Hi HMS,

I was in the same boat last August.  Steven was fine, hiking, fishing, living life like a normal person.  In July '18 he hit his head (he was chasing a paper plate that flew away in the wind and when he stood up he cracked his head on a metal shelf), they gave him 3 stiches and no big deal.   But he kept having headaches, before he could hit his 30 day follow up with the neurologist to have the stitches taken out, he was back in the ER this time for headaches.   They did an MRI and found the tumor.   (Glioblastoma)

He was admited right into the ICU and had brain surgery to remove the tumor.  You just breathe deep and assure him that he will be OK.  Right before Steven's surgery he asked "I am not going to die am I?"  and it took everything I had to smile and say, "No babe, you're going to be fine." They took him out for his surgery and I was a basket case for the next 8 hours or so.  Steven  (47 years old) did well, no paralysis,  no seizures, but he still has headaches.  We did the chemo/radiation route.  Still are.  He starts his third round of chemo tomorrow.  (5 days on, 28 day cycle)  we go for his 4th MRI at the end of the month to see if the tumor grew back or if the treatment is doing its job.  So far he has been stable. Woohoo! (that is the goal, no new growth after surgery)

So what can I tell you? It sucks and you are going to be strong.  And the strength will come from your love of your family or if you are religious, your faith in God. I am not religious but think that it would be better if I were, they seem to be a good source of support so I hope you have that outlet in your life.

You are going to need a person you can be 100% honest and true to. Not your husband - be as honest as you like with him, but you need someone outside the immediate family to rage at. The rage is normal, this isn't fair, the stress goes through the roof, you will be scared and you will freakout. You aren't going to want to share your freakouts with everyone- you don't want to scare you children or stress out your husband, so pick your best friend, family member, or clergy.  For me it is my dad.  Thier job is to let you vent - make sure they understand this.  To agree with you 100% even when you aren't going to be rational. (like when you decide to run away to france and open a bakery...lol)     To offer support and let you cry.   They don't even have to be wonderfully skilled, they just have to love you.   I have a bad week and my dad makes me a ham.  (i have gotten 4 hams in the last 6 months)  :)

You aren't going to want anyone to worry.  You are going to say things are OK.  You are going to comfort him,your kids, his parents, your friends, his co-workers, everyone - all the time. And for the most part this is true, because as long as you still have him it is OK.  By reassuring others, it helps you too. Because this is scary scary stuff. 

Things will be different.   They call it "the new normal"  and I don't know exactly what it is because it changes.  It changes all the time depending on the treatment, depending on him, and frankly depending on you too.  How you react to things and how you move forward is going to be your unique experience. 

The best advice I can give you is that the realization is that tomorrow isn't a promise for anyone. And I know that sounds like baloney, but it's true.  And that is what I focus on.  We have today, what can we do to make it a good day?  Everyone is moving towards death every day, some just a little faster that others.  When Steven gets the megrims and says he is dying, I say sure, but you aren't dying today, so let's go for a drive, or how about a walk, or a back rub? Making a list of things he likes and then surprising him with them can be sweet, like if he likes strawberry milkshakes, then one day surprise him and the kids by making them, or going on an outting to get one.  And science changes by the minute, the cure could be 3 days in the future, best focus on today, let tomorrow take care of itself.

I can also say that this is about your partner.  Yes, it is about your family, your kids, your world, but first and foremost this is HIS life. And if the prognosis isn't an easy fix, then he really has some soul searching to do and I still struggle with this part.  I feel i should know what Steven is thinking and feeling all the time, so I can fix it and make it better, but that is not right.  There are going to be bad days.  And that is OK, Cancer Sucks.  Just try to roll with the punches.   If he wants to be private, let him be private - to a degree anyway.. a big bad depression needs watching.   Anyway in my case Steven has been sweet and sour and sad and angry and this weekend a new one popped out,  Jealous.  He was jealous, that I am not sick, that I will move on without him that life in general goes on. Luckily his moods don't last wicked long, but they do take a toll.

As there will be rough times, there will be good times too.  Sweet memories, and laughter.  Holding hands and snuggling.  I could go on  and on with advice but don't want to make this long winded (ha ha ha).  

I wish you and your family the very best of luck for a quick successful surgery, an easy diagnosis, and the knowledge that you are not alone. 

If you need to vent this is a wonderful place to do it. People are quite nice.

Kind regards,

Rebecca.

Thank you for such a lovely long response, we have received our diagnosis grade 4, prognosis 12-18 months.  I am beyond broken,  done the messy crying and still saying I am fine,  we have to tell our children something this weekend.  I have a lovely friend who can be my vent, and I cannot express how much I appreciate your reply.  Thank you Rebecca x

Just thinking about you HMS,   I hope things went well.  

kind regards,

Rebecca.

Hi-Just read your post-was wondering how you are? My husband has too been unwell & it's rubbish...but I'm not going to go into detail about me, I just hope you are ok? xx

Hello

Thank you for the message, we are doing ok,  had a really tough treatment run of chemo and radiotherapy, 30 sessions and chemotherapy alongside and it was not nice to see my hubby to go through that.  Had a treatment break and now 6 months of chemo, 5 days a month.  I have good and bad days, went through a period of feeling really low, isolated and horrible but have accessed some counseling.  It's hard but trying to focus on positive events and make the most of the time we have.  Having some family time with my boys in a week, making memories x

Thank you for the message it means lots, we are doing ok, rough times but making time for creating memories.  It's just a horrible situation but I am determined to make the most of the time we have.  You have caught me on a good day though, sometimes I just feel like pulling the covers over my head and crying x

I know how very hard it is, Stephen is starting to decline and it is killing me.  He is past the radiation stage but due to him getting sick (bronchitis, kidney stone, tooth infection) we had to stop chemo for 2 months to get him healthier.  But in those 2 months that *** tumor started to grow again, so now we are doing chemo + Avastin.  The Avastin is an intravenous treatment that he has to go to the hospital for every other week. It targets the blood supply to the tumor cells.  

I am so thankful that for the first time ever my company is doing summer hours.  So i can work from 7-5 Mon-Thurs then either take a half day each friday or save one half day to take every other friday off.  Which is what i have been doing so I can go with him to treatment. 

It is kicking his butt though, makes him so tired and his blood counts have been dangerously low, they were monitoring him closely to see if he was going to have to get blood transfusions.   (his platelet count dropped to 146, if it dropped down below 140 he would have had a real problem) But thankfullly his levels are back on the rise, last week up to 196 (he is normally around 300) So I am hopeful.  But the hardest thing is watching him on this treatment and not knowing if it is working.  On this new treatment you don't get MRI until month 4 which is September . It will crush me if he went through all this and it didn't work.  

But we too are working on having as many good times as possible.   This weekend we have his family coming up for a camp out.  3 sets of his neices plus thier kids 2, 3, 3, 4, 6, 6, 9, and 13 years old, we have some more of his family, plus his friends, and our neighbors so it is going to be a giant shindig!  He is really excited and that is the best medicine of all.  

I wish the best for you and hope your journey is easy.

Kind regards,

Rebecca.

You have the right attitude! to make memories & have quality time-I hope next week with your boys is nice for you all-although it will be hard- you will have to be the strong one I presume? have you spoken to your boys? I think it is best to just be honest & open & let them decide what they want to do-for or with their dad...I do hope you have someone to be there for you.. how is the counselling going? it is a good idea to have it -I hope it gives you some 'relief'. I'm not surprized you feel like isolating yourself-its alot for you to deal with-but you will find that strength & you will handle it-because you have to & for him to have you there for him is the best thing anyone could do for him-thats love.

Cry! it is a release-you need to. Just make this time count-some don't get that chance. 

Big hugs xx

To RebeccaC, what an utterly beautiful, articulate and strong post.  Thank-you for sharing with this community.

HMS, I hope you are hanging in there.  There will be good days and bad days.  I find its best to allow time to let the tears, anger, emotions out so that you can make space for spending quality time with your partner. As much as it feels like it sometimes, none of us are alone on this hard, hard journey. 

All the best 

T

Hi HMS

I hope your husband is gaining strength and doing well on his treatment? 

Just wondering if you could tell me anything about Avastin?

My husband has stage 4 bowel cancer his 38 and we have a 1 yr old and 5 yr old. Not prepared to lose him but been given 50/50 chance to 2yrs 6 months ago. 

He has a KRAS mutation sk not suited to many chemo drugs so having 2 not 3. 

Today got a quote for Avastin from his NHS hospital,the want £1,250 every two weeks for Avastin and wont administer it with chemo has to be separate.... was this the same for your husband or did you get it funded somehow?

Hope you dont mind me asking. Toni x