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It's been awhile since I posted.  I wanted to post the outcome of my husband's last scan results and have often thought of the other forum members who post here.  There have been so many changes this year - many of which have been unwanted changes.  I guess I just needed a bit of time away from the forum to do the thinigs that needed to be done - but now I could use a bit of moral support.

He has aged so much since the start of all this.  Last month my husband had another seizure and now has increased anti seizure meds and upped the dexamethazone.  With regards to my husband's latest oncology appointment...  This is his 6th month of TMZ following the chemo/radiotherapy.  Unfortunately his scan results showed changes in the tumor and additional growth which means the TMZ is not keeping the cancer at bay.  Pending the results of a blood test he is due to receive Lomustine on a 6 weekly basis and another scan after 3 months.  The other option we were given was to not have any treatment and let nature take it's course.  My husband was keen to try the treatment and signed a new treatment plan to get things in motion.  He is worried about the side effects and only he can decide whether he definitely wants to go ahead with treatment or not.  It is a devistating blow for both of us because it is hard to be hopeful when the initial treatment hasn't been successful.  We have been having more conversations about the end and what happens after which tears me apart.  I don't want him to worry about me because I know in time I will be OK.  At the same time a part of me feels grateful that he is helping me face the fact that he is going to die - don't know when - but we know it will be sooner than I would have wanted for.  Will this be a last birthday or Christmas together?  I'm torn up - back to putting one foot in front of the other at the minute.  It is difficult watching someone you love frustrated, in pain and coping with the reality that is gbm4, which is alot of not knowing what to expect.  In the meantime, we still want to make plans to do things and try have something to look foward to.

  • I feel such empathy with you as I watch my beloved husband of 52 years slowly get weaker with this horrible disease. We have not had to make a choice about treatment as the tumour was too far advanced, even though it was only diagnosed in September. So for us we are very sure that this will be our last Christmas together. I thought things would be different and we would try and fill every day with things we wanted to do together but the reality is so different. My aim is to keep him as comfortable as possible while he is at home. Yesterday we managed to get outside, the first time in a fortnight due to constant bad weather. It was only for a twenty minute outing in his wheelchair but he loved it. We can’t get him in the car any more, too tricky to do the transfer so unless we get a special taxi we are confined to these short outings. At least we are together and for that we are so very grateful. His speech is getting more laboured and he cannot say everything he wants to say as he struggles to find the words but we still tell each other that we love each other and that means so much. I hope the continued treatment helps your husband. Take care.


  • Hi Shebelieves

    lovely to hear from you again but sorry to hear that things are progressing. One step at a time will get through this.

    Communication is so important during this journey and its great that you are still able to chat to each other about things. G refused to discuss is illness with me and only once asked me if I would be ok once he was no longer here. Like you say, I know I will be in time. I've shared our journey on my profile so won't repeat myself here.

    What I will share is the post I added to the GBM group the other day The Festive Season- a wee reminder that its only a day.... - Macmillan Online Community Hopefully that might help a little. 

    This is a safe and supportive space and you are not alone here. We're all here for you. We've got you so please reach out here anytime. Please also remember that the helpline is there too. 

    If there's anything I can help with, just ask.

    Sending you a huge virtual hug and lots of strength. 

    love n hugs

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • It was bad enough finding out there is tumor growth but living with the results is also hard.  On Friday my husband was sent to hospital with a very high temp. and UTI infection.  His legs would only just hold his weight and he was very wobbly.  In hospital he responded well to antibiotics.  He is now home and still taking antibiotics.  He is weaker than he was before the infection and has slept almost constantly.  He had a fall in the bathroom last night and grazed his arm pretty badly.  We couldn't lift him because his skin is too fragile.  We did eventually help him get into bed, though.  I hardly slept last night. I don't know whether to hope for improvement or if this is how it is now.  I hope my husband will be well enough to enjoy Christmas at home with our family.  Only time can tell. 

  • Oh Shebelieves, my heart goes out to you. This journey is beyond cruel but please try to trust that the antibiotics are still doing their job to treat the infection and that the other meds are keeping things at bay as best they can. Take it one day at a time but I do totally get that that isn't always easy.

    Christmas will be what Christmas will be for all of us but at the end of the day it's just a day...

    sending you love and light and positive energy and a festive hug. Stay strong.

    love n hugs

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • I’m on your same journey. Keep strong Muscle and if you need to ask anything please do. I’m on my second dose of lomustrine. MRI for me in January. I’m trying to blog my journey