Rare Cancer

Hello Edinmum,

Thank you for opening up here and sharing some of your story, you are very welcome and I hope that with the support from this forum, you will see that everything that you are thinking and feeling right now is perfectly normal. 

I am really sorry to hear that your husbands cancer is rare and incurable, but relieved to read that it is treatable, that is something very positive to focus on. 

I can't imagine how difficult it must be for you with small children, that is another layer and I hope you can find the strength to bring everything that currently feels so different back to a "normality" as you have said incurable cancer patients can live for many many years, a relatively healthy life, so hold on to the now, live for today, enjoy your husband and your children as you have always done and together you can aim for tomorrow.

There are many areas on this site where you can find additional help and support, I am happy to reach out and help you locate them easier if that would help.

Stay strong, I really hope the Chemo has great success.

Lowe'

So sorry to hear this Edinmum. 

My husband has incurable cancer and his prognosis (which I asked for as I needed to know) was maybe 12 months but that was the beginning of January. My husbands cancer is very aggressive though so I’m hoping for you that your husbands is not. I’m finding it really hard to come to terms with and I cannot begin to imagine how it just be having young children. Fortunately ours are now 28 and 30. When it does come time to tell them I imagine that Macmillan will be able to help you with how to have that difficult conversation. 
it’s doubly difficult when your family and friends are far away too, my dad is in France (and even though I’m 51 I could really do with a hug from him right now)  although with current lockdown we can’t even see family that live five minutes away from us. 
I think it’s normal to feel alone- I do too. I get constant message asking how I am and sometimes I tell people a little but I don’t tell them the truth of how much I am hurting because I think they all have their own problems. That is why this site is so good. We can pour it all out - to people who get to because they are going through something similar so whenever you need a hand to hold or a shoulder to cry on there’s usually someone listening on here.  I’m keeping my fingers crossed that the chemo will work well for your hubby and will give you extra time to make more lovely mental a family. 
Here anytime you need a chat 

Thanks for your kind words. I’m sorry to read what your going through too. I do feel writing things down is helpful. 

As a family we have lots of experience of cancer in different ways. We have a relative who went through chemo for stage 4 lymphoma. She is in remission but she’s not feeling well again & we are worried it’s come back. My dad is a bit of an odd case in that apparently he has lymphoma cancer cells on his body but it’s dormant & he gets regular blood tests to keep an eye on it. We lost my aunt just about 2 years ago to cancer her cancer moved into her bones which was incurable but she did love for 9yrs. In amongst all this my mum had a lump removed from her breast after it was found at a check up but she didn’t need further treatment. 

I’ve been feeling more positive since I wrote the initial post. My husband seems ok within himself at the moment so I’m holding onto that. 

Ive read some of the info from the hospital & I’ve also re-read his discharge letter from when he had the explorative surgery to see what was going on. It turns out they actually removed some or 1 of the tumors which we didn’t realise. This seems to have relieved some of his symptoms which is good although he does say that he gets shooting pains around his pelvis. 

It’s hard to hear when he says he’s in pain & it makes me worry but I’d rather know & don’t want him to hide it. 

we are both just impatient to get started with his treatment! 

stay safe & strong yourself 

I’m sorry to read about your struggles too. Where is your husbands cancer? 

We did ask about a prognosis but the doctor said she didn’t know. His cancer is known as Secondary Cancer of Unknown Primary so they don’t know where it’s come from. Before they found the tumors they had checked all his major organs & hadn’t  found traces of any cancer. They have decided it’s not worth looking for the origin any more. The doctor who is looking after my husband is on a research team for this type of cancer. 

They didn’t say anything about the stage his cancer is at & they didn’t they mention if it was aggressive or not. Not sure if it’s because they don’t know. 

The kids school (which is also where I work) is brilliant. I have spoken to someone about them supporting the kids (only when the time comes) & they’ve given me books to read about speaking to the children about it. The books have come from various cancer charities. They have also been very supportive of me as an employee & have said I can have time off when needed. The hospital my husband will go to is right next to the school so I can easily go to work while waiting for him rather than twiddling my thumbs. 

I feel the same as you about my dad. Last week all I wanted was a hug from my dad. I’ve got past that & I’m now in a better place. I don’t feel the same sinking feeling when I hug my husband like I did last week. 

My family are good. I’ve had initial messages from my aunt & uncles to say sorry to hear the news & they are there is we need anything. My aunt & uncles live closer than my parents although my parents will drive down at the drop of a hat if I need them (when COVID restrictions finally get lifted). We have a family chat & we continue normally with that. Nobody asks me if I’m ok which I’m happy with that because sometimes you don’t want to tell them the truth & sometimes you just want to try & forget about the situation. I have sent some messages to them explaining how I’m feeling as I find it helpful writing it down. Although I don’t want my mum to worry too much, my brother battled depression about 10yrs ago. He is in a much better place & has just become a dad for the 1st time. I don’t want my mum to worry about me suffering from depression. Even though there are dark times I have the kids so I don’t think I will suffer from depression. 

Anyway the kids are off school this week so we have lots of adventures planned. At times like these I sometimes feel I need them more than they need me! Fingers crossed my youngest will get to go back to normal school next Monday & then my daughter won’t be far behind. 

Stay safe & strong