A terrifying journey

Less than one minute read time.

After four weeks of headaches, 5 GP visits, 3 NHS Direct calls, 1 out of hours Dr, an Eye Test and finally a visit to A&E ... my beautiful 22 year old daughter was rushed to Addenbrooks with a suspected brain tumor....  Within 6 days the operation took place to remove as much of this as possible.... this was the size of a satsuma in her frontal lobe... 

The operation was a success and only a small amount of tumor and microscopic tissue remains... diagnosis revealed that tumor was rare and a lower grade 4 (top of the bloody shop) ...

We start ... she (I must stop saying we but I feel as if this is almost happening to me also) starts 6 weeks of radio/chemo in 4 weeks and then 6 months of chemo ....

Problem I have ... I can't see anything positive ANYWHERE .... If anyone has a grain of good vibes, or positive vibes ... please let me know .... 

She is back to her normal self now ... but I know we have a seriously long road ahead that none of us were banking on ... how life changes so much ..... 

DylanFan
  • Former Member
    Former Member

    Dear Lou, I saw your post last night and have been thinking about you and your family ever since, and wondering what one can say to comfort you.  And one falls back on clichés, but clichés exist because they are true.  And what I want to say is where there's life there really is hope.  Your daughter is alive, enjoy every minute you spend with her, don't waste time on trivialities or negatives.  There is a management plan, no one has given up on her, there is every hope that she will pull through the treatment.  And yes, it's going to be tough going - radiotherapy to the head and neck is particularly hard.  So she will need all your support and all your love.  But rejoice in giving that love, live each day as it comes and try not to think too much about what the future holds.  None of us knows what's around the corner.  If I was a praying person, I would pray for you and your daughter, but instead I will hold you in my thoughts, and please come and vent here whenever you need to.  It may help your daughter at some point too, to visit the appropriate group for her - there is, I am sure, a brain tumour group on this website.

    With all my loving thoughts, Dyad

  • Former Member
    Former Member

    Thank you so much Dyad ... this made me smile today and the sun is shining.  I'm new to this site so will have a look around later.  Much love to you :)

  • Former Member
    Former Member
    Just on another note, I know that the web is full off doom and gloom for GBM sufferers, I have cried a thousand tears researching this beast. However, I am in contact with a guy from the states who is still here 10 years on. His tumour was inoperable, which is the same as my sis, and he has had the same chemo/rdtn combo and only had one re occurrence and is living a full and happy life, well as happy as you can with GBM.
  • Former Member
    Former Member

    update .... Half way though the Chemo/radio and after a bumpy start due to infection and stopping chemo for a few days and the odd bit of sickness... all is going well now...  She is flying through it and looking good.

    Hair is falling out this weekend which is heartbreaking for me to see but yet again she is taking it in her stride... she has the most amazing wig that looks so perfect and apart from having a bloated face etc from steroids she is feeling pretty good... I hope the bloating goes down as the steroids do as I know she will feel so much better then.

    The hospital have been really pleased with her and we are getting life pretty much back to normal... well as much as you can be... Her car is sold which is pretty crap and we are getting into a new way of living.... I am sooooo proud of her.

    We are really positive ... because positive thoughts means positive outcomes... that is all :) xxx

  • Former Member
    Former Member

    Well now 17th September ... hair is growing back ... weight is coming off and confidence is coming back .... sickness is being a bit of a beast though but hoping that's because the chemo is killing the crap that's left .....

    There are lots of ups and downs .... but it's looking good.... the MRi showed no regrowth and what was tumor is now holes..... holes is good :) ....

    keep smiling xxxx