The Unknown Pathway Ahead with Glioblastoma Stage 4

[Ange62]

He had a CT scans followed by an MRI. We were called in to meet and discuss the results with the Neurologist who was honest and direct about what we were going to be dealing with and a path forward in suggested treatments. Radiation and Chemotherapy for 6 weeks in conjunction with each other. 
We were advised of all the side effects from both treatments and had weekly meetings with the oncologist. 
But as much as you read and ask questions no one can tell you how this will manifest in each individual. 
My husband was lucky not to have too many side effects for the first 4 weeks apart from fatigue and some side effects from the Steroids he was on to help reduce swelling from the biopsy surgery. The mood swings from the steroids was something I wasn’t prepared for as he become aggressive and very snappy. Someone  I didn’t  know. This is frightening. 
As the treatment went on my husbands blood was affected.  His platelets and white cells were unable to reproduce mostly from the radiation treatment. This made him extremely weak and tired and susceptible to infections. He came down with a urinary/kidney infection and needed transfusion to help him fight and a stint in hospital on IV Antibiotics. 
This has happened twice now  with 2 hospital stays from being very sick. 
We are now 3 1/2 months into this and it’s a roller coaster ride every day. You cannot make any plans and need to be prepared at becoming isolated from family and friends as normal life doesn’t exist anymore. 
Our once happy life with fun and laughter is gone with no sign of returning in the near future. It’s been so hard. 
Sorry for going on and I’m only just giving a small snippet of our life now.

My biggest question is how will it manifest as time goes on and what can we really expect.  The details are so vague of what might happen it is hard to know how we will be able to cope with it all as a person dying and a person caring and grieving with the loss of the one you love with examples of what to prepare yourself for.  
If someone has insight please share your  experiences with cold hard facts. We are about to find out if the first round  treatments have had any effect on his tumour so it is a very difficult time. And then find out if the second round of treatment is worth having or not. 

Thanks for reading my blog and if you can give me any insight as to what lies ahead please do. Don’t sugar coat it. 

[Niece13]

Thank you Ange62 for your raw and honest post. This is exactly the same situation our family is in. My father was diagnosed with Stage 4 Glioblastoma in early March and has recently finished 6 weeks of chemotherapy and radiation. He too became a different person with mood swings that saw him snappy and aggressive which were very out of character. I can see my mum struggling and would also like to hear from others of what the next steps look like so I can be there to support my parents.

[Ange62]

Hi Niece3

Sorry to hear you and your family are on the same pathway of illness. 
We will hear tomorrow the results of the past couple of months of treatment. Fingers crossed for a positive result although we are realistically prepared for whatever comes. 

I went to counselling today which was challenging but beneficial. I recommend the cancer councils service available to patients and carers and their families as a free service so if its available to you where ever you live don't  be shy.  I have used counselling before as a great tool to help get me through some really tough times.

We also see the palliative care team for the first time tomorrow. I still have no answers as to what lays ahead but today my councillor helped reaffirm that I need to stay in the moment and not reach too far ahead on things that will be different for all people and carers dealing with this illness.  We wont know until we get there and the mind makes things overwhelming by thinking of the worse that might not happen. 
Again the unknown frightening but I have a strategy to help me cope. 
I have been saying to myself take it moment by moment but in reality my fears were taking me too far ahead of myself. I have enough strength in me to deal with what comes. 
I hope this makes sense lol. 

[Kellza72]

Hello. One thing I learnt when my partner was told he was terminal was to not think about the day, your loved one wont be around. If you do, then you miss out on the time you could have had  to spend with each other making memories, Take lots of photos and talk and talk and talk. This little lesson woke me up and thats exactly what my partner and I did before he passed. Built those memories, even when he was in hospice and not conscious. Family and friends wrote messages on the nurses board in his room and I took photos of the board every day and read out loud to my partner of what they had written. I sang him songs from youtube on the tv in his room as well. I did all I could to take away good things. Even though some days I feel like I didnt do enough. I wish you all the best of luck 🙂

[Ange62]

Hi Kellza72

Thank you for taking the time to respond to my blog. You are right, as time progresses you think less and less of the end time but just of living each moment for what it brings and trying to make the most of each other and times spent with family and friends. 
Each day still requires flexibility with no promises it will turn out as we plan and desire but we are still together and we’re thankful for everyday we have together. 

Kind Regards

Ange62

[Ange62]

Hi Niece13

just checking in to see how you are travelling and hoping your mum is coping with this journey as best she can. 

Kind Regards 

Ange62