Welcome back!

Husband diagnosed with ALL today, we are terrified

Hi My Husband had what we thought was a stroke 2 weeks ago, this was quickly diagnosed as a seizure. Following MRI, Ultrasound, CT, PET/CT scans and a bone marrow biopsy he was diagnosed with ALL today. He is 69 and fairly fit and healthy he had no symptoms at all before his seizure so we are in total shock.

His consultant told us its rare in adults and will be in hospital for at least 4 weeks having aggressive treatment,he says due to genetic makeup treatment is not so good for the elderly and they can suffer many infections some maybe life threatening. He said if this doesn’t work most elderley will not be fit and well enough for stem cell treatment.
Although it is a plus that he is starting fit and healthy.
We hope he was giving us worse case scenario and we can’t seem to take anything positive from it. We are both feeling very scared. It’s made even harder not being able to be with him due to Covid although his consultant says I can spend 10 minutes with him tomorrow before he starts treatment.
Any words of encouragement please.
.

5 Likes

Hi @summer123 a great big welcome, I am so glad that you have found us so quickly.
You must both be in complete shock and very scared.
I think consultants do try to cover all bases.
I have another blood cancer which I was diagnosed with 17 yrs ago, I am now 71 yrs old.
The Blood Cancer UK website has a lot of helpful information on it, under ‘understanding blood cancer’. If you would like to talk to someone the support line details are above.
Perhaps just keep talking to each other about your fears, thoughts and feelings, shock takes a long time to get over.
Can you keep in contact by mobile or a visual means if you cannot visit often?
Have you got support from family and friends?
Perhaps now is an opportunity to write down your fears, thoughts, feelings, questions, practicalities for you both to ask your husbands medical team and please do not be afraid of asking for clarification if you be not understand something.
Be kind to yourself and please keep posting how you are both getting on.
I hope someone will be of more help to you.

2 Likes

Thank you for your kind comments. I do have lots of support from family and friends but I am struggling to admit to them how scared and worried we are as I am saying lots of positive things I dont feel.
We talk on the phone and facetime so thats good but no replacement for a hug and handhold.
I must start writing down questions and worries to ask the Consultant I am afraid I just went blank today.
I just want someone to say everything will be fine but I suppose everyone thinks that.

2 Likes

Hi,

I’m so sorry to hear about your husband, it just be a huge shock to the system. It’s sounds as though you are handling it as well as anyone possibly can.

I’m in my late 20s diagnosed with ALL and my consultant also stressed how aggressive the treatment could be and empasized risk of life threatening infections, I think they have to inform you off all the possible consequences. Mine told me these were expected complications and would be closely monitered. That’s part of the reason he will be admitted to hospital, so his team can keep a close eye on him.

If it is really worrying you don’t hesitate to contact the consultant or even your husband’s specialist nurse.

Do you have a means to video chat to each other? I found just having someone on the other side of the phone even if they weren’t fully paying attention to me was a huge help and helped me feel less isolated. I even watched films/tv with people over facetime to help pass the time. Maybe this is something you could try?

Don’t hesitate to ask reach out to people on this forum to help you through!!

Take care!

1 Like

Hi summer123
I know exactly how scared you are feeling. I was diagnosed out of the blue with ALL in April this year. I also have the Philadelphia cromazone which makes the disease more likely to return. I am 57 and was advised to have a stem cell transplant.
Anyway I have got through the last 3 months on chemo pretty well. Now getting prepped for stem cell transplant starting 30th Aug.
I can resonate with you trying to be all positive to everyone else, almost as if we are trying to make everyone else feel better :slightly_smiling_face:. Underneath we are all over the place.
Where are you based?
Sending strength to you xx

1 Like

Hi @Summertime, I know the one about saying positive things I don’t mean to family and friends. I put that smiley mask on so easily.
I now realise if I do not say how it really is for me then how can others help and if they are good family and friends firstly they have the right to know and secondly I have found if I am honest then our relationships go to a deeper level. What am I trying to protect them from?
Perhaps it is similar to you wanting someone to say everything will be fine !!!
You certainly aren’t the only one especially when the unknown is so scary and we are feeling so out of control. It sounds to me that you are in the right place here where you can be really honest about how it is for you.
Take lots of care of yourself and keep posting.

2 Likes

Hi @summer123
As a newbie here myself welcome to the forum

Part of the process is admitting how scared you are and you will cry. If you don’t get that out there it clouds over all the other things you need to say and think.
It’s so natural to be scared
Once you get that hurdle out the way I used to say to my friends/family after I told them I would say have a good cry then only positive thoughts here please :slight_smile:
I’m very open and I encourage everyone around me to ask questions even the hard ones and what I don’t know I find out.

Writing down your questions is a good start

I love how the consultants say this and that is rare don’t dwell too much you know that they are and now focus on getting to a stem cell transplant

Keep up FaceTime/calls be honest with each other if your honest hubby should follow

Take each day as it comes and deal with the moment

This is a lovely forum with nice people

You will have your moments of being afraid that’s where I guess we all come in with our little pearls of wisdom I like to think
Even pearls shine in the darkness

:slight_smile:

1 Like

Thank you both @Summertime @2DB d @nbk112 kind of you both to reply. I know we will be more interactive in the coming weeks using facetime, zoom etc. Sorry I haven’t replied but his lovely Consultant had let him home for the weekend before treatment on Monday. It was so nice and normal and he seems so well hard to believe his body is hiding this illness.
I must admit we struggled to talk about how scared we both are, all I wanted to do was be positive with him. But I am the same as all our family and friends who have been visiting, sending messages and cards saying everything will be fine I wanted to scream at them you don’t know that you haven’t been through this -stop saying it. But they mean well.
Glad Summertime you got through your chemo well and your heading for your stem cell transplant, we are in the Midlands and he is being treated at University hospital Coventry.
Its day 1 of chemo today and we will try and take each day at a time, if today’s a bad day we can hope tomorrow is better.
Thank you one again its nice to have some support.

1 Like

Morning @summer123
Ah that’s so lovely to hear you have had hubby home for the weekend a little bit of a new normality.
You are both doing great even on the harder days.
I too couldn’t understand why everyone kept saying I’m sorry to hear and I had a chat with a manager at work about it and he asked me what I would say if it was a friend and you know what I said I’m sorry to hear :see_no_evil: because we don’t really know what to say when we are not faced with danger to our lives.
It’s people just being people they mean well.
While your getting coiled inside they are getting on with life.
I know your angry it’s normal feelings, just be with that feeling for a few minutes accept it and then continue looking after you and hubby

It is hard to have that discussion about (I will say it dying) I didn’t want to hear when my brother wanted to sort my affairs out, you know what he said that way I could focus on getting through my treatment without it in the back of my mind.

Today is a new day full of unknowns some good some not so
Thinking of you both on Day 1
Sending you :pray:
You got this both of you keep fighting :slight_smile:

1 Like

HI @summer123 it’s so interesting that we do not know what to say, or how to say it, even to our nearest and dearest, in difficult times.
Mind you when I was first diagnosed I think everything anybody said was wrong even though I knew that they meant well.

1 Like

Hi @summer123, we’re sorry to hear about your husbands diagnosis of ALL and medical issues he has faced with the seizure. Sounds like it was such a shock for you and your husband with him being fit and healthy and not experiencing any symptoms. Blood cancer can be difficult to diagnose especially as people don’t always experienced any symptoms and it being a hidden cancer. As the wonderful forum members have stated health care professionals just want to cover all basis and give you all the information, everyone is different and everyone bodies are different. Take each day at a time and as easy it for me to say be positive for him. We are always here for you if you want to talk to someone impartial about how you are feeling and what you are going through or just to be put things in perspective, here are all the ways you can reach us: Blood cancer information and support by phone and email | Blood Cancer UK.

Look after yourself.
Bav

2 Likes

Hi sorry to hear your news. My son was diagnosed August 2019 with ALL. He was 25 on diagnosis. Graduated from uni 4 weeks previously. He put his symptoms down to his uni work. The doctors will tell you the full story. We couldn’t believe it was happening. He had his stem cell transplant February 2020 our daughter was the donor. Take it day by day the chemo wasn’t to bad for him. Male sure hubby takes in snacks/magazines/books to hospital. Our son took his amazon firestick with him. To this day we nicknamed his leukaemia lemons :lemon:. We couldn’t mention the C word. I know that sounds daft. Once your over the shock it gets easier.

1 Like

I wonder what it must have been like for you as a parent @cyprusfan having your 25yr old son being diagnosed with leukaemia lemons and going through his various treatments and then your daughter being his donor, it must have been so hard.
How do you feel about the ‘C’ word now?

I still hate the word to be honest. It was such a shock diagnosis. I don’t know if this sounds silly but I truly believe we go through PTSD with it. It was an emotional time our daughter was 20 donating. She was unsure at first if she could go through with it as she was naturally frightened. A lot of people say how can someone be in two minds…trust me it’s easily done. She had her own nurse and had to have a few chats that included she mustn’t blame herself if it failed!!..he is now in remission and 100% her blood. Part of me used to wish it was a stranger that donated as being his sister it’s a huge emotional burden if things had gone wrong. Bless her she was exercising and following a healthy diet to be able to donate good cells. The worry is still there. He has a bone marrow biopsy every 3 months for 2 years, I hate the wait. Lemons has taken a lot from him, he was due a job trial when he got admitted to Kings hospital London. They froze his sperm as the treatment was so harsh. He has now started applying for jobs. When they said August 2019 it was a 12 to 24 month treatment plan I thought they were exaggerating!..bloody lemons!

1 Like

@cyprusfan your right about PTSD
When I had counselling I was diagnosed with PTSD due to a life threatening situation it’s very real.
Wow what an amazing sister/daughter gifting life selflessly although as many of us we would have those moments of uncertainty that’s natural. Your allowed two minds shame on those questioning that.
You have amazing children :slight_smile:

I don’t know if you have had counselling, if your able go for it. It helps to talk through those fears that you have just gone through and the massive shock you are experiencing

It is hard work recovering but stage by stage things get better. It sounds like your Son is getting stronger day by day

Enjoy your special family :raised_hands:

1 Like

Hi @cyprusfan and @2DB, I also in retrospect think it is a form of PTSD.
It was 17 yrs ago but I can replay when I was told of my diagnosis and after as if I am looking down on the scene, and all the sounds, thoughts, emotions and feelings come flooding back, then it is like I was in a bubble with the world going on around me for quite a while.
Your world changes forever.
I wanted to pull the leukaemia out of me.
I don’t fight or flight, I freeze.
I also found counselling helped me in a different situation.
I can really understand your daughters thoughts and feelings, not easy and the whole focus is on her brother.
Can anyone else relate to this.

1 Like

Hi my 1st time on here I’m 72 and been diagnosed with myelofibrosis oh gosh I was so scared and cried but my consultant and specialist nurse are brilliant any fears I have I talk them through and the medication I’m on is helping it just needs tweeking now and again …sometimes I feel so alone

1 Like

Hello @Suzyq. Welcome to this forum. We are pleased you have found us and thank you for having the courage to share your story. I too have myelofibrosis. It is such a rare condition and no two patients seem to be alike in how it affects them. It sounds like you have a brilliant medical team. I hope you have other support also in terms of friends and family maybe? Don’t forget if you want to speak to anyone there is the wonderful Blood Cancer Support Line on 0808 208 0888. Please let us know how you’re doing when you feel able. Warm wishes. Willow

1 Like

Hi @Suzyq a great big welcome to our forum now you have the support of us and I hope you will never feel alone again and it also sounds as if you have your medical team to support you they seem brilliant.
I was certainly so scared and shed many a tear I can tell you, your world has been rocked.
Have you got any family or friends?
How do you spend your time?
@Willow has given you the details of the support line.
I look forward to hearing more about you, take care.

Hi @summer123, reading your original message almost completely matches our experience and my own feelings. My fit and healthy husband was diagnosed with AML in January. He had two rounds of chemo that didn’t work but was completely well during both cycles. His consultant then put him on more aggressive chemo and that’s when it really got serious. He got 3 bad infections which at the time were unbelievably scary but the team at the hospital were on it every time and hit him with antibiotics they jokingly referred to as ‘drain cleaner’. That did the job and he got better. He was in hospital for 6 long weeks and we kept in touch via regular Skype calls throughout the day. Fortunately I was able to go and see him several times as covid restrictions lifted a little, so you may well be able to do that.
I totally agree with what you say about people meaning well and yet having not the slightest idea of how bloody frighting it all is. Our family and friends have been a huge support for us though and I do have that one friend who is willing to share a rant when I need one.
My OH is currently in partial remission but his platelet count is too low for the next round of chemo so treatment is now delayed until 31st August. Same as you, his consultant told us today that he’s really too old at nearly 72 for a stem cell transplant so everything hangs on him going into remission after his next chemo. Needless to say we’re not looking forward to that again but I have faith in his team and just hope he’s strong enough to weather the next storm, but yes, I’m terrified. Trying not to think about it for now and just get on with life as he’s still very well. I’ll be thinking of you in the coming weeks in the knowledge that you’ll be going through what I’m going through and I’ll be sending some positive vibes in your direction. xx

1 Like