The final weeks

Hello Justme

I have to say what a dreadful time it must have been for you, your husband and your family. I hope you were well supported throughout it all. Such a rapid decline like you say.

Thank you so much for posting this description/timeline  of what you had to go through.  I was diagnosed with a GBM oct12. I appreciate your frank description, as being prepared for what’s  likely to happen to me eventually is oddly helpful really. A lot of people like me I think fear the unknown mostly.

Thank you very much. 

best wishes

Simon

Dear justme 

Thank you so much for this detailed description of the end. Your story seems very similar to mine and it has helped me think of a timeline as the drs just will not tell me how long, so frustrating. 

My husband, diagnosed Sep 16, started to get really tired this September.  after 2 operations, chemotherapy, radiotherapy and immunotherapy he was looking so strong but then suddenly started to decline. His memory was just terrible. 

3 weeks ago I took him to palliative care in hospital as I couldn't look after him through the night. He would wake every hour looking for food or wanting a shower or even went for a walk. I am also in my last month of pregnancy. 

In the last 3 weeks every day Andy's symptoms have got worse. He can't feed himself and needs a catheter all the time. I am so grateful that he still recognises me and that he is not in pain. On Monday he will move to a care home 3km from our house but will he make the birth of our child...?

If you think we could be a good support for each other please sons hesitate to get in contact. Lorraineleivers@me.com

Hi Simon,

I am very sorry for your diagnoses. If I have one piece of advice it would be to live life to the full (and please write letters/record videos for your loved ones, do it now.. you can always do more later if you have the chance). We were able to get hubbys life insurance paid out and holiday and see sights along with paying off some debts etc so he didn't have to be worried about our future. 

Hubby was under the 'ignorance is bliss' thought. I (on the other hand) needed to know, I needed to know how long, I needed to know what might happen etc. Doctors I found were always (very) vague so I came here looking for real peoples' experiences. 

If you have any questions, please do not hesitate to ask. 

Again, very sorry for what you are going through 

Hi Lorraine,

So sorry for what you are going through. I have emailed you.

Tara

Dear LLeivers

  Reading your post makes me SO SAD. You must be young if you are expecting a child. I also have GMB4 but am 71 yrs now. It's a different situation. 

   I wish I had some 'special words' to make you feel better.  I just wanted you to know that my heart is very heavy for you. I hope your new baby will give you a measure of comfort.

  Am sending you whatever comfort mere words can bring.

   Regards, Taremay

Hello justme,

I am so sorry to read about your experience being a primary caregiver to your husband during his final days. Like him I was diagnosed with GBM4 MF during August 2017 and with treatment have approximately a year left to live.

I dread the thought of end-stage GBM & the devastating impact it will have on my wife of 32 years. Currently I’m engaged with my bucket list of things to do in order to make the transition of daily responsibilities as smooth as possible.

Again I thank you for sharing your thoughts and feel sorry for what you’re going though.

Thank you for your very open account of your husbands last days.  Up until recently I haven’t read these but with the development of my husbands 2nd tumour feel I need to know.  I agree with everyone else’s comments about the doctors being vague.  It can be really frustrating as they have obviously seen it all before so have a rough idea.  When we saw the reg before he started this round of radiotherapy the tone of the conservation seemed to say more than the words.

It is a comfort that it sounds like the very end is quick and I hope that this will be the case while dreading it with every fibre.

X

As I embark on the 5th week of radiation treatment I remain terrified by the prospect of recurrent GBM, which based on my race, age & pathology will likely occur.

So much for my "bucket list" of chores to do. 

Just thank you...so sad but thank you for thinking of others at this time.  My husband's operation was August 2016.  Apart from speech and language problems he is fine.  Doing loads of exercise and feels well.  It would be easy to get sucked in to all is well forever but I know it won't last...I hope you and your little one have the support you need for the days weeks and months ahead and it was so good of you to post this honest account. All my very best wishes xxx 

I had a productive day today. I made it to my 8:45 am radiation appointment followed by the delivery of trash/recycling containers because I can’t haul my refuse to the dump anymore.

This afternoon I had my septic tank pumped out. I hadn’t had that done in a decade. The gentleman could not have been more professional and was pleasant allowing me to jibber jabber along.

So that makes 2 to do chores I can remove from my bucket list of issues I can accomplish before GBM reoccurs and renders me incapable of doing anything productive.