Sorry for not updating straight away, life seems to take over from time to time. I have a little one starting Kindy this week too so have been busy getting everything ready for her.
Mum had her MRI on the 11th January and her follow up on the 18th January. Good news, no new growth. Her treatment for now will be NO radiotherapy and double dose (250mg, started on 140mg) of Temozolomide, 5 days consecutive and 3 weeks break in between each round. She started back on Temozolomide today... already suffering quite badly with it, unfortunately. We have to take her for a blood test on Monday (Day 5) to see what her body is doing with it and see her oncologist again in 3 weeks from now.
Otherwise I'd say she is stable, most things she is experiencing have remained the same for around 1 month or so now...
I hope you are all doing ok, that you enjoyed your Christmas and New Years as best you could.
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How is everyone doing? What's going on for yourself or your loved one?
Mum had her first progress MRI on Friday last week, review with Oncologist is on Friday this week, we should find out details of the MRI while we are there.
At the moment we (as a family) are finding it hard to cope with the following:
No short term memory
No logical thinking
Laying blame for things she has done on my children (her grandkids) rather than admitting she broke or damaged something.
Not being truthful about how she is feeling or changes in her health and well being
Change in attitude
Outward spoken when in previous times, bit her tongue
I know all of the above are part and parcel with GBM and brain surgery in general but when it's actually happening to someone so close to you, someone who has previously NEVER been like that her entire life, it's heartbreaking.
As for Mum's health in general, she is fairly stable. Her legs get spasms all the time in the night and she now wears a special boot on both legs to combat the spasms. She seems to have some mild incontinence but hasn't spoken up about this so I can arrange her the things she needs, I'm too scared to ask her about it as I know it is embarrassing for her to admit. My Aunty is a nurse, she is keeping a close eye on things for me as I update her and will have a chat to Mum when the time comes. Sleep is still a big issue, I think her lack of logical thinking comes into play here. If my children are awake for any reason in the night and wake Mum, logically she won't stay in bed and allow herself to go back to sleep, instead she gets up and spends the next couple of hours awake trying to keep busy around the house. Therefore, exhaustion is another big thing for her too. She won't sit still for more than 20 minutes or so, even eating a meal she is on the go, coming back and forth to it for a bite here and there.
First round of chemotherapy and radiotherapy finished in the 2nd week of December, 4 weeks break is almost over. I expect that the oncologist on Friday will let her know when it all starts over again.
Sorry for not checking in more often, hours blur to days, days blur to weeks and well life is pretty hectic between caring for my children as a single mother as well as trying to assist Dad in caring for Mum...
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How is everyone doing, it's been a while since I've popped on.. life in general (aside from Mum) has been pretty hectic with lots of end of year things happening for my children.
Mum is doing ok at the moment, well ok in the world of Chemotherapy and Radiotherapy that is. She has had minimal side effects, a bit of tiredness and hair loss at in the areas where the Radiotherapy is targeting. In general she seems cheery enough, although at times I doubt she is being honest with us and is just putting on a super brave face.
She has had some issues with Temozolamide 140mg dose. It was causing her to feel like electric shocks all over, like she was constantly buzzing. Her Oncologist pulled her off it for a period of 4 days to see if it stopped, it did. He put her back on to it again at a dose of 100mg to see if the dosage was too high, unfortunately buzzing again. She is almost finished her first 6 week cycle of both treatments, will get time off over Christmas and New Year. Review with the Oncologist on 14th December will reveal their continuing plan for her care. There is talk of doubling the Chemotherapy dose for next cycle, why would they do this if she gets the bad (allergic almost) type side effects from it at 140mg...?
Another question I have, coughing up blood? Is this a normal side effect of treatment? or, should I be more concerned. Mum is going to tell them today at her radiotherapy session, I can't help feeling this is the start of a downward slide :(
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I'm so sorry to be reading this Tatsoi, I really do hope that it isn't the worst...
Does he have any more rounds of treatment to complete?
How is your Dad doing in general?
Hang in there, keep yourself focused on your visit and being able to spend precious time with him.
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Thanks Rarsie for your reply...
I sat and blogged last night, caught up on the bits that seemed most important, left out the days where we just plod along and do what we do each day... Mum isn't doing too bad at the moment, weakness in both sides, still walking ok, managing most basic household chores and cooking occasionally. Right now she is singing the theme tune to Sesame Street, over and over. She gets stuck on a tune and it sticks there ALL day some days.
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Mum isn't doing too badly considering everything that she is going through right now. She suffers badly with weakness to both left and right sides of her body, she does what she can manage and then takes a break for a while before she gets back to it again. She struggles to sit still for too long most of the time anyway, even before diagnosis. Her sleeping pattern has shifted dramatically, I think this is due to the Dexamethasone. Around midday each day she wants to just go to bed and sleep, I've pretty much begged her to give into that feeling and do just that, go to bed and sleep... nope, she plods on and fights it. Radiotherapy is every afternoon, she has a volunteer driver for the Cancer Carers come and pick her up around 2.30-3pm Monday to Friday. She has no choice but to slow down then as she is in the car, then waiting at the hospital for her appointment.
Yesterday, losing her hair was a down day, she said when it happened, she just wanted to cry and cry. Had they have told her they put the radiation dose up and to expect it, it wouldn't have been so bad.
I've started blogging, I will blog the bigger things, the in between days when we are just travelling along the same I won't blog.
I hope your journey with GBM is going ok...
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Mum heads to see the Neurosurgeon with my Dad and my younger sister...
She is in good spirits, has been since she arrived home from hospital. I wonder if she would come home in such good spirits, time would tell.
I was very anxious the entire time they were gone. I kept busy around the house and with the kids. I think all along I was planning for bad news this day... anything better than bad was a bonus.
My bonus never came, Mum was diagnosed with a very aggressive tumor, grade 4, Glioblastoma Multiforme of the Brain. She is to start Chemotherapy (oral tablets at home) and radiotherapy at the hospital.
All I keep thinking is, why us? Why MY Mum? Why not someone elses... then again, I wouldn't dream of wishing this upon anyone else. Life isn't fair, what did we do wrong? Of course, we did nothing wrong, neither did Mum... life deals us all different cards, we are all made up of different cells, good and bad and of course, we got the bad 😞
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Today Mum was discharged from hospital... just 1 day shy of a week post surgery. With details in hand about her medication and a calender full of rehab appointments she enjoys being home with us again.
Now we wait for the biopsy results. Mum has a follow up appointment booked for the Friday 5th October to receive these results...
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Today Dad heads into the hospital with my sister. Mum is grogy, sleepy as expected and I am advised to hold off on coming in for a while. I wait and head in for afternoon visiting hours instead. I arrive to find Mum sleeping, I go for a coffee instead to allow her that bit of extra time. When I get back she was still eyes closed, I pull up a chair and it disturbs her, she wasn't asleep at all, just had her eyes closed...
I am in awe of how Mum is doing, she explains to me that she has been up for a walk with the physiotherapist and that although she is a bit wobbly, she did well. It's not even 24 hours since her surgery and she is already up and having a walk, amazing!
Dinner arrives and Mum is ravenous. She eats every single morsel on her tray, right down to the horrible soup that hospitals seem to think might be appealing. Mum is feeding herself, drinking from a cup... nothing amiss at all. Phenomenal!
The coming days progress is excellent, more walking around, aided to start with then with a frame, then with just a walking stick...
Mum moves back to the normal part of the ward on the Monday afternoon, settles back in to her old bed and continues to make great progress...
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My sister arrived yesterday (Thursday) from Melbourne. I am so glad she arrived in time to see Mum prior to her scheduled surgery...
I arrived to the hospital with just enough time to see Mum for a few minutes before she took her shower in preparation for her procedure. She was in good spirits as were we. We know how strong our Mum is, how much of a fighter she is and of course we had God on our side.
We waved Mum off, she was amazing! We will see you in a few hours Mum, we love you!
Hours passed, plenty of coffee was had. Lunch was eaten without much gusto, we all weren't overly hungry, it was evident we were all very worried about how Mum was doing. We hadn't heard anything from inside of theatre the entire time whey had Mum in there...
My older sister kept us entertained with her hilarious antics, many may have thought this inappropriate, we however, know this is her way of coping so went along with it too. We shared stories, played on the iPad (words with friends) against each other and waited, waited and waited some more.
My Aunty was with us the entire time, along with my Dad, and both my sisters. One of my sisters friends arrived to keep us company.. still no word.
My Uncle arrived, still no word... it was now gone 5pm! Mum had been in theatre for well over 5 hours now.
Finally.... the surgeon and his registrar walk out, smile at us and assure us that Mum is in recovery, doing well. He advised he would be back shortly with more information...
Good news at last! The were able to remove ALL of the tumor. It was attached by a very thin membrane to the brain. Mum was slowly waking up in recovery and we would be able to see her very soon.
Mum's surgery took 6.5 hours in total... a very long period in my life where it if were possible to hold my breath the entire time, I think I would have! The sigh of relief when we heard Mum had made it through the procedure and was waking up was immense.
The recovery nurse came out and allowed us to go in 2 at a time to see Mum... First off was Dad and my younger sister. Dad stayed in and us girls swapped places with each other until the recovery nurse said that was it.. no more visitors and we would be able to see Mum the next morning around on the High Dependency section of the normal ward...
It was now home time, I needed some down time from everything so got a bite to eat, sat at the beach and cried and cried and cried... I had waited for this moment the whole week... I had held my tears all week, now I couldn't stop them.
Today Mum became my Wonder Woman!
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Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.