Hi @summer123. It’s really lovely to hear from you. You and your family are never far from my thoughts.
Wow, you really are making the most of every moment. How lovely that you are attending so many celebrations and treating yourselves to cocktails on the terrace. I hope the sun was shining brightly! Off course it’s so hard not to count those days but with each one that goes by you are making so many memories. How is your husband in himself?
I am so glad your GP is looking after you. You need somebody to check that you are ok.
Like you said - your son is fine and I’m sure he is where he wants and needs to be.
Enjoy those jubilee celebrations. I’ll raise a glass to you and your special family.
Sending lots and lots of love. Please take care X
Wow @summer123 I am completely worn out reading you and your husbands adventures.
I am so glad that you haver such a good consultant and GP.
I am also so glad that your GP is also looking after you and I bet you are stressed, plus a lot of other thoughts and emotions.
Enjoy your Jubilee weekend, celebrate it in style.
Spoil yourselves
So glad you are both able to do so many enjoyable things and hubbys health enables it to be possible - precious things - I appreciate too for you it’s enjoyable yet with much going on for you under the surface so I am glad GP is keeping a good eye on you and directing you to the right people to support - all the best
Well we are at 8 weeks since the terminal diagnosis. We have had a lovely 6-7 weeks doing lots of things and making memories. Unfortunately Jubilee weekend he started to feel unwell, we both and really bad colds and he started to get very tired. Then last Tuesday he had a further seizure, they upped his steroids to try and help his brain swelling but he has been very weak, his arms, hands and legs are very weak and shaky. He struggles even to use a knife and fork. He cannot concentrate and feels really tired and sleeps a lot.
I have been warned the end maybe quite close, I feel sick writing this. The palliative care nurse is on call when we need her but we are managing ok at the moment. He still keeps saying he is going to make Cromer!!
My head can’t understand this and I feel terrified, I am coping but don’t know how.
Hi @summer123. I’m so sorry he has now started to feel poorly. It must be very difficult for you to see and hard to be told what you have.
Your husbands sounds as though he is trying to have things to look forward to. Is he able to talk to you about things yet? I know it’s been hard before.
Make sure you call on the nurses when you need them. They will be a great support to you both.
It’s been lovely to hear from you. Thanks for taking the time to update us. You know where we are and you are always in our thoughts.
Sending my love to you, your husband and all of your family X
Oh @summer123 I cannot imagine what it is like for you seeing the deterioration in your husband, especially when you were feeling unwell too…
As @Nichola75 says please do use the palliative care nurses, they are there for you and please, if you can use us, we are all there for you too.
You can really say how it is for you on our forum and the Blood Cancer UK support line are there for you as well.
Be kind to yourselves and sending you much love xxx
Hi @summer123, thank you for sharing and I’m so very sorry to hear that your husband has started feeling more unwell now. Understandably it sounds very difficult and hard to process, and it’s very normal to be feeling scared at times like this. I can see so much support for you here. If it would be helpful to talk to our Support Team as well, we are on 0808 2080 888, and we’d be happy to support you however we can. Best wishes, Tanya.
Sorry Summer123 to hear how things are just now and i appreciate the bewilderment that comes when things suddenly deteriorate - I am glad you had the good times in recent weeks, very precious things and times that you will treasure. This bit is not easy and I feel for you, all you feel and think is quite normal because you are dealing with a very abnormal situation. As mentioned the palliative care nurses will give good professional help, they have much experience, do take their assistance whenever needed. All of us think of you and do keep coming here to offload anything at all.
Hi Jill
Sending love to you and your husband. You are in my thoughts and prayers
Debbie xx
Oh Summer 123 so sorry to hear about your husband and my thoughts and prayers are with you. I am very new to this group and had to reply as I was born and lived all my life in Cromer and do hope you make it to our lovely Town. You are so brave keeping the group updated on things and glad you are making memories. So much love coming your way, stay strong 
Thank you everyone you are all so kind and your thoughts do give me a boost, his spirits are quite good and I think he has been brighter the last few days especially as he can enjoy sitting outside.The nurse rang this week and he says we don’t need her. I have had to say to him that the decision has to be mine as I may need help and might not manage on my own. He was very sad saying he doesn’t want to lose his dignity.
Thank you @Lucky50 we have been visiting Cromer ( actually its Overstrand) on and off for over 40 years. Our friends had a caravan up to about 10 years ago and we had lovely family holidays. We have since visited on occasions when we miss it and stayed in cottages or hotels. He would love to go one more time.
Hi @summer123. I think understand why he may feel sad about it but I think it was really important that you said what you did. You will still be there for him, just may need a helping hand. Lots of love X
Hi Jill
I am sure that if the nurses knew how he felt they would be able to reassure him and give you that much needed support.
Debbie xx
Oh @summer123 it sounds as if you have had such special times in Cromer, we saw a brilliant evening at the end of the pier theatre.
I am so, so impressed with you telling your husband that the decision about the nurse coming had to be yours.
I would hope the nurse would treat your husband with dignity and if they didn’t I am sure you would be send them packing.
If you need it asking and receiving help is a great strength.
Be kind to yourselves and sending you both much love xx
Hi Summer123,
Having been in your situation, I empathise with you so deeply and just wanted to let you know that I have been thinking about you and your family a lot, and am sending so much virtual love. Look after yourself. xx
Thank you @Moo for your kind words. I have just read your heartbreaking posts from September and February. Some days I try to prepare myself for the inevitable but it scares me so much, trying to imagine a life without him is impossible. But reading your post from February does show me how strong people can be amid terrible grief.
At the moment he is on very large doses of steroids to try and reduce his brain swelling, I think its the steroids that are making him short tempered and snappy towards me which is not like him. I am trying to understand but it’s upsetting to see him like this.
Oh well at least its a lovely day and we can sit and enjoy the garden and a lovely friend made us scones yesterday which she bought round with some clotted cream. We will have them later.