It seems like a lifetime ago that i first messaged on the forum but in reality it’s been less than two weeks. In that time my wife has finished her first round of chemotherapy and is now in the very vulnerable stage where she has no immune system. They are treating her with antibiotics to try and minimise the risk of infection.
When we first received the diagnosis we thought that was possibly the worst thing that could ever happen but it’s only one of the terrifying stages on the journey. Next is chemotherapy - slightly less terrifying than leukaemia but still a lot to take on board. Then they tell us that that is just the start and that the stage we are in is the most dangerous stage - any infection is bad news. Wow, we just learn to come to terms with one thing and then they hit us with another. I’m just staggering along putting one foot in front of the other.
My Wife is in fairly good spirits, i mean, what can you do? She’s the one who has got to deal with this physically and i don’t know how i works cope in her position but i think she’s incredible.
All we can do is trust in the doctors and nurses looking after her - they are amazing - and hope that we can get through this.
Hi @Mabel2025 so glad that you have posted again and I reckon you have the right idea with one foot in front of the other and I would add a day or hour at a time.
So glad that your wife’s medical team are amazing.
Be very kind and really look after yourselves and keep posting . You can say how it really is for you on our forum which helps me.
How are you doing? My husband had Acute myeloid leukaemia (AML) and I remember being terribly frightened by the prospect of him coming home from hospital and me being the responsible adult. At the same time, we were desperate to have him home. Our whole treatment journey was such a rush of conflicting emotions.
We used to take it maximum a day at a time - particularly in that period between chemo & counts rising. Sometimes it was in minute increments during tough times though! Before this experience, I would have put money on the chemo bit being the toughest but that Neutropenic period is so hard on both patient and family members!
We are now almost a year out from transplant and I’m pleased to say that in many ways it is feeling like a distant memory. Be kind to yourselves - this too shall pass.
Thank you so much for your message. My wife has been home from hospital for a week now and it feels so good to have her home.
We are the hospital three times a week for blood tests and her blood count has been rising steadily this week. She is tired quite a lot of the time, which is understandable, so spends a lot of time just resting.
It’s hard to explain my feelings at the minute. I’m 100% supportive of my wife and do whatever it takes to make sure she is OK. I do find myself getting frustrated and angry at certain things. The time that the hospital lost my wife’s blood so we were sat waiting for four hours. Or the way she was dealt with when they discharged her from hospital. Or the helplessness I feel when she asks me if she will survive.
I just need a good night’s sleep and then go again tomorrow.
Oh @Mabel2025 it must be so so hard for you as I expect you might be emotionally, physically and practically exhausted and I find that when I get like that all my thoughts and emotions are going all over the place.
I keep going and keep going whilst everything is hectic and then when things calm down a bit those emotions come out.
Actually I reckon that you are actually helpless in so many ways.
You probably need more that a single good nights sleep.
As you have done please do use this as a safe space to say how it really is for you and perhaps try and take it a day at a time.
Give yourselves time and be kind and really look after yourselves.
I’m so glad that she is home. The tiredness sounds quite like my husband for a long time.
How you are feeling personally sounds SO normal. You are navigating something that most people will never experience, nor comprehend. It is a lot to deal with for one day, let alone a prolonged period. I felt exactly the same - and sometimes still do. I think finding way to just acknowledge and feel the feelings without justifying or trying to remove them or fix them is super helpful.
Do you have time for yourself personally? Is there anything you can do for yourself whether it’s for 15 minutes or an hour or so? Exercise? A movie? Walk with friends?
I remember crying one day at the hospital when there was a blood shortage. Instead of 4 hours, we must have spent 12 hours at the hospital. It didn’t matter really - work were fine, my kids were safe with grandparents but I felt so inconvenienced and angry and I sobbed all the way home in the car. It probably wasn’t the late blood bag, it’s just the whole situation. I think it’s natural that the emotions might pop out when we least expect them.
Anyway, you’re doing such a wonderful job - both of you. Sending you both lots of love. Be kind to yourselves.