Feeling selfish and alone

Hi Lscd and a warm welcome to this corner of the Community although I am always sorry to see folks joining us and sorry to hear about your husband's diagnosis. I am Mike and I help out around our various Blood Cancer groups. Sorry for the late reply but only noticed your post had not had a reply.

I don’t have Acute Lymphoblastic Leukaemia but I was diagnosed way back in 1999 with a rare, incurable but treatable type of Non Hodgkin’s Lymphoma Stage 4a so although my Blood Cancer ‘type’ is different I do appreciate the challenges of this journey rather well. but my friend Paul1969 knows the journey well so let's look for him to pick up on your post.

When it comes to the practical and emotional challenges of supporting family you may also benefit from joining our general Carers only support group where you will connect with others navigating the same support challenges.

Macmillan have many support services so do check out the Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. These services provide cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.  We also have our Ask an Expert section but do allow a few working days for a reply.

Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and aim to give support to all the family.

Please do get back to me if you need further help.

Always around to help more or just to chat

Hi Lscd

Sorry to hear that your husband is being treated for ALL. I was treated in 2012/13 and at that time I was on the UKALL14 which was a trial at that time. I am now 10 years on and life is great and very normal.

Is your husband currently neutropenic or are his white blood cell counts just low? Towards the end of my second stage treatment whilst I was still neutropenic (below 0.5) I had had enough of staying in hospital after 36 days and I discharged myself. I just wanted to get home.

We were careful and didn't have any visitors if they were showing sign of being ill but I did still see family if they were feeling OK. We never did the whole "bleach everything" routine just were sensible (my wife is a nurse and as she said the nurses in hospital were still going home and seeing other people so I wasn't living in a bubble even in hospital). 

There is always a risk of picking something up and if your immune system is low then there is more risk of it developing into something. 

The one thing we learnt very quickly is if I felt ill go to hospital straight away. Don't try and tough it out for a few days at home. Of course I didn't want to go to hospital but discovered by trying to stay at home for a couple of days when I felt rough usually resulted in a 7 - 10 days in hospital to get sorted out whereas if I went in straight away it may just be a day visit or an overnight while they filled me IV antibiotics. 

Also I think when you first hear the words neutropenic and no immune system it makes you very concerned as it is all new. Whilst I am not trying to minimise it in any way after the 4th or 5th time it isn't so scary and I was more concerned about not eating the foods on the "banned list" at that point in time. 

It is important that you have some normality and also I always liked to hear about normal life going on so I had something to look forward to. Have you asked spoken to your husband about how he feels about you taking your son out? He may feel that he wants you to do that so he can hear about the fun he has or see video clips and photos etc.

Its about finding the balance whereby you are all happy and never lose sight of how you feel as your role as your husbands main support person is so important. If you are "happy" and coping OK (I get it is all relative) then it is easier for you to be yourself. When I was going through the treatment I loved the fact home was normal with people coming and going.

If you have nay questions feel free to ask or drop me a message.  

Hello :-) first i would like to apology for my english (not my first language) i’m new in here and reading your message reminds me so much of me that i couldn’t stop myself but reply to your message My husband was diagnosed with ALL last December. It was such a big shock to everyone but mostly me. Just few weeks before this we found out i was pregnant with our second child. We have a 5 years old boy. During the first 6 months he was mostly in the hospital. Same as you every single day i used to drop my son to school and go to visit him at the hospital (about an hour away from home), spend good 4-5 hours with him and come back to collect our boy from school. Every weekend i used to go to the hospital and spend most of the day there, so i can keep him company, so i can give him strength to keep going. My mom lives with us, she is our biggest support, no other family members in UK. She is full time working but was able to help me with my son on the weekends.  It has been extremely hard. I couldn’t even enjoy my pregnancy, even at one point i was thinking should i keep the baby or have an abortion. I used to feel awful when i had to lie my sweet boy that mommy is going to work and cannot take him to the park to play with his friend ( i was going to the hospital, stopped working when my partner was diagnosed). We told him daddy is going to work far from home. I stopped meeting friends, i even didn’t have time to talk on the phone with anyone. I was tired to play with my son after school, i didn’t sleep well at night, i was really sad and depressed. I wanted my life back so much. I kept asking what have i done to deserve this again? (Lost my dad due to lung cancer 8 years ago). Counselling sessions helped me a lot, talking face to face with professional people helped me. Same as you i was scared if someone in the house gets sick or having a cold, as my husband having low immunity. But i couldn’t stops him going to school so i had to accept the idea that i cannot control everything. So yes… me with the big belly going to the hospital, everyone knew me, all doctors and nurses at the hospital. Lucky my husband was at home when our beautiful daughter was born 4 months ago. Soon after she was born we had a stem cells transplant and spent another month away from us. That was the time when i couldn’t go visit him as i used to before. With a new born in my hands and breastfeeding there was no chance. Think i went two ot three times with the baby when he was well enough to come to the front of the hospital for an hour.
my husband is at home at the moment recovering after the stem cells transplant. It was hard, it has been hard for everyone.
i just want to tell you that i know how are you feeling, all your worries. At one point i used to hate the world, i used to look at people enjoying, eating drinking on my way to the hospital every day, i used to feel jealous, and i still do. But i have accepted the reality and keep going, hopping that things will get better, normal again. My lovely children keep me motivated to wake up every morning. You are lucky to have your baby :-) this is your strength. I really hope your husband gets better soon and recover quickly from the treatment. I found phase2 hardest as waited long before his blood counts go up and gets discharged. Keep going hun, you can do it. Sending you a hug, you are not alone x

Hi Paul, 

Thank you for such a lovely, kind and detailed response. Apologies for not getting back to you sooner. 

He's been really well and not neutropenic at all so far. His cell count was really high (obviously) and now it's back to normal.

Since reading your message, I feel a lot better and I did talk to my husband about going out with our son and he was happy for me to do that. I now think that it is a case of being sensible. I'm not going to go to a concert or a rave but I am now happy to take my son to a farm!

Is there a banned list of food? We haven't been told about that. I do remember being told that he should avoid take aways as you can't tell how long it's been sat around for and not to reheat rice but that's it.

He now has a match for his stem cell transplant and they had booked him in for early December but have decided they will try and move it back a bit because they aren't convinced he will have the best from the second stage of treatment if the transplant is that early. We are so grateful that there is a match though.

I'm so pleased to read that you are ok now, congratulations! Do you still have to have check ups or is that you and hospitals done now?

Lscd

Hi MinVi,

Thank you for your message, gosh our stories sound so similar (with the exception that I am not pregnant) Well done you for getting through it all, your strength sounds amazing! Thank you for your kind words and the hug! I needed that.

You are absolutely right, my son is my strength and I have to keep strong and going for him. It is so hard trying to be positive sometimes but I look at his face and realise what I have to be positive about.

We are now into phase 2 of the treatment and it is soooooo much harder than phase 1. I think it's harder for my husband being home and having to go in for daily chemo but also working out how the house runs now. It's taking a bit of adjustment for both of us!

How is your husband since his stem cell transplant? Is he recovering well? I do hope so.

And I also hope you are ok and not feeling as lonely. Having a baby is lonely enough without having a husband who is sick on top of that so I really understand the loneliness. 

Please feel free to message me if you ever want someone to chat to, hard with babies and children I know but please know I would respond x

Hi Mike,

Thank you for your message and sorry I have been so slow to reply! 

Thank you for all the useful links and help.

I do hope you are ok now.

Lscd

Hi again Lscd, never be sorry about a slow reply.... your life is challenging. 

Great that you have connected in with a few folks...... I see that your husband is heading onto the Allo (Donour) Stem Cell Transplant Roller-Coaster....... I know this ride very well as I have had 2 Allo (Donour) Stem Cell Transplants (June 2014 then Oct 2015).

The Stem Cell Transplant journey is rather unique and brings its own challenges.... with this in mind you may want to join and post in our dedicated Stem cell transplant support group.

You will connect in with others like Paul and myself who have been through the SCT process or with family who have supported family members on the process.

How am I doing?....... I am doing great, just had my 7th Stem Cell Transplant Re-birthday last week and have been in remission for over 6 years now and living the dream.

I will keep an eye open for you in the SCT Group.

Hi Lscd

Pleased to hear that your husband is doing well and that he is happy for you to get out and about with your son.

I remember being given a list when I was neutropenic and Blood cancer UK have a list that you can access by clicking HERE

I still have check ups with my teams but they tend to be phone or perhaps annually at the hospital. Bloods taken to make sure I am still doing fine. My immune system is a bit low so I tend to get bloods done every 3 months to keep an eye on my Immunoglobulin counts but it doesn't seem to cause any problems. I haven't been in hospital overnight since 2013 for anything.

You can read my journey here on PAUL'S PROFILE

I hope the stem cell transplant goes well and if you have any questions feel free to ask.

Hi my husband had t cell all what is the banned foods list please no one has advised us about this. Only diagnosed in February so it’s all still very new and overwhelming

Part of the way chemotherapy works is it kills fast growing cells but also some of your healthy white blood cells (neutrophils) that fight infections.

The dieticians in my unit said that food safety and hygiene are very important…… and why take the chance of developing a food based infection during treatment. A small food bug for a healthy immune system is not a problem but when the immune system is reduced problems can come along.

These were the tips I was given:

Shop smart – Check foods are in date.

Make sure you get the chilled and frozen foods home quickly.

Prepare and clean up - Clean hands and the kitchen.

Use separate chopping boards for raw and ready to eat foods.

Prevent cross-contamination - Separate raw meats, chicken, seafood from ready to eat foods in the fridge.

Cook food properly, piping hot throughout.

Eat out in clean places and make sure your food is hot.

Don't have carry out food as you can not control it.

Eat

Meat, chicken and fish cooked through

Pasteurised milk

Cooked eggs with a firm yolk

Washed fresh or cooked fruit and vegetables

Hard cheese or soft cheese made from pasteurised milk

Vacuum-packs meat, ham.

Re-heat cold rice till it is steaming all the way through.

Some foods have a higher risk of becoming tainted with bacteria. Here are some foods you might want to avoid.

Avoid

Raw or undercooked meat, chicken, fish and no shellfish

Unpasteurised or raw milk

Raw or undercooked eggs

Unwashed fresh fruit and vegetables

Soft cheeses made from unpasteurised milk

Uncovered deli meats

Cold rice

To limit your risk of infection from food:

• Cooking food (eggs/meat/fish) thoroughly and having good hand hygiene.
• Avoid cross-contamination between cooked and raw foods
• Wash fruit and vegetables well
• Avoid unpasteurised cheeses and milk
• Choose pasteurised milk, yoghurts and cheese
• Ensure that food is in date
• If having cooked/cured meat, opt to vacuum packed and not from the deli counter.