Last Friday my wonderful husband and I were given the news that he has terminal lung cancer stage 4 adenocarcinoma that is in his lymph nodes and possibly brain. He is only 49 years old.
It’s floored us all, we have 8 children and 12 grandchildren 3 of which we foster due to the mums poor mental health condition.
We were about to buy a house and move and now everything has come crashing down around us. We both have a strong faith but I’m honestly rocked, he is my everything, he is strong, healthy, hard working,
he suffered a pericardial effusion in April, and I knew then it was lung cancer I don’t know how I knew I just did, I didn’t however in my wildest moments imagine it was too far to cure, our family is beyond distraught. He is the strong patriarch who is always so strong and stoic.
He hates medical care and is needle and anything clinical phobic today he had an MRI on his brain and nearly had a panic attack, the radiographers wouldn’t slow down, explain everything and took his glasses off him before he was ready so he couldn’t see anything. This man is not one for crumbling I’ve seen him cope with real stress and grief over the years, but he sobbed all the way home, like a traumatised child - it’s broken me.
He has to have a pericardial window fitted next week and then chemo and immunotherapy afterwards to try and prolong life and shrink the cancer, he’s in agony every morning with pain in his jaw and head, he’s breathless and constantly trying to drink red hot tea to cope with the lymph node discomfort in his upper chest.
I’m juggling so many balls right now, I am a long term disabled due to fibromyalgia I home educate our youngest, with the fostering and all the social services, specialists, court, legal teams, our daughters legal defence for two charges, the purchase of one house the sale of another, organising insurances and pensions etc I’m not sleeping or eating and I’m scared stiff I’m going to lose my best friend and the love of my life, he is literally my everything.
His appetite is next to nothing and yet he would usually eat like a horse, he is so uncomfortable, his voice is going so even having a conversation can be exhausting and frustrating for him. I’m worried he’s becoming depressed (not surprising really), he’s petrified of treatment and the upcoming surgery
where do I start to support him and my children get through this awful tim
Hello MrsFooFighter and a warm welcome to the forum, though so sorry you have to be here, and for the heart breaking reason why, well done in reaching out after such awful news, and the dreadful time you are going through, I know how difficult it must be at this time for you and all your family, as a partner and father who also has stage 4 terminal cancer, 2 years now, and was told 7weeks ago my eldest daughter has terminal cancer too can I suggest you contact Your GP and ask for a referral for the district nurse and the hospice and their palliative care team, please don't think the care team or hospice are just for end of life, they are not, they are so much more, I have had them all for over a year their priority is to control the pain and often they keep one step ahead of any changes, and to make you as comfortable as possible so you can make the most of your time. The district nurse can access equipment, supplies and specialists when needed, and who to contact to get you support for all your family, and they will visit only when you ask, my best wishes to you, your husband and all your family, take care.
Eddie xx
Thank you Eddie, I’m so sorry to hear of your daughter. My husband had a brother who passed in 2006 after a 10 year battle with Hodgkin lymphoma they were inseparable, his dad has end stage Parkinsons so my heart is breaking for his mum and sister. I have contacted the CNS at the hospital and asked for the support from palliative care as you suggested and now waiting to hear from them.
thank you for answering me, this morning he’s in so much pain in his neck and shoulders, he can’t concentrate on anything and is increasingly tired and emotional
You are welcome, MrsFooFighter, I wish that when we are given our prognosis all the support and information was available immediately for those who want/need it, If the palliative team are as good as mine they shouldn't be long, take care.
Eddie
Hello
You say your husband is eligible for immunotherapy: this new treatment can work miracles. Do hope it is the same for your husband.
I’m so sorry that you and your husband are having to endure this. I know you will be given lots of information and excellent advice. For me the best advice I have been given is remember he’s your husband. He will always love you as you love him. Try to live in the moment. Try not to worry about what comes next. Focus on the now. Offload responsibility to sort out the rest of the stuff get others to work for you.
my husband also has stage 4 unknown primary but pretty much everywhere else has secondaries. I also have fibro.
Don’t forget you are grieving, use the counselling service they are amazing. You can talk about anything you want to.
all the very best to you and your family x
Thank you so much for your reply, we are still processing this and the nurses and doctors have been amazing, I’ve been referred for the counselling service and my hubby begins treatment on wednesday x best of everything to you and your family ️
He’s a 70% match for it, the oncologist is throwing everything at him, chemo and immunotherapy- I hope it can give us the time we need without too many side effects
In comparison with chemo that my husband is enduring for a whole new cancer (of the oesophagus), he found immunotherapy a walk in the park: no side effects, no fatigue, just a visit for an infusion that took an hour every six weeks. And it cleared the cancer completely after 18 months. Truly a wonder drug. But, be aware, everyone reacts differently and the drugs are still in development. He was in the 4% who have a total response.
Dear MrsFooFighter, I feel for you. What a shock and what a lot you are carrying. I just wanted to let you and your husband know that my husband's pain (from liver cancer) was much reduced once he started chemotherapy. Clinical care can be ghastly and frightening, I know, but it can also provide a community of support, kindness and relief of pain, together with medication from the hospice nurses/multi-disciplinary team. I hope you both get the care and support you need. Try to let go of anything non-essential for a while and look for little treats and work-arounds. Accept offers of help. My heart goes out to you all.
Whatever cancer throws your way, we’re right there with you.
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