All seems to be going downhill quickly - what should I expect?

Hello TB67 I have just come across your post and am so sorry to read of your daughter's journey - as a father of 4 I can fully understand your concerns and anxiety in the circumstances. I have a different cancer myself so am unable to answer any of your questions however by me replying to your post it will be "bumped" up to the top of the forum and will be seen by other forum members. I do hope this will prompt some further responses from Community members with help and advice.

May I suggest that for some extra help and support you contact our helpline on 0808 808 00 00 (8am - 8pm 7 days a week) where I am sure you will be able to obtain some excellent advice.

I do hope this helps and that things improve for you, your daughter and your family.

Best wishes - Brian.

Hello TB67

I am very sorry to hear of your daughter's diagnosis of glioblastoma. It must be incredibly hard for you all, especially as she is so young and a Mum of young children. I am so glad that you have had support from Macmillan and the Online community and that it has helped.

I hope you do not mind me responding as I had a different type of cancer to your daughter but hopefully by doing so, someone who has experienced similar will see it and be able to share with you their own journey.

I do understand that the uncertainty about what is happening is hard to bear. Has she got a CNS/palliative care team that you are able to talk to about what is happening and what to expect?

I am sorry that the chemo and the radiotherapy did not slow the growth of the cancer. Has she been seen over the last few days whilst being so unwell and in bed? My feeling is that whatever is going on that she needs to be seen to get the pain under control. Also to assess the lomustine to see whether it is the cause of some of the current issues or whether it is directly due to the cancer. I can understand the reluctance to go into hospital but it may be that they can initially assess things at home. 

Please consider giving the Support Line a call and talk to one of the nurses to get some advice. The number is below and they are lovely on there. 

I am sorry that you are going through this as a family. 

Jane

Hi so sorry to hear your story.  It really resonates with me.  My daughter (34) has metastatic Ewings sarcoma and has had 14 cycles of chemo and 20 sessions of radiotherapy.  She was diagnosed in March and has been so positive until recently.  She’s doing well, looks great but her mental health has nosedived, we have no idea what the future holds but she wasn’t expected to survive in March.   It’s so difficult to watch and I totally understand how you feel.  I’m struggling so much. - so difficult to stay upbeat in front of my daughter - whilst secretly collapsing inside .  I’m looking for a counsellor and trying to find her some help.  Do you have a Maggie’s centre nearby they are fantastic .  Sorry I can’t help but just wanted to let you know you’re not alone in your feelings.x

Hello April2021  Thanks for your post - I can fully understand your emotions with your daughter's diagnosis. Whilst I have a different cancer and can't comment on her treatment, may I make a couple of suggestions regarding counselling:

* BACP - This is the British Association for Counselling and Psychotherapy - it's an online directory of accredited counsellors - you may well find one near you. 01455 883300 or bacp@baco.org.uk or www.bacp.org.uk

* Our helpline 0808 808 00 00 (8am - 8pm 7 days a week) will be able to provide some help in your case - They are a great set of people, just give them a call and explain your circumstances.

I hope the above helps and just to let you know we as a Community are all with you here.

Best wishes - Brian.

 Millibob Thanks for your reply.  I rang the Macmillan support line yesterday & the lady, Helen, was very kind.  She emailed me some links & I’m currently wading through the BACP list of local counsellors!

Aw that's fantastic - I do hope you can get the help you want - it's hard especially at this time of the year.

Best wishes and good luck - stay strong - Brian 

Thank you April.

Somehow, knowing that you are going through a similar journey is profoundly helpful. I found reading your response to be emotional and cathartic.  Sending love to you, and gratitude.

x

Oh TB67, I can so understand what you're going through. My daughter is nearing the end of brutal chemo. Side effects have been more than unpleasant  she has had several spells in hospital. As I watch her so poorly, the feeling of despair and helplessness threatens to overwhelm me - but you can't let it, can you. You have to keep smiling, holding their hands and talking about what you will do 'when things are better' while all the time, your heart is breaking.

Daughter will have surgery hopefully in February or March, followed by radio and further chemo.

Sending you strength and a huge virtual hug. x

Hello Cherry.

Thank you for reaching out to me when times are so hard for you. It does not change anything, but it somehow feels better knowing that I am not alone and that you are going through a similar situation. My love to you and your daughter, and a big lingering hug for you.

I hope you find some moments of lucidity and positivity through the pain. That is what I love for at the moment and my daughter has increased her dose of steroids after a big scare just after Christmas when we nearly lost her. The short term effects of the steroids are promising and, although the inevitable outcome has not changed, it means that we get cuddles, love and good conversations - making more and more beautiful memories.

Thank you for your virtual hug. xxx

Thank you, TB67.  I'm sorry you had such a difficult time just after Christmas. My daughter has also had two hospital admissions since Christmas - chemo has affected her heart. She had her final pre-surgery chemo yesterday, we just hope her heart will recover without those brutal drugs every two weeks. Time to find out what the surgery plan is very soon, should happen within about 6 weeks if she is well enough.

It really does give you a lift to know that you are not alone, doesn't it? Very much love to you and your daughter. Keep making those special memories, they're so important. xxxx