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Struggling to cope - my husband is too young to be terminal

No. of entries: 6 | Posted on 1 May 2012 10:21 PM

Struggling to cope - my husband is too young to be terminal

  • Hi...this is my first time here or ever doing anything like this so even feel nervous writing this but am desperate for some kind of advice/help/support. I am 32,my wonderful husband has just turned 38 and we've been married for 5 years, together for 10 years. Though I know how lucky we are to have (and have had) such amazing times together it feels like things are so cruelly being snatched away. My husband has a grade 4 astrocytoma in his spinal cord, is currently undergoing avastin and chemo(irinotecan) treatment. It has been the worst possible cut a long story short 18 months ago we were told he had a benign (but large) tumour in his spinal cord and perhaps 10 years to enormous and devastating shock as he only had a dodgy foot...he had surgery but the tumour couldn't be removed, he then had radio, didn't work, followed by chemo, which also didn't worked...we were told in December that the tumour had become aggressive and he had 12 months at best. We are now 5 months on and in reaching May this has really hit me - I think I had been in denial as, absent the side effects of the treatment, he is fine apart from a bit of a limp and you'd never know anything was wrong to look at him. He is now finding things harder and harder to cope with and I don't know how to lift his or my spirits. Treatment is fortnightly and there seem to be more bad days than good in between - he is feeling like it is relentless now and is struggling to stay positive. I am struggling to cope with seeing him this way and trying to stay bright for him. We also both feel like we have been robbed of our future - I know this is premature and I am indescribably grateful he is still with us, but a major issue is that we have always wanted to start a family and were about to start trying when he was diagnosed and now it is no longer a possibility for us. He is finding it particularly hard as he will never be a dad and he feels he will leave no 'legacy' and i feel I am grieving for his feelings, the fact I will lose him an the fact I will never be a mum. Forgive me, I know I am waffling. Just finding it hard to watch my relatively young husband suffer so much when we thought we had so much future ahead of us. I think it's a bad day - hoping tomorrow I'll fee stronger again! If you have kept reading til now I both applaud and thank you! Any advice is very much appreciated. xxx
  • I so feel for you and what you are going through. I lost my husband when I was 33, he was just 40. It's so hard and I don't envy the time you have ahead of you. Im sure you will cherish every moment you have left, but I also know how very hard it is to stay strong and positive, especially when you feel you have been robbed of your future and all the plans you made together. I personally found I was grieving before I even lost my husband, how can you not when you have been told what you have been told? I'm sure you will have better days than today when you can still be strong and positive, but you're only human and you're allowed to have crap ones too! Sending you massive hugs. Xx
  • My heart goes out to you. I agree - you are far too young to have to face this. Cherish every second with your husband, though I know it must be dreadfully hard to try and keep a brave face. I'll be thinking about both of you on your sad and difficult journey. Lots of virtual hugs Heather
  • Hi Breda - thank you for your reply. Before plucking up the courage to write my first post I had trawled the site looking for people with similar experiences and I came across your blog. I confess I wasn't strong enough to read it after seeing the closeness in our ages when you went through this but I think it is something I will find helps me in the future. I had thought about contacting you but decided against as I didn't want to bring back any of the more difficult memories for you. I really appreciate you getting in touch though - one of the things I am finding hard is that fortunately there aren't many people going through this at our age - which obviously I am very glad about! - but it does make it difficult to find support from (and offer support to) people who truly understand this difficult journey. That said, I have amazing support from my mum, though I feel I rely on her too heavily with my emotional burdens, but I do find myself protecting the rest of our family and friends - I don't shield them from the facts of what is happening but I always hold myself together in front of them...It's as though if they see me not coping that will tip them over the edge and I don't want to do that. Anyway, I am feeling stronger again today - yesterday was definitely one of the crap ones! Thank you again for your reply and I hope you are keeping well. Big hugs, Lindsay x
  • Thank you, Heather, for your reply. You and Breda are both right that I must cherish every second with my husband - I do for the most part but as you say, sometimes it's a bit hard. We do try and make the most of his 'good' days and I have taken the rest of the year off work to look after him and try and build more fabulous memories when we can. Thank you for your kind words. I hope you and your husband are keeping well, Lindsay xxx
  • Hi, my name is Cat, I have added you as a friend, I an 28, my partner is 26, he was diagnosed with a low grade tumour last September when he was 25, the hospital were also wrong and in November last year after he became paralysed due to the wrong biopsy result we also got told it was a grade 4 Astrocytoma, I don't know if your like me and have been searching for info and others in the same position but if so you will find this is very rare to have on your spinal cord and there are not many out there with this type of tumour in the spinal cord. we have been on the worst journey and also feel so saddened about our future being robbed and I really can relate to what your saying, it's so very hard, if you'd like to talk please feel free to message me, as I have felt very lonely the last few months being in this position because of it's rarity and our age x