Hello Peanutz,
In March we had the MRI which show the small spot growing on the left temporal lobe was indeed a tumor (having tripled in size since the Jan MRI).
The surgeons indicated that surgery was not an option, but we could do radiation. The specialist indicated that Pieter could lose abilities in area of communication. Within weeks Pieter lost the ability to read, write and verbally communicate. We were informed to put up the Dex (which was working, as we could see the improvements), but eventually the improvements stabilized then we noticed a decline (thinking it was the tumor).
I watched Pieter slowly lose the ability to sit, stand and walk, called an ambulance to assist us to get to appointments. Once at the hospital (1st May), Pieter was placed in palliative care and we were giving three days. The doctors were only going to give Dex and morphine, all other meds removed. Then Pieter started to respond, it was found that there was an error in the meds and accidentally Pieter had no Dex for a few days (Dex was mixed up), which allowed for the swelling and tumor to have fun.
Once Pieter was out of danger, we were transferred to local hospital for a week before being allowed to go home.
At home Pieter had the ability to use the commode, and sit up, watch tv and occasionally chatted (not always making sense). Then Pieter started to decline, difficulty in standing up, then difficulty in sitting up, followed by difficulty in rolling/moving in bed (so every four hours I would move Pieter). This was then followed by difficulty in swallowing foods (meds were crushed and placed in thicken fluids), in the end even puréed fruit was to thick and had to be thinned down so Pieter could swallow.
Pieter' breathing over the past two weeks had become erratic (normal, deep, shallow, mix of all three). On the night of the 5th, Pieter was going between shallow breathing and deep breathing, but just before 5am on the 6th June I woke (not that I got much sleep, listening to the breathing) due to a change in the breathing. Pieter was awake, have turned on his back so he could breath, so I got my youngest daughter up and we made Pieter comfortable (with the use of hospital bed we obtained through DVA) by placing him in a sitting position, which allowed the lungs more room to expand.
My daughter and I sat with Pieter, talking to him, giving him cuddles, telling him it is okay.
There was no pain, fear or panic in his eyes, his took his last breath at 6am.
Pieter is finally at peace, the tumor can now do no more damage.
For me:- I have been trying to keep myself busy (helps dull the pain and loss), when it is quiet then more often than not the tears flow. The tears come and go through out the day and night. Sleep is not easy to come by, the emptiness in both my heart and the house is felt keenly.
I talk to him every day and have continued to write in the diary I started last year about our journey.
Tidying up the kitchen (putting away all the meds and equipment), washing the bedding, all reminders.
The funeral is on Wednesday 13th June. All the things that have to be done is amazing.
For me personally, I have thought about what I will do, it changes a lot, I will have a short time where I can reflect over what my future holds, then I will have to find work and get back on the wheel of life (not sure whether I can do it in one go, or whether it will take many goes, to get back into the swing). My middle daughter is getting married in July (a point to aim for at this point in time).
It is a huge head spinner, heart wrencher, life changing experience.
I miss touching him, kissing him and listening to his voice. I know the pain will slowly go away but for now........
Thank you for your support.
