My husband was diagnosed with Acute Lymphoblastic Leukaemia 9 months ago. It has been a real rollercoaster of emotions and treatment. We thought he was doing really well but he had what we thought was a small stroke a couple of weeks ago but the cancer is in his brain and is untreatable . It seems we are at the end of the road of his treatment and they have offered steroids to reduce swelling and palliative care. They have said 4-6 weeks. To say we are devastated is an understatement how do we cope.
Tomorrow our clinical nurse specialist is contacting us to discuss end of life care and put us in contact with McMillan nurses.
Its our daughter’s birthday today so we are not telling family yet don’t want to spoil it for her.
I want to scream and cry but trying to be brave.
oh @summer123 please scream and cry with us on our forum and I am sure that the Blood Cancer UK support line is also there for you too to use however you want to.
It is difficult to find words to say, I just cannot imagine how you are both thinking and feeling.
I can understand you not telling family today as it is your daughters birthday, but when you feel it right to tell others perhaps accept every bit of help and assistance from everyone.
In my experience you can only be brave for so long.
Please do let us know what your Clinical Nurse Specialist says and I have heard that the Macmillan Nurses are wonderful.
Really look after yourselves and be kind to yourselves and please do keep posting.
Oh @summer123 I am so incredibly sorry to hear this - I can only imagine what you must both be going through. Our support line is here for you if you need us on 0808 2080 888. If there is anything we can do to support you, your husband and your family, now and going forwards, please don’t hesitate to let us know.
Hello Summer123, I read your post with sadness and I am so sorry for all you and your husband are dealing with, as you said both feeling devastated. You will get much help from Macmillan - they have so much experience in the whole thing both for patient and those closest to the patient and all the realm of feelings that go with a difficult diagnosis. Please keep coming to this forum to let us know how things are for you and feel free to explain all the things you are facing, if you wish to do so. I hope precious time and moments can be spent for you both in these days ahead, time to talk, share, remember - and I send my thoughts and care to you both
I don’t know many coping strategies for your very sad situation, @summer123, except perhaps having a cry and a scream when you have some privacy/the right moment.
When a friend of mine was living his last weeks, we reminisced and laughed a lot, and because he was at home, I was kept busy with some elements of his care. That helped a little. But of course losing someone precious is not easy, whatever you do.
I’ll be thinking of you and your husband. I hope you find a way. X
Hi @summer123. I don’t know what to say but just wish there was something we could all do to change what is happening for you both. Like the others, I can only imagine what you are both going through.
I’m sure your family will be a great support once you tell them - I know how difficult that will be.
We are here for you both. Sending a really big virtual hug. Please take care and when you want to share anything with us, you know where we are X
Hello @summer123 I’m so sorry to hear about the news of your husband. As @Erica has said do scream and cry and do whatever you need to do. You are there caring for your husband and it’s important that you also get all the support that you need for yourself. Take care x
Thank you all, we have now told our children, that was really hard. My husband ask me tell them away from him, he has said he doesn’t want tears he wants his last weeks happy with laughter and to create some memories for everyone. He is feeling really well at the moment in fact he doesn’t look ill at all. He has decided this weekend we are going to a lovely country house hotel near Stratford upon Avon only 20 miles from us for one night. I cant believe it!
I spoke to our clinical nurse specialist today and she is arranging a meeting for District Nurses/ McMillan nurse to come to us next week.She also spoke about all those conversations you think about having, to make sure you are not too late. We sat in the sunshine in the garden today and I tried to tell him how happy he has made me for 39 years, we have had a good life, two beautiful children and grandchild, good friends, lovely holidays and special times but all I could do was cry. I will try again.
Even more I am thinking a day at a time and make each day precious.
Thanks again for thinking of us.
A day at a time sounds just right. I can imagine how emotional it must have been telling him how happy he has made you. Perhaps you could write it instead if it’s hard to say. It bought tears to my eyes reading how special your marriage has been. You can tell what an amazing relationship you have!
Telling the children must have been so hard for you. How are the children doing?
You must be exhausted - the night away sounds like just what you need.
I’m really glad you will have support. It must be so hard to think about all the things you want to do and conversations you want/need to have so having guidance and support throughout this will be so important.
Thank you posting today when you have so much else going on. I know I have been thinking about you and your family lots today.
Sending lots and lots of love X
Yes, a day at a time and make every day special sounds good to me too and making memories.
I am so glad that you and your husband can honestly talk to each other, it is so important.
I just cannot comprehend how difficult it must have been for you to tell your children and I hope they are alright.
What a great idea to go to a lovely hotel for the weekend.
We are here for you both.
Have lovely pampered weekend and spoil yourselves.
So sorry to hear what you are going through, I can’t imagine how hard this must be.
Thinking of you and sending big love 
xx
My heart reaches out to you. I have Chronic lymphocytic leukaemia (CLL) but am not critical healthwise. My mother’s final diagnosis, that there was nothing they could do as it was in her brain sounds similar and the devastation we felt. Looking back I can honestly say it was a privilege to share her last few weeks. I moved in with her and Dad; told work I would stay as long as I was needed and would hand in my notice if they wanted but they were fairly supportive. The help around from Macmillan nurses and Marie Curie was crucial. One of the benefits I didn’t appreciate at the time was that without them we were taking it in turns to stay with her but the nights Marie Curie came allowed Dad and I and eventually my sister who came from Canada to communicate with each other and share stages in our grief. If we took it in turns to be with Mum then conversation between was harder. At times there were very special moments which I now see as gifts at a difficult time. The end was peaceful and possibly has helped make me face death more pragmatically. I hope there is good support for you and yours and you find little oases of calm or of positive memories. Be kind to each other as we all grieve differently and possibly the most important thing is to allow each other those differences however odd they may seem to the rest of you. My prayers and good will are with your family.
Oh Summer123, I am so sorry to hear this news about your husband. I can relate to not being able to get the words out that you were wanting to tell him without crying. I tried to do this with my dad and couldnt so I ended up buying him a card and gave him it in writing!! The important thing is you love him and he loves you and nothing will ever change that. I hope you managed to get to the country house hotel at the weekend. Cry, shout, scream and rant on here any time you need to. You were a great support to me on here when I was worried about my husband (the one with the gout) . Take care xx
So sorry to hear your news @summer123 . I will be praying for you & your family for increased strength at this most difficult time.
Hi @summer123 I have been thinking of you both loads and just wondered how you are both doing?
How are you, you can be really honest with us on here.
Sending you both loving vibes xx
Thank you everyone, we had a wonderful weekend. We have now told all extended family and friends which was hard but at the moment inundated with people wanting to come and see us. This is difficult I know his brothers, sisters, cousins and friends want to see him but we can’t have visitors all the time, aswell as nurses, GP and carer all calling in. At the moment he just wants to be with me, son daughter and granddaughter who are all being brilliant.
He is still feeling well except tired but I think the steroids keep him awake at night. I constantly feel sick and shaky I think I am still in shock. Also if he is not sleeping neither am I so I am tired.
He is getting a bit fed up of me constantly asking how he feels. We keep saying we are taking a day at a time but I can’t help thinking about the days and weeks ahead, He says he feels resigned to his fate and not afraid just worried how I will cope. I say to him I will be fine but inside I am terrified and keep thinking I won’t want to go on without him but I will for our children and grandchild.
Thanks for the update @summer123 , such a difficult time and I can understand the relatives want to visit but, visitors, however much you love them, are so exhausting.
I reckon that you are right that you feeling sick and shaky is the fact that you are still in shock and also exhausted with everything that is going on and lack of sleep.
I bet it is such a temptation to keep on asking asking your husband how he is, you are doing it from such a loving, caring angle and he is getting a bit fed up with it.
Personally I think all you can do is take it a day at a time and do what you both want to do.
Be kind to yourselves and please keep posting.
Sending you both so many loving vibes xxxx
Well we are 16 days in from the 4-6 weeks terminal prognosis. I can honestly say he is felling better than he has for a while. The palliative care nurse calls in but says he is well, in no pain and quite active and doesn’t need extra support at the moment. They have adjusted his steroids and he takes them after breakfast and after lunch (instead of evening) this helps with him sleeping at night. He has a terrific appetite (side effect of steroids) and is really enjoying his food. We go for walks in the park, friends have taken us out for lunches and dinner and we spend time with our granddaughter. Family got him VIP tickets for a football match last Saturday which they all enjoyed. Later today with our Son, Daughter, Son in Law and Granddaughter are all going to stay in a luxury lodge near Matlock Derbyshire for the weekend. So I can say luckily at the moment he is enjoying life and creating memories. Just hoping and praying this continues for a few more weeks.
It’s really great to hear from you. It’s sounds as though you are making some amazing memories to be treasured. And how are you doing? X
Oh @summer123 I am so glad that your husband and you are both able to do lovely things with family and friends.
I think in a way it can act as a slight distraction and creates very lovely memories.
Perhaps try and keep it in the day, enjoy and take loads of lovely photos.
How are you doing?
Please keep posting