regain my posture.

I thought I was able to single handily deal with supporting Lisa as her lovely long hair was found each morning on the pillow or after a bath, the sickness, the extra work at home due to her being exhausted all the time, providing transport and mental support for her Surgery days, Chemotherapy and daily Radiotherapy, yet still be the best I could be at work with the exciting new challenges I faced daily.

I was constantly having to explain as carefully as possible, without scaring my 4 and 8-year-old daughters, the reasons why mummy was so tired all the time, why she had to cut her hair, why they had to be quiet so she could sleep, why they couldn’t have certain foods because the smell turned mummies stomach so much. The questions and pressure just kept coming as much needed sleep got less and less.

 

To my regret, it turned out that ‘not talking’ to someone, asking for help, advice, or just plain sharing my fears with someone meant I had no release from the pressure. Instead, I started to allow things that may otherwise have been classed as minor things, build up over an eight-month period into what then seemed an untenable situation.

I threw myself harder into work even on my days off as a way of trying to blank out the way I was feeling and just push through. This all came to a head one evening when I came home, made tea, did homework with my girls, cleared the table and then spread diagrams and copies of e-mails all over the table to do a work task that could have been achieved at work the following day.

That night Lisa brought things to a head and forced me to talk, it became a very long night of truth and tears. It made me admit that although I was able to maintain my posture at work, I had lost my personal clarity and reasoning over a period of eight months, making me totally exhausted both physically and mentally.

I went to work the following day and submitted my resignation. The contract Manager tried to talk me out of it, giving me options above and beyond what he needed to, just to make me stay and take some time off, but it was too late, in my head I had pushed the button and just needed to get out and focus on getting my family and myself in a stronger place. I had savings for a rainy day and to me it was monsoon!

My acknowledgement

On one of Lisa’ last visits to the breast cancer unit, I was sat in the waiting room trying not to have eye contact with an older man sat there waiting for his wife. He stood up and broke the awkward silence as he passed me, tapping me on the shoulder whilst choking the words, “We have to be the strong one’s mate, we can’t show fear or emotion, just be there for her”, he made for the toilets and I didn’t see him again.

It showed me that I was not the only one making these mistakes, I only hope he got the help he needed in the end.

If I had spoken to my peers, family or friends, my Dr, or even contacted one of the cancer charities and asked for help, things would have been much more bearable and the support given would have been priceless.

I just didn’t realise how much my partners battle was influencing my whole work/home life balance and my subsequent decisions until it was too late.

I should have thought and talked things through, getting help from the outset. Lisa and I discussed her illness and the effects it was having on her and the girls on a regular basis, but the moment she asked me how I was doing, I would just change the subject and hide behind a reassuring smile.

I didn’t think about the millions of other men and women who have been through the same things as me, the help, guidance and empathy that could have been available to me would have made all the difference.

My advice

Seek advice from the many Charities available.
Talk to friends and family if you can.
Discuss it with your partner - Lisa was devastated to think I was hurting so much and couldn’t tell her what was really going on inside my head.  
Discuss it with your Manager at work and see what help or guidance they may be able to offer.
DON’T just bottle it all up inside!
You could even just drop me a private message if you like, I am no expert, but if I can help by listening, I will.
Just DO something!

An article I recently read made these comments;

“Few appreciate the pain, fear and confusion endured by the spouse or partner, with little or no time spent giving the spouse of the patient tips about how to proceed.”

“Many spouses of Cancer patients are greatly helped by having someone other than the person with cancer with whom they can speak about their feelings and concerns.”

“Friends and relatives may need to be educated. Some may not call because they are afraid of saying the wrong thing, calling at the wrong time, or feel they just don’t know what to say.”  

 I’m not sure who wrote this, but it sums it all up nicely:

“ Be strong enough to stand alone, smart enough to know when you need help and brave enough to ask for it “

   

What happened to us?

Most importantly Lisa’ treatment was successful! She has recently been diagnosed with lymphedema which was a known threat after her treatment, but we are a much stronger and open family now and are facing it together. My 4 & 8-year-olds are a year older, sleeping in their own beds again and both doing very well at school.

I am reminded of the cost of not asking for help when I see old video clips of myself on professional websites, showing interviews about being an apprentice, film clips of me in action with the teams and footage of me promoting Health and Safety reps to the workforce. This was highlighted when I received a text from a former peer a few months back with a film clip from Twitter talking about my progression through the ranks and my apprenticeship, he simply wrote “I saw this today on Twitter mate and was very sad, I hope you and your family are ok”.

It spurred me on to contact my old apprenticeship Tutor and convince him to get me an extension on the course, my final exam will be on Monday which will see its completion.

Soon we will start again, with a stronger, wiser and happier family who can face anything the world throws at us, together.

 

“Our greatest glory is not in never falling, but in rising every time we fall”

Confucius

When you read this, please take a moment to think about the partners of cancer patients you know and give them a call, they are doing their best to support the patient and just maybe they are making the same mistakes as me, mistakes you could help prevent.

GRANNY59
Posted by

Hi Swordsman 1969 welcome.to forum and thank you for sharing such an inspiring and beautifully poignant post with us.

I read your post right to the end and felt myself smile to realise that you have come out if this intact and together as a family and that makes my heart so glad. It is a testament to the strength you have within you and also the love that you share as a family.

I dont think that you will be alone in how you handled things and don't be too hard on yourself about that we all cope differently. This beast of a disease comes into our lives completely uninvited, turns everything upside down and challenges us to the biggest fights of our lives . You are a wise man that can reflect on all that and come out the other side changed and that needs to be applauded.

I wish you all the success in the world for the future whatever it holds for you and your family.

Im sending the  biggest hugs ever for you all. xxxxx

toxophilite
Posted by

Hey

I'm so pleased you've all come through this stronger and happier together!! And thanks for sharing your experience - it's a valuable input, and one that should have a wider audience I think.

I wonder whether you might post in Friends and Family as well? As there will be more folks there who will benefit from your wise words.

Massive hugs to all of you.

xx

Karen

mistymoley
Posted by

I think your new career should be in mentoring ,well done, that was spot on. 

Helen

I am not medically qualified, please consult your doctor or undertake your own research.

mistymoley
Posted by

I think your new career should be in mentoring ,well done, that was spot on. 

Helen

I am not medically qualified, please consult your doctor or undertake your own research.

swordsman1969
Posted by

Gail,

What lovely words, thank you very much.

I just know that I can't be alone in this and hope that I reach someone somewhere that needs to hear my story, before they make the same mistakes.

Thank you once again.

Very best regards

Darron x

swordsman1969
Posted by

Thank you Karren,

I will look into Friends and family now, it's not easy publicly admitting I made a mistake, but if I can make a difference to even just one family, it will be worth the humiliation.

Thanks for your kind words.

Best regards

Darron.

James UK
Posted by

Dear

Thank you so much for your honest and truthful post. I identified with much of  what you've said, particularly around communicating with your partner, showing your feelings, and having to deal with the reactions of friends and family.

When I told my closest friend back home that my girlfriend had breast cancer he made some spectacularly glib remarks and then started to tell me about his recent holiday and how much it rained (!) I''ve seen him once since she was diagnosed in March (no texts, no emails, no phone calls, no nothing), and even that was by accident when we bumped into each other in the street. I could write a book about some of the bizarre reactions I've had from distant family members too in telling them the news about her diagnosis.

A colleague of mine who survived brain cancer five years ago said to me right before my girlfriend had even had a full diagnosis that going through this will make you realise who your real friends are. I really know that now. Some have been brilliant, others just don't want to know at all. I know that when this is over that things will never be the same. I know who was there for me and who wasn't.

We're in our fifth month of this journey now together, and I've learnt through the uncertainty of her initial diagnosis, four rounds of chemo, rushes to A&E in the middle of the night, all the tears and upset, cancelled plans and isolation from the things we love in life, that communication with each other is so important. I've  also learnt that unless I 'offload' to others sometime then all my fears and worries are projected onto her, and that just magnifies the scaredness she has inside too. Emotionally, I'm no good to her if I'm not being a friend to myself either.

I've had many well meaning people say to me that I have to be strong and positive, that this is no time for despair. While I basically agree that keeping a positive outlook is important, I know how unhelpful it is to effectively be told that your worries are weakness and tantamount to failure. All it seems to do is ramp up the pressure inside. It's all part of the insidious masculine ideal that so many men feel they need to conform to (but that's a whole other topic...)

Thanks for your excellent post, I wish you, your partner and your children all the very best for her speedy recovery and the future.

Best wishes,

James

There is a light and it never goes out. 

swordsman1969
Posted by

Thanks for your kind words James.

Wishing you and your partner the very best and a quick recovery.

Very best wishes

Darron and family.

toxophilite
Posted by

Hey

Please don't see it as a mistake!!! And no public humiliation here - only gratitude for your honesty.

None of us, or our nearest and dearest, get an instruction manual to go with a diagnosis. There is no right or wrong in how we cope with it, only in whether we learn from it or not. Which you guys have. So a massive win on all fronts!!

I hope you don't mind, but I passed your post on to Admin, they will be in touch about maybe making it a featured post. Because it is such valuable input.

Thanks again

Hugs xx

Karen

Ellen M-Macmillan
Posted by

Hi swordsman1969,

My name is Ellen and I’m one of the nurses who works on the Online Community answering questions on our “Ask a Nurse” section.

I just wanted to say that I’ve read your post this morning and I had to read it to the very end. Thank you for sharing your story with us all here on the community, it really has such a powerful message that others will relate to.

Every day we talk to partners and friends of someone with cancer. Your words have given me an insight into what it can feel like. The lessons that you’ve learned and advice you have given us is better than any text book I’ve read as it’s from the heart.

If you don’t mind I’m going to pass your beautiful words and advice onto my colleagues who work on the Support line as well as the Online Community, so that they too can get a sense of what you felt. It will help them to support others and to pass on your advice to others who are struggling.

But, most importantly don’t think you’ve made a mistake, nothing can prepare you or teach you how to talk to someone you care for when they are diagnosed with cancer.

Hindsight is something we don’t have and every one of us at some point in our life would admit that we would do something differently if we had the chance.

I wish you and your family the very best and good luck with your exam on Monday.

Best wishes.

Ellen-Macmillan Online Digital Nurse Specialist.

Boobylou
Posted by

Thank you so much for those lovely words, my husband has been my rock , he has friend’s one of whom he has confided in but the others just “how is your wife” and don’t do anything , my friends are few now one I’ve known for 40yrs never see her she phones occationaly but never comes to see us don’t know why, but we have other friends that we have not known us for long, the invite us for meals and they reall look after us strange isn’t it, thanks again sending hugs. 

jaymacabc123
Posted by

Wow!  Thank you for putting into words what many of us feel.  I accidentally stumbled on this (it’s blood cancer that’s blighted our lives not breast cancer so I don’t really read other forums tbh) but the poignancy is just the same for anyone who loves someone going through the cancer nightmare.  

Confudulated
Posted by

Thank you for honest words.

they have come at just the right moment for me and I'm sure I will re-read them many times just to remind me that I can't do it all and to ask for help when I need it.

One thing I have learnt on this journey with my Daughter and her breast cancer is that you soon find out who your REAL friends are and they are not always the ones you expect them to be.

All the best to you and yours x

Carpe Diem