Thanks for the update @Toadmum sorry to hear you have had a cold, but a visit to your husband has perked you up, especially as he is doing well.
Be kind to yourself
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No real news here, although getting closer to bone marrow biopsy. Counts are rising. Weāre not sure if they will do biopsy on Friday or Monday. Waiting for them to decide, and new PICC line will go in ready for chemo again at some point next week. He finished his first course of the oral chemotherapy yesterday so another mini milestone ticked off. We think he may be coming home again this weekend for attempt 2, where they will discharge him hopefully until chemo starts but Iām sure the plan will come together in the next couple of days. His consultants and nurses are just wonderful so we are simply doing as we are told.
The kids and I are doing OK. Weāve taken to talking about our (their) worries each day to see if I can carry them in my worry bag so that they donāt have to. Last night at bed my youngest said she was worried that:
- dad was never coming home from hospital
- that dad would stay in the hospital forever and ever
- that dad would die in hospital
- that I would die before him (Iām a year older) and then they would have no one to take care of them
Poor little thing. Hoping that if he is able to come home for a few days or so, and get into the rhythm of doing some things as an out patient, that it might help relieve a little bit of some of these worries. It hurt my heart to hear her worrying about these things, and Iām still finding it hard to answer in an honest way that doesnāt worry them further, but also doesnāt result in me making promises that I canāt control.
Lots of love to you all today. Hope everyone has a good day.
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Hello there, i read your message and didnt want to pass it by. Different blood cancers but similar worries for my lovely boy who was just 7 when my hubby was desperately ill. I too was conscious of not making promises i couldnāt control, i took that responsibility very seriously. Like you, all i could do was create as much safety and security around him and promise Iād always listen and would tell him the truth. My boyās biggest worry was that, while his dad was in hospital, Iād wake him for school one morning and tell him daddy had died. We talked long and hard about that one. He went to sleep that night quite āhappyā while i thought my heart would never be pieced back together. I think Iām still a little wounded from those chats.
I apologise that Iāve made this all about me. I really just wanted to say what a great job you are doing, how lucky your family is to have you holding them up and that i send my every good wish. Ive been there, i know the pain and hold you in my thoughts
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Oh @Toadmum I cannot better @judesadventures very personal post.
I am so impressed with your youngest being able to say her worries to you and it also says a great deal about you as a mum.
I also think that your worry bag is a really good idea.
I think it will hurt your heart which is already probably already hurting
Yes, lots of love and you need a place to dump the contents of your worry bag too, perhaps it is virtually on our forum.
I think it is OK to say that you just do not know. xx
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Hi @Fifimac
How are you after the bmb? A llittle sore, maybe? I hope it wasnāt too traumatic.
I know - after all that weāve been through, it seems an age before we can dispense with all these further little tortures like unpleasant tests and awaiting results. Itās a further and unexpected burden. Itās a times like this when one is tempted to say the phrase with āfairā and ānotā in it!!
I know - our whole household basically broke down! We had to have a new boiler, but we knew this day was imminent anyway, and weāre glad we have a brand new, more efficient and reliable heating system at the beginning of winter. Maybe youād be surprised to hear we get quite horrible winters here - extremely windy and wet much of the time, which makes you feel cold even if it isnāt the lows in temperature Scotland gets. So - phew. Weāre warm again.
Hope youāre keeping warm and managing not to worry too much. 
X
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Hi @Fullofbeans
Iām good thank you and bone marrow test was fine thankfully. I must be one of the luckier ones ( if you can call it lucky ) but up to now I havenāt found the actual procedure too painful. Definitely would not want one every day of the week, for me itās bearable but uncomfortable, worst part is local anaesthetic going in.
In Glasgow they give you Gas & Air which is a bonus but here in Fife they donāt.
Iām glad to hear you have a fully functioning heating system again. Just in time for the wet, windy and very cold weather.
I have put my ā teddy bear fleece ā duvet set on the bed and boy is it cosy.
Well , I have a Dental Check up @ 08:30 today so I better get moving.
Thank you for messaging, take care.
Best wishes x x
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Hi @Toadmum
How are you ? Did your husband get home for the weekend ?
Youāve had an emotional week , itās heartbreaking trying to explain to the children what is happening with their Daddy but I think as long as they know roughly that somethingās is going on , itās easier for them to process.
Itās so hard on you carrying all the weight on your shoulders , I hope there are family or friends that you can offload to aswell.
Please take care and I hope the weekend goes well for you all 
Best wishes x x
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@judesadventures thank you for taking the time to post. I canāt tell you how helpful and reassuring it was to me earlier this week! Iāve just tried to answer as honestly as I can, and to not dismiss their worries.
@Fifimac he didnāt get home last weekend, well he did but for an hour. I got him home and he just seemed a bit peaky so I kept taking his temp and lo and behold, it was circa 38 so we went straight back to hospital. He spent 7 days on antibiotics and they removed his PICC line as the infection tests picked up E Coli. Thankfully, apart from when I brought him back in and he had a fever, he felt pretty well all week. We tried take two yesterday and Iām pleased to say that he came home, AND has been able to stay home. Hopefully, if he stays well, he will be home for circa a week before starting next cycle of chemo. We will take it day by day and are back as day patients a few times for bone marrow, new PICC line and bloods etc if needed although heās been making his own RBC and platelets so thatās been great.
We are doing nothing and itās been lovely to see him home. He was able to sit in a chair in the fresh air and watch our son play sport this morning. Heās in good spirits but I can completely see that being out must be so good for his own mental health so Iām pleased he has been able to get home before starting the next cycle.
Hope you are all having a lovely weekend and have some nice plans? Isnāt it suddenly super cold!
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I also realise I didnāt answer your question about me!
Iām doing OK - sometimes good but I sometimes feel a bit weird saying good, given the situation. I felt really drained last weekend and have tried to be very kind to myself this week. It is really nice to see him at home. It has been just over 4 weeks now since we started on this journey and in a way, Iād forgotten how nice it is when we are all home.
Feeling a little bit anxious for this week as it will be our next bone marrow biopsy, but actually, it doesnāt make a huge difference at this point I guess. Heāll still be doing chemo, it just might impact the type of chemo he is having. Having a glass of wine this evening, and whilst I donāt usually drink a lot, itās little things like thinking that I canāt have more than one incase I have to drive him somewhereā¦ such a small thing but another thing to have to be mindful of. Not sure if that sounds crazy or not but hope it makes sense!
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Hi @Toadmum and @Fifimac that is wonderful news that your husband is home this weekend and that you are doing nothing, sounds good to me @Toadmum.
You also describe so well where your thoughts are whizzing to. I think that is completely natural, my thoughts and emotions have been all over the place since I was diagnosed 19 yrs ago. Before that I took things as they came and went through life on autopilot with a sort of certainty to the future.
So you do make sense.
Enjoy your weekends all of you
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Bone Marrow done yesterday and preliminary results indicate that he is not yet in remission.
We actually happened to be on the way back to the hospital with a little temp so looks like weāre navigating another infection and preparing for the stronger dose of chemo for cycle 2.
Plus side is that weāve had 4 days at home which were really nice for us all. Will keep you posted on how the next few days go.
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Hi @Toadmum sorry to read that your husband has a possible infection. In my experience of Acute myeloid leukaemia (AML) in Feb 21 I had about 5 periods of about 10-11 days in hospital with infections on top of the 4 periods of chemo stays in hospital. He will be in the best place. Iām glad heās just had some time at home, that was always superb for me after spending long periods of time in hospital, the simple things become so important during this journey. Wishing you all the very best and please keep us updated as and when you can
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Oh @Toadmum so sorry that you are both going back to hospital with a possible infection, you are doing the right thing.
Yes, the plus side must have been wonderful for you all to spend time at home, it is surprising how lovely your own bed is and as @Suenew1967 says the simple things.
Please do keep posting and all of you really look after yourselves
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Hi @Toadmum
So glad that your husband managed a little time at home. How were the kids ?
Itās a definite rollercoaster ride, and infections are par for the course unfortunately.
Good Luck with next round of Chemo 
Hope youāre managing to get some rest yourself or at least time to enjoy your favourite hobbies.
Best wishes x x
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@Fifimac me too. The kids thoroughly enjoyed it. I can see it was good for them, me and him!
They canāt seem to find an infection but he does still have a temp. They think this should go tomorrow when he starts on day 2 of Flag-IDA. Heās feeling OK just getting annoyed with the up and down temp / shivery to hot and sweaty.
I didnāt visit yesterday as the day before felt so intense but I am visiting this afternoon and staying for dinner which will be nice. I always feel better mentally having visually seen him in person. Weāre not really sure what to expect with Flag IDA but we will take it day by day and see how it goes. I will post here as it is SO helpful for myself but maybe helpful for someone else in future too.
Lots of love!
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Hi @Toadmum
Hope your visit went well today and you managed to enjoy dinner together.
Iāve never had Flag-ida so cannot comment on it.
Hopefully it will have the desired effect with as little side effects as possible.
Everyone reacts differently to chemo.
Best wishes and yes , do keep us updated on your husbands progress please. x x
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Thank you. The visit was lovely and just hung out for some moral support and company as we embark on chemo 2. Today was day 2 out of 5 for chemo - very, very strong compared to the previous cycle. Lots of supportive meds to take including the usual anti sickness etc, but also extra things for gums, eye drops etc due to strength of chemo. Side effect at the moment is a cloudy head in the afternoon. He is still eating but I think heās forcing himself to as his gums feel sensitive.
Things going as well as can be. A tough day in some respects as it was one of our kidās birthdays and that was hard for us here but quite tough for him I think. I also put up the Xmas decorations yesterday with the kids - another first alone which I hope is temporary.
Feeling grateful for
- friends and family
- Xmas lights on tree
.- wonderful doctors who take care of husband - heated blanket
Given it was emotionally hard today, we will visit tomorrow which will hopefully be good for us all in different ways. This time of year feels tough to be navigating Acute myeloid leukaemia (AML), especially with kids. Trying to reframe that to say that weāve successfully navigated quite a lot of this period which is busy and intense, without cancer, and doing a good job of it all. At the very least, weāre ticking off days of treatment.
Hope everyone has a lovely rest of the weekend.
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You show so clearly @Toadmum how you are torn in two, one supporting your husband and the other supporting your children.
Perhaps there is a third side of keeping the home going.
I hope there is a forth side where you can just take some time for yourself
I am also a great one for reframing and feeling grateful for and I love your gratitude list.
I also put our decorations up and the relief to find they were flashing away.
Your gratitude for friends, family and our wonderful medical services, they are all so priceless.
Thanks so much @Toadmum I learn so much from you.
I am a reframer, but I need to be reminded sometimes.
I hope your family visit goes OK today.
Be kind to yourself too and keep posting
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Family visit went well and the kids and I went for McDonaldās on the way home and then I lit a fire and we chilled out. It was my first ever log burner fire that I lit - very pleased with myself. I know that is a small achievement but this is usually something that the husband does so another first for me.
It is such a tricky balance with all of the different responsibilities in life at the moment. I havenāt quite got it right on a daily basis but it seems to somewhat balance when I look back at the week / month.
I am still making time for myself - sometimes nice things and sometimes just doing chores or tasks that I have been putting off.
Iām visiting this morning and staying for lunch as husband is on day 4 out of 5 and I think the morale support is good for us both. Heās doing such a great job. He and I can definitely see the impact it is having on him, compared to the first chemo which he just had no side effects on. Hopefully this might mean itās doing what it needs to be doing. Main side effects for him are fuzzy head, bit of a headache after one of the drugs, tired and he says his senses / hands / fingers just donāt quite work as efficiently as normal. No sickness or anything but I think this is all thanks to the medicines they are giving to help manage. Also very sore gums now, painful to eat although he is forcing himself to keep eating.
Last day of chemo tomorrow for cycle 2, although the day after he will finish the stomach injections. We anticipate another cycle of FLAG-IDA in very late December or early January but will see. Navigating a bit of anxiety for the next bone marrow results but ultimately got a good few weeks to get through first.
Thinking of others going through the same or similar journeys and sending lots of love.
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Hi @Toadmum
Good to hear your update. Sounds like this is a tough round. My daughter had the high dose cytarabine and had similar side effects as your husband. I bought her an extra soft toothbrush so she could still brush her teeth. The eye drops they gave her really helped too. Itās hard to see the āmedicineā cause such awful side effects huh?
Take things easy over the next few weeks. Christmas will happen and I am sure your children will gain pleasure from you all spending time together. I took in some board games to play with my daughter. To revisit Ludo, Guess who and Connect 4 was brilliant and would pass the time and lift moods.
Take things easy and do keep posting
Sarah
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