Hello,
I suppose I'm just looking for some advice,
My husband, who's now 30 was diagnosed 5 years ago last month with a rare mixed cancer of the bowel. He had been told for months he had IBD but once they did the CT they could see the melon size of a tumour on his bowel. He had emergency surgery, had his bowel removed, half his stomach and his pancreas scraped..After that it was a round of Cisplatin chemotherapy. At the time they could tell it was in some lymph nodes around the area of the tumour but they didn't see it anywhere else. Shortly after the 6 months of chemo his lymph nodes in his collar bone was found to have cancer.
We were told at the time of the first chemo it was incurable and all treatments now would be to extend life but that life expectancy of the extent of his cancer was 5 years.
Since then he's been through 3 types of chemo in our local hospitals and 2 clinical trials at the royal Marsden and a number of surgerys to keep removing anything that pops up.
We've just been told the most recent clinical trial hasn't seemed to stop the growth of a another tumour on his lymph nodes at collar bone and so he'll be taken off the trial.
I have always been the positive one, I just want or need everything to be ok. I know what the consultant said about 5 years but I just don't really believe or want to believe in statistics seeing as we've just passed the 5 year mark, as most people with cancer aren't his age. Looking at him you wouldn't know he's got cancer.
But I'm starting to really worry, he's my favourite person in the world and I just can't imagine life without him.
I work full time to pay for our mortgage and bills and I'm starting to find myself really worried I'm wasting our life having to work for a corporate company 40 hours a week and I don't know what to do.
I just want to be out exploring life with him, making sure that if anything is to happen to him, that he got to enjoy life to as full as he can.
I find myself recently if I'm alone bursting into tears worrying about everything. I don't really know what to do. We do have chats together about it but then I end up hysterically crying and I don't like him to see how much I worry or think about if they aren't able to offer more treatments.
I've never spoken to a councillor as I never understand how they're going to help, my young husband is dying and there's nothing I can do..I don't know how a councillor could fix that.
Hello, I don’t often sign in during the day, it’s usually through the night when I can’t sleep, but I’m glad I clicked on, even just to say there is help and support out there and I’m thinking about you and your family.
You are right, a counsellor won’t be able to take away the pain of what you are going through, but talking about everything will help ease things. You mention you don’t like your husband to see you worry, having a counsellor to be completely open with and show your emotions without you worrying you it is upsetting anyone will help.
I believe Macmillan offer a counselling service and if there is a Maggies centre near to you, you can drop in to speak with someone. They should be able to offer advice with regards benefits and other help you may be entitled to, I understand you have a mortgage which is an added responsibility but finding out ways to ease your families challenges when things are feeling too much will help.
It is so difficult not to think of the future, and how you would like it to be. You sound as if you are doing everything you can for the person you love. I hope you also have support for you. I sometimes think things can be harder for our loved ones. I recently began to experience this when my mum was diagnosed with bowel cancer. I have melanoma, things can get tough but I muddle through the best I can. Now a loved one is ill with cancer it is like a double whammy and I’ve found myself worrying more about my mum than I do myself.
I hope you get support that can help you through these difficult times.
hugs
heather
Hello,
Your post really resonates with me. We’re in a similar position. Although a few years older but still only early 40’s. With 2 young adult children but both at uni and very dependant on us.
We were just getting to a place in our lives which was for us. Started travelling and exploring. Then hit with the bombshell of stage 4 not curative and no chance of surgery. We are exploring all options. But in reality. I’m not sure.
I work full time. My husband is self employed but is currently managing a few days a week.
I’m starting to struggle emotionally and mentally. Making silly mistakes at work. I don’t think I can manage working, supporting him emotionally (he is very understandably emotional) keeping on top all the hospital appointments. Medications. He’s never been good at organisation. . But financially, at the moment I can’t stop working.
We are waiting to see if critical illness cover will pay out which will hopefully pay a majority of the mortgage and mean I can take some time off. But it’s taking an age to sort and I’m so worried they will find a reason not to pay out.
Do you have anything similar? A joint mortgage with critical illness cover you could claim for. It should cover a terminal diagnosis. Irrespective of length of prognosis. Just an idea that might help with the not working and being able to spend precious time together.
Best wishes.
T x
Hello, I don’t have critical cover but I’m sure there is a separate page on here for people living with incurable illness. There seems to be a lot of success when folk put forward their claim which will hopefully ease your financial burden.
ADP is something your husband can claim, even if he is able to work, you can then claim carers allowance if you work and earn a part time wage (I’m not sure the exact figure).
It might help to speak to one of the financial team on here, they will make sure you are getting everything you are entitled to.
I totally understand your bombshell, though my 3 kids are 27, 29 & 32, my diagnosis rocked our foundations.
It is such a rollercoaster and knowing life will never be the same can be such a downer. Slowly, you will get nuggets of a new normal and you all have each other which is prescious.
Try and take care of your own emotional wellbeing first. I hope you hear soon re the critical illness cover, if it feels too overwhelming there are organisations that can take over and fight your corner, if it comes to that. You need to save all your resilience for you & yours.
I have my immunotherapy treatment on Monday, the consultant is calling on Friday with my blood results and I’m going to ask what happens after my final treatment for immunotherapy……..
I will keep you posted.
Take care xx
deffo look into the critical illness, i had letters from when i had the breast cancer, which i emailed across - pretty much settled in 10 days which helped sort out the last bit of the mortgage giving breathing space as i am signed off now dealing with oesophagus cancer. i understand that if terminal some life insurance will pay out up front, and also pip is easier to apply. i didnt feel comfortable claiming for the critical pay out but when we took it out never in a million years thought i would be using it. they couldnt have been more helpful, and they adjusted the monthly premium down as well.
hope this helps
I am so sorry to hear of your situation. I lost my wife Laura to bowel cancer 2 years ago. We have two small children who were 3 and 5 at the time. We had 8 months together after her diagnosis and we were married for 5 weeks before Laura passed away. I look back and think about all the things we could have done in those 8 months but in truth we just sat and talked and talked and spent as much time together as we could... but never did we talk about the future or what may or may not happen, Laura didnt want to contemplate any talk of a future without her, especially with the boys to consider and I am so glad we didn't. Those 8 months were spent just being together, something that couples sadly dont get a chance to do much anymore or take for granted.
It must be very hard working 40 hours plus a week but you and your husband realise you do it because you have to.
I had taken out critical illness cover thinking it would be to help Laura if anything were to happen to me... I have a family history of ill health, losing my dad and sister to cancer and wanted to help Laura and the boys in anyway I could. I never in a million years thought I would be filling in the forms for Laura. I hated having to put the claim in but I used the money for us to have the wedding of her dreams and we did just that. Sadly her health deteriorated shortly after the wedding.
I would follow up all financial help you can get, Macmillan were very supportive for me and helped me through some tough times with guidance financially too. It is so very hard when you are working 40 hours a week on top of everything else. Are your company supportive and understanding of your situation ?
As for the counselling, I found it a great help and comfort. They cant 'fix anything as you said but it was a chance for me to really open up about my feelings, fears, anger and anxiety, some of the things I couldn't do to family or friends. My counsellor helped guide me and made me realise its ok to feel the way I do and suggested coping mechanisms for some of my worst days. Laura and myself even went to counselling together during her treatment and it was a real shock to hear her talk about her fears and for her to hear mine but in a good way.. it brought us even closer together because we had opened up to each other and gave us more of an understanding and we faced each new day in a different light.
As her partner I often felt I couldn't 'let her down' or be seen not to be strong for both us and the boys, or 'how selfish of me to feel upset' when it wasn't me who was diagnosed and it just added to the strain and pressure of the situation and one thing I learned early on was if I bottle it up then I am no good to anyone.. you are human too and its ok to feel scared, upset even angry, we've all been there and we'll go there again.
This community has been a constant source of help and inspiration to me from the time of Lauras diagnosis, all through her treatment, her passing and even now, two years later.. because I can see even though I am sitting alone at half past midnight (boys fast asleep since 730) there are people out there who have been through it, going through it or sadly are about to go through it and we are all here to help and support each other in anyway we can. Some of the strongest people in our lives are people we do not and will not, ever know.
Just keep doing what you are doing, you're amazing and you will get through this.
Hi
My partner was diagnosed with melanoma in his liver 2 weeks ago now. We have been told he has months left with a slim hope of immunotherapy to prolong this.
Im struggling to understand why he is being taken from me and his children. We have only been together about 18 months and we are in our early 50s.
Though we don’t have years of love that we are losing, we do have the most incredible love for each other and we had planned so many amazing experiences, that we won’t be able to do together now.
When I think of life (retirement) without him I cry and I cry. I’m so sorry this is happening to you when you are both so young, nothing makes sense to me.
I think I will find strength being a part of this community and I would like to be able to give you and others strength also.
My feelings at the moment is just overwhelming sadness and confusion as to why this is happening to us.
sending you big hugs and please reach out think sharing helps to get through
Sarah
x
Thank you Sarah. I am so sorry to hear of your recent news. These really are confusing times as you say. Laura was constantly asking, ‘why me, why now?’ and the sad truth is, life as wonderful as it is, won’t ever provide that answer and we will forever ask ourselves ‘what if we had done this?’, or ‘should we have known sooner?’ But sadly that doesn’t change anything and you just end up getting angry about life and how wonderful it can be one minute with the birth of our boys, to how cruel it can be to take a loved one away a moment later.
You will be strong and you are giving strength to others, me included, just by getting down in writing how you feel and what you and your partner are going through.
There are no words more powerful than true emotion, fear and hope of a real life situation happening right here, right now in homes across the world. Sadly too many homes. A story shared is often something somebody just needs to hear at that moment in time to understand they aren’t alone.
People would often say to us ‘I can’t imagine what you are going through’ , and it is true.. you can’t imagine it., you have to live it and try as hard as it is to understand it, question it but ultimately deal with it on a daily basis so you can get on with the next day then the next one, then the next one.
After Laura’s diagnosis we just spent as much time as we could together, often talking, sometimes just sitting quietly enjoying each others company not needing to say a word. One day I noticed her writing down some notes in a book, ‘what are you up to?’ I asked innocently, ‘Writing a few words for my funeral I’d like you to read out please’ was her reply.. it felt like someone had hit me in the stomach with a hammer. Laura was as calm as could be and it broke my heart with the pride I had for my Laura’s strength. The words turned out to be a poem she’d written to our boys. I took a few words from the poem and those are now engraved on her headstone. I guess my point is, courage and bravery from both parties can show itself in the strangest of ways but it’s there and always will be, you’re love for each other is testament to that. Love to you both, do whatever you both need to do to get through each day, then tomorrow do it again, then again, then again….
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
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