Coping with the mental health aspects of all this.

[Borobi]

Hi all. I’m really struggling with the mental health side of living with someone with incurable cancer. My partner was diagnosed 18 months ago - his tumour was picked up early. But that doesn’t help much. Surgery not an option. 6 months chemo last year, 3 months radiotherapy early this year and now in more chemo. Since he’s gone back on chemo he’s been really angry and moody. (Tumour still growing and now signs of secondaries). The slightest thing will set him off. I totally understand that having cancer takes a terrible toll on your mental as well as physical health, but it’s really hard to cope with, especially as life is so restricted at the moment. I have to be really careful whatever I say to him. I’m thankful that he’s one of the lucky ones who’s survived more than a year, but I find it hard to deal with his moods. Is it the chemo? Will he feel better afterwards? (He’s on Gemcap). Or if this is it, how can I make whatever time he has left more bearable for him and me. I’ve suggested talking to someone (our cancer centre has counsellors) but he won’t do that. He’s not the type to join in with groups of other patients or seek support from here. And being a bloke he doesn’t really have many friends to support him. And he’s really nervous about going out due to Covid so we’ve hardly any distractions. Any suggestions welcome.

[Celeste]

Hello,

I saw you post back in August when my husband got diagnosed and obviously had nothing to say. Have things improved mood wise?

[Borobi]

Hi Celeste

Thanks for your response. I’m really sorry to hear about your husband. It’s a horrible place to be and I hope you’ve got support. I wish you both well in your journey.

They stopped the chemo as it wasn’t working and the good news is that his mood improved, so it must have been the chemo. We had a few good weeks. Sadly he developed jaundice and after several failed attempts to fit stents, he died on Friday.

It’s a truly awful disease.

[PCUK Nurse Dianne]

Dear Borobi,

I am so sorry to read your post and hear of your Husband's passing. Please accept our most sincere condolences on behalf of the nurses on this support service Borobi. I am sure this must be such a raw and emotional time for you at present, very difficult days and such an overwhelming time.

I am sure in coming days other 'family members' on this forum will support you and have you in their thoughts Borobi.

Please do not hesitate to be in touch with myself or any of the nurses here in the coming days/weeks if we can support you in any way at all.

Please accept our most heartfelt sympathy Borobi. Thinking of you.

Dianne

Pancreatic Cancer Specialist Nurse

Pancreatic Cancer UK

Support line - 10am - 4pm Monday to Friday

Ph: 0808 801 0707

email: nurse@pancreaticcancer.org.uk

[Proud Wife]

Hello Borobi

I am so sorry for your loss. I am also very sorry that this wonderful forum is so quiet nowadays. When my late husband was ill, I had the most amazing support from the forum family members Dianne refers to and almost 5 years on, we are still in contact, even though each and every one of our loved ones passed away from pancreatic cancer. As part of the grieving process, we have all tended to drift away now but the desire to help others in the same position never goes away. We all share a horrible common bond and understand exactly what each other is going through and will always help and share experiences.

Having read your first message just now, I was going to say in my opinion it must have been the chemo as my hubby acted out of character whilst on Folfirinox and we knew it wasn't his fault. it sounds like you did you absolute best for your partner and he was lucky to have you by his side. I can't imagine what it must be like for the person who has the terminal illness knowing the world will still carry on regardless but I do know it can be very hard for the carer too.

Be kind to yourself, see support from those around you and just take it day by day. That's all you can do.

Sending purple hugs to you

Proud Wife (I still am ....) x

[Borobi]

Thank you Proud Wife. On balance we had a good almost 2 years from diagnosis. I even enjoyed lockdown as we just sat around together like a couple of old fogeys! His health was pretty good up till early September so we were lucky. I agree with you about the hell that it must be for the cancer patient. We get off lightly by comparison.

Although the forum isn’t very active I found it helpful as I’d look back on old posts. I think it helped me come to terms with the inevitability of the diagnosis of a non resectable cancer.

So now my aim is to raise lots of money in the hope that future proud wives can be spared this hell.

Much love.

[Celeste]

Dear Borobi, i am very sorry to hear this.

Much love

[Jess]

Hi, just wanted to say hello, my husband had a whipple in August and is due to start chemotherapy.. Not certain yet whether it will be folfirinox or gemcap because he hasn't recovered his strength as much as we had hoped.. He had complications post op. It has been a roller-coaster of emotions as Im sure you already know..im anxious about the side effects.. Particularly the mental and emotional impact. He isn't a very positive person at the best of times, so I know it's going to be a challenge ahead.. Thank you for posting, it's so important to know we have support and that we're not alone... Best wishes x

[Borobi]

Hi Jess.

Thanks for your message. My husband was quite pessimistic, which can be hard on the partner. He would read things into the reaction of the radiologist doing the scan, which was probably the same thing they said to everyone. When he got his first abnormal result he decided that was it, whereas I was trying to be positive until we had a definitive diagnosis. He was of course right in the end, but we’d had years of him worrying about and being tested for cancers he didn’t have!

You have to try and find that balance between reality and over optimism, which can be a challenge.

My husband had Folfirinox last year which didn’t affect his mood at all. In fact he was really lucky and didn’t have much in the way of side effects. It was definitely the gemcap that changed his mood.

Jess, please keep in touch. I’m happy to sit beside you through your journey. My husband wasn’t able to have a Whipple (altho at one point he was listed for one) but I guess lots of our experiences will be similar.

Everyone will say take care of yourself, which can be hard, but do try to.

Thinking of you. Xx

[Jess]

Thank you so much Borobi.. That's very kind of you... I think he intends to try with the folfirinox in the hopes he will tolorate it... I think the encologist will leave him a couple more weeks to get stronger before it starts.. I try to be positive for him.. While still mentally preparing myself for what lies ahead.. Im so sorry for your loss.. Its very kind of you to offer your support when you must still be so raw. Love and hugs x