Out of the Blue and very worried.

Your worries are totally justified and I really do feel for you because I am being put into a similarly dire situation. Taking on the caregiving role while working full time is a very challenging thing to do. I wish I could be there 24/7 for my mother (61F) who has stage 4 breast cancer, but I(30M) am the only person in the family who works. I think I will manage no matter what, this isn't something I can run away from. You are so strong for taking on all this. Coming onto online communities to vent is one way for me to blow off some steam, as I don't want to bother with my IRL friends too much and fill them with negativity. I also want to wish your fiancée the best of luck in his recovery.

Hi MotherofHuskies 

Welcome to our community though so sorry to hear about both your husband and also losing your job.

I wonder if you saw the blog here recently Finding a new job during or after cancer - under the Equality Act you are protected from discrimination on the basis of association with disability and that can be helpful in a job search too.

In the working from home bit one of the silver linings from covid is that many employers are now more open to this than before.

It may help you to speak to one of our financial advisors too and ensure you are getting all the support you are entitled to.

<<hugs>>

Steve

Hi Zefiris, sorry to hear about your situation! It sounds really hard to balance it all. Although, you are right, it has to work out somehow. We can’t just up and run away. 

I think I will at least be able to work out a plan once I know his prognosis and treatment options/schedules. But there’s nobody to really keep an eye on him if I were to be out of the house. 

Being the only person that works must be a lot of pressure for you! Wishing you lots of strength and resilience. And lots of love to your mother. 

Hi src60! 

Thank you so much for the article! I didn’t know this would apply to me too, at least I will be able to go into the job search armed with this info! 

The ability to work from home would be so beneficial for my partner. I’m really nervous to leave him for any period of time and other family members agree he should not be left. It just makes the job search that little bit more narrow! 

Thank you for the suggestion of the financial advisor! I will likely call them after we know exactly what is happening with the cancer in terms of treatment and we have some time to digest. 

I really appreciate you taking the time to give some suggestions! 

-MoH

Hello MoH, your situation does sound pretty stressful.  This place is somewhere to find advice (see you got some already!), vent and find support from those who have survived or are going through a similar situation. 

Does your fiance have a Macmillan or other cancer nurse team assigned to him yet?  If not, see what is available at your hospital, there should be support of some sort.

Join us over in the  Head and neck cancer forum  where you will receive more advice more specifically aligned with your fiance's type of cancer. The "biting tongue" seems to be a common flip-off.  Now you know it isn't, push for everything.  I recorded most hospital conversations on my phone.  The people giving the information do it every day whereas it is new to you two and very easy to forget or to totally turn something around - so record or make comprehensive notes.

Keep posting.  They are a fine bunch here!

Sounds like you really are having a tough time and I feel for u in your work situation my husband has secondary kidney cancer and was diagnosed with a brain tumour last Friday I can’t even get one day off work to go to an appointment today to find out what the next steps are it really shocks me the lack of support you get from work and looking at employment entitlement there really isn’t something in place to help us to be there for our spouses 

On Thursday we did not get the results we were hoping for. He has been diagnosed with a very aggressive and very rare head and neck cancer called a NUT carcinoma. He is due to start very intensive 6 day inpatient chemo and go for 3 rounds. 

Because this cancer is so rare, and so little is known, they’re not sure what it will do. But they are currently classing this as palliative. They have estimated 6-7 months. 

NUT carcinoma has only around 300 cases recorded ever, with only around 20 cases worldwide diagnosed every year. It is random, and fatal. I can see it growing quickly by the day. 

My life is falling apart, I’m going to lose my purpose for existing, my everything. We just bought our lovely home in November, planned our wedding for this August and thought we had a lifetime of memories to make. Now I see this isn’t for us and I’m fated to watch him in pain and deteriorate. He’s my soulmate. How do you carry on day to day watching this happen. He’s such a good man who has never hurt anyone or anything, caring, kind, generous and accepting. How can this happen to us? 

I’m having nightmares when I’m awake, stuck in a trance watching the inevitable. I can’t sleep at night, I spend my days trying to pretend I’m ok and running off to far flung rooms in the house where I shake and weep. This horrid entity has ripped away our future and ruined everything. 

I don’t want him to leave. I would do anything. 

-MoH

Oh my sweetheart.  I’m so very sorry.  I hope that the hospital have put you in touch with all the agencies who can hold your hands and hearts through all of this truly awful and dreadful time.  See your GP  if you haven’t already and ask for help.  Reach out and hold your family and friends close. 

Whenever you feel the need to scream and vent, you can do it here and I hope that someone will be along to say that they do know exactly how you feel and give you someone who understands. 

Much love and big hugs to you sweetie.
Penny xxx