Dear @summer123, thank you for the update and may I say that you are doing an amazing job in caring and considering all your husband’s needs. Hoping that you are getting some support too? Please do call the support line if you need to chat: How to contact Blood Cancer UK | Blood Cancer UK. Take care Gemma
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Hi @summer123 , I’m glad that you and your husband are able to spend special time with your family and friends. Take care of yourselves. x
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Thank you for your kind words. Our weekend was wonderful, a beautiful lodge in a forest near Matlock. I was worried as he pushed himself to do so many things, we swam, played crazy golf, walking in the forest, cable car up Abraham Heights, he insisted on being chef when we had a BBQ, fish and chips by the river in Matlock and lots of other things. But he coped really well, he is very tired today and we are just resting. I am very tired, I cope well during the day when I am actively doing things but at night I don’t sleep, I worry something will happen and I need to be awake. Also my mind is over active with everything that is happening and what will happen in the future.
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That sounds amazing and so many amazing memories for you all. Your husband must be exhausted but sounds as though he was in his element!
Night times are the most difficult - that’s when my mind is very overactive. Make sort you take a nap when you need to.
Sending lots of love and await to hear your next adventure!
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That sounds a phenomenal weekend @summer123 I am exhausted just reading your post.
I am not surprised that you are both resting.
I think it is so natural to cope during the day and our minds are too active to sleep at night or we are afraid to sleep at night.
The darkest hour is just before dawn.
The trouble is that we need our sleep to recharge our batteries and keep us functioning properly.
As a spouse and carer it is so important that you look after yourself otherwise you perhaps will find it so, so difficult to look after your husband.
Please keep updating us and be so, so kind to yourselves
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I am so sorry to hear your news. Love to you and your husband and family. Xxxx
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Well we are now at week 4 of a 4-6 week prognosis, I know I should be and I tell people I am taking one day at a time but its so hard. I feel a sword is hanging over us waiting to drop.
Saying that my husband is still doing OK.At last weeks hospital appointment Consultant says his blood counts all excellent and better than average, he is still not showing any more signs of the brain cancer and has no side effects to the drugs he is taking apart from a massive appetite,
He was really happy to go to our 2 year old granddaughters birthday party last Saturday and yesterday a group of his old workmates took him out for what turned out to be a boozy lunch. We are the busiest we have been for over 2 years, we have a holiday to Cromer booked for the first week in July which we have to pay for next week and he is adamant he will be going.
I am doing OK, still very tired as not sleeping well. I have put on loads of weight due to eating out so much and always making us special meals and treats I know he enjoys.
Just got to see what the next few weeks bring.
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It’s so lovely to hear from you.
Everyday must be so hard and off course it’s hard not to think about the timeframe you were given. I’m sure we would all do the same. However, I am in awe of you for doing so many lovely things and making so many memories because I know how bittersweet it must be.
I’m glad symptoms aren’t still holding off.
We all understand what it is like waiting for things to turn and we are here to support whenever you need us.
Sleeping will be difficult. Just take care of yourself in other ways. How are the children?
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Oh @summer123 you describe it so well as a sword hanging over you.
Yes, taking it one day at a time sounds simple, but actually is so, so hard.
You must be so, so tired and my mind definitely really whirrs at night and the darkest hour is just before dawn.
A spouse/carer is the hardest role in the world, the unsung heroes that get forgotten.
Please let us know what happens about Cromer a brilliant place for all seafood, the lifeboat station and Pavilion Theatre.
Be kind to yourselves
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Hi @summer123 i know when i was first diagnosed i didnt sleep and after a few weeks felt i was losing my mind. My partner went to the pharmacy and explained the situation and she recommended something called sleep aid. What a help i found that. I had a full night sleep and felt more able to cope with things the next day. I dont use ot all the time but every now and then i need to sleep. They are not prescription drug so maybe worth a try and talk to pharmacist. Im so pleased your husband has no symptoms and Cromer sounds amazing especially if the weather is good. Take care and be kind to yourself.
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Thank you again for being so kind. The children are being brilliant so supportive, I worry about my daughter she is doing and organising so much for us aswell as having a job and a 2 year old, but her husband is very supportive. If we make it Cromer will be lovely, its where we took the children when they were little for many years.
Thank you @Mandi713 I will think about getting Sleep Aid but its hard as I want to make sure I am awake if husband needs me.
This weekend we have decided to spend a night at a hotel in our city, we are going to be tourists in our home town and see things we haven’t seen or not for many years.
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I’m sorry @summer123 . I have been in the situation where I was with someone in the last weeks of their life and I know how difficult it can be for everyone concerned. Every morning you wake up wondering whether this is it and not knowing how you will cope when it happens. I hope that you are able to find some comfort somewhere and feel able to talk to us and others should you need to.
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Hi Summer, I understand the ‘sword hanging over you’…I think anticipatory grief is horrendous having been through this twice myself. I ended up going to a counsellor as I just needed to be able to have an honest vent!! Staying in the moment was the best advice given to me but is oh so hard to put into practise. It sounds like you are both making the most out of every day and I do love your husbands attitude that he will be going to Cromer. I dont like mentioning or comparing other peoples illness but my sister in law had metastatic brain cancer and was told a few months. She ended up living two years and I’m sure her ‘can do’ attitude was a major factor ( or her stubborness as she called it)…I only mention this in case it helps not to focus on the number of days/weeks that have passed. So difficult Summer123. Just wanted to let you know I’ve been thinking about you both. xx
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Sending love and hugs for you and your husband Summer123.
Thinking of you.
Debbie
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Hello @summer123 I been thinking about you both loads and just wondered what is going on your end xx
Likewise Summer123 I have been wondering how recent days have been - many of us thinking of you
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Thank you everyone for thinking of us. We are now at week 6 of the 4-6 week prognosis, I hate counting but its very hard not to. We saw his consultant last Friday who is extremely pleased with him, he still has no symptoms of the brain metastasis, only a little weakness in his legs which he thinks is caused by the high dose steroids he is on so they have reduced the dose. But I have to ring the hospital if he has any of a list of symptoms and they will increase the dose again. The consultant thinks he is a model of someone living life to the full, and the first thing he says is well what have you been up to. A week ago we had a city break in our own city we stayed in a lovely hotel, had cocktails on the roof terrace, saw a show. Also went to a Transport Museum, Art Gallery and a walk around our Cathedral. Tiring but enjoyable. Last weekend we went to a 30th birthday party on Friday and a 70th on Saturday. This weekend we have lots of Jubilee events to go to. Cromer is paid for and still on the cards to go to so fingers crossed.I feel bad about our son who weeks ago cancelled a holiday he was supposed to be going on next week but of course he is OK about it.
I am OK, I have an eye problem which I think is caused by stress. I went to see my GP this morning about my eyes and lack of sleep and I couldn’t stop crying, she is very good and is referring me to the mental health specialist on the team.
Its still very hard but so glad he is still with me and so grateful we can enjoy our time.
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