My has AML FLT 3 ITD blood cancer. We are currently in search of a donor. The search has been on going for 6 months. In a year we have completed 1 induction round of chemotherapy and 4 rounds of consolidation chemotherapy and he was also on oral target therapy. 4 months after the last chemotherapy he relapsed and definitely needs a bone marrow transplant in order to survive.
I am coping ok mostly with the occasional down days but I am not concerned about myself as I know I am and positive person.
My biggest concern is my Fiancée as he is struggling a lot as you can imagine. He has never really been ill before so this is a massive blow to him. He is fearful and angry and sad.
The thing is I worry about is that sometimes he is so angry and inconsolable. Therefore I am looking for tips on things I can do to help during this time. This is what I do so far:
I have been by his side throughout the treatment and even sleep at the hospital every night as he is to sad to be alone. I spend all my time researching treatment and cheering him up. I sing and dance around the room and try to have him laughing as much as I can when we are alone. His family do come during the day and are lovely and we watch tv together etc…we also practise mediation together.
Any tips would be much appreciated !
Hi, @taz_11, thanks so much for joining our forum, you have come to the right place, we are here to support you and the Bloodwise support line and Samaritans details are above. I think the job of loved one and carer can be so, so difficult and often a very thankless task. I expect you are trying to keep ‘all the plates spinning’ and dealing with your thoughts, emotions and practicalities as well.
What I have found is that everyone deals with issues in their own unique way and hardest thing is that I have realised I cannot change the way another person behaves, thinks or feels. When I was diagnosed I was in such shock, I felt I was the only person in the world in my position and I had so many emotions and thoughts flying around in my head and fears about the future. I could only see things from my position and I did not think how my husband was thinking and feeling and I also found it so easy to take my emotions out on him and he took them all inside. In retrospect I think appropriate counseling would have helped me, I do not think he would have gone to counselling. I also found that giving each other just a bit of space might have helped because he hates to feel watched or thinking he is being controlled. Words can really hurt me when I am feeling so under appreciated. Have you any friends you could have a coffee with or have some extra bubbles in your bath. Please use this forum to share your innermost thoughts, feelings and practicalities.
Hello @taz_11, I have asked other Bloodwise ambassadors what helped them. Anger and frustration are common when given a diagnosis and when you feel as if your life is out of your control. I found that some medications, especially steroids, made me moody and short-tempered. Your fiance is also probably afraid of what the future holds, whether a donor can be found in time.
Several people have said how useful speaking to their Clinical Nurse Specialist or the hospital psychologist helped.
Some areas now have a Maggie’s centre where you, your fiance, and his family can get help and holistic and wellbeing treatments. Also check with your local Macmillan group for what is available there.
I hope these suggestions and those of Erica help.
Look after yourself too, occasionally seeing other friends so that you can also be supported
Hi @taz_11, I was in a similar situation to your fiancee (AML FLT3 NPM1). I relapsed just a few months after achieving remission too and had to go through more chemo and a stem cell transplant. It got quite scary for me for a while because I became resistant to chemo and couldn’t get back in to remission in order to have the transplant, but fortunately my consultant suggested an alternative targeted therapy which worked for me. I had my transplant 4 years ago and I have remained in remission ever since.
I don’t remember feeling angry, but I was certainly scared! I took comfort from reading stories of other people who had ‘been there, done that’ and while we all have a slightly different treatment path we are all going through a similar rollercoaster experience.
I don’t know if you use Facebook at all, but there is an AML FLT3 group (AML FLT3 Survivors, Warriors and Caregivers) where you might can speak to others, like myself who can relate to what you and your fiancee are going through.
Best of luck to you both
@Erica Thank you so much for the detailed and warm response. That is exactly what I think he feels, as you said ‘I was in such shock, I felt I was the only person in the world in my position and I had so many emotions and thoughts flying around in my head and fears about the future.’ I can’t even begin to imagine the feelings honestly. In your opinion when someone is feeling the height of all these emotions and is angry or teary What is the best responses: try and give them a positive supportive talk and encouragement or just hold them and let them feel all these things?
Fortunately or unfortunately for me he likes me around 24/7 haha and doesn’t want space at all (we are very opposite like that). I have booked myself a facial coming up soon though so I am trying to look after myself
I think counselling is one of the most important things in situations like these for all parties. I am looking into it for myself as I have also just experienced the death of my father. He comes from a very traditional family where they don’t usually believe in counselling but I am slowly convincing him that it is the best thing to do.
@Pisces56 Thank you so much for suggesting all of this. I completely agree and truly believe that speaking to a psychologist would help in this situation as his family and myself with all our best intentions and advice are not enough or as equipped as a psychologist would be. We are both British citizens but are in Hong Kong at the moment receiving the treatment. We both had jobs lined up in London when all this happened and the need for chemotherapy was very urgent and his family are here which led to the decision to remain in HK for part of the treatment. Unfortunately hospitals here don’t really have any counselling services available. Even the bedside manner is very different and quite harsh-they have a very matter of fact just get on with it attitude which is not comforting at all. We are looking to move to London mid treatment and I believe most hospitals there have such services so I will definitely make sure we make use of them.
Hi @Jane , first of all congratulations this is amazing news for you!! You went through one of the hardest battles and won it makes me so happy to hear even though I don’t know you.
Can I please ask what kind of target therapy you were on? He is also on a trial target therapy that is available in Hong Kong but no longer available in the U.K. I know target therapies are tailored for certain mutations therefore he won’t be on the same one but I am just curious.
I have suggested that he speaks to AML survivors as they can probably be an inspiration to him however for some reason he doesn’t seem that keen. I think he is so scared he has buried his head so far in the sand that he doesn’t want to know anything to do with AML. He wouldn’t even let me say the word disease or cancer for 7 months and he doesn’t want to know anything about his treatment or AML. Therefore I spend a lot of time researching just so I know everything that is going on, possible treatments and how to handle side effects etc…I will definitely look at that group on Facebook though as I think it can be extremely helpful to relate to people going through the same struggle.
I wonder if you have had a look at publications on the Bloodwise website? As you are in Hong Kong it may be better if you download them. There is information about AML, but also other info about diet, bone marrow transplants etc
There is a saying that says ‘we always take things out on our nearest and dearest’, fear and anger are so common. I was brought up that fear and anger were negative or bad emotions and therefore ‘good little girls’ didn’t have them, and I sure strived to be a ‘good little girl’. I have now learnt that actually holding those and all emotions in can be a lot more detrimental to my health. Personally and it is personally I just want to be held and listened to and be able to say how I really feel with someone close and that we can discuss what it is like being me. Also counselling was so helpful for me. Being in Hong Kong must also bring up so many emotional and practical issues for you both. The value of this forum is that you could be anywhere in the world and we are still here to support you. The Bloodwise support line is also there for you, details above, but there might be a phone charge. The role of partner or carer is so, so hard so keep posting. Oh, that facial sounds good to me.
Good morning everyone!
I hope you’re all okay?
@Erica that’s very true the lovely thing about this forum is that it is open to anyone, anywhere.
@taz_11 Wishing you a very warm welcome to the forum You sound so incredibly supportive to your partner, but it is also really positive that you are making time for yourself too- enjoy that facial!
We often do have people getting in touch with us, talking through how they deal with strong emotions like anger. Some have said finding a way to express their anger in a safer way, whether that is doing a form of exercise, or playing loud music or even painting/drawing wildly has helped them.
Others talk about keeping a diary of when they tend to experience such emotions the most, and use this to try and look for any triggers.
There’s no right or wrong, but hopefully it you gives some ideas as to what you could do?