My daughter had initial diagnosis 2 years ago and a secondary bone mets diagnosis in November last year. Nothing has been straightforward-treatment and side effects have caused constant problems.
The secondary diagnosis floored us all as a family but for me it feels like I lost my daughter at that point. Since then it feels like she has kept me(and other family members) at arm’s length- minimal phone/text contact, putting off visitors, increasing intolerance to people.
We have been conscious of her need for time and space, her autonomy and need for ‘normality’.
Treatment was put on hold due to oral problems and in March ‘suspicious activity’ in chest area was identified and a round of chemo was scheduled and eventually started at the end of May.
Fast forward to the last couple of weeks - severe headache and vomiting and a very reluctant hospital admission via a and e. Discharged without scan(to be arranged) and almost a week later still the same.
She doesn’t make a good patient(much better when she is in caring role) and hates being ‘fussed’. Today I observed actual anger/rage and this worries and scares me.
I just want to be there for her (and her partner).
Do ring the number on here and speak to a nurse they will be able to speak to you and offer you support in how you can be there for your daughter without her feeling like your supporting her if that makes sense they might also advise you of groups or things your daughter could get involved with too. Also do check out metupuk too, an older user from the forum Angela Oliver aka feelthefear was a beautiful wonderful incredible lady who helped set up metupuk and might be another avenue of support to you and your daughter Shi xx
Hi ya @itiswhatitis - can I ask how old your daughter is? I relate so much to this description that at one point I had to check if it was my mum.
For me, a lot of these behaviours can stem from the fact that I feel like withdrawing from my family and close ones as I feel emotionally and spiritually like I’m no longer “alive” if I’m honest. My nephew was born in the midst of my diagnosis and I genuinely couldn’t bring myself to hold him or be close (I was in the midst of scan feedback etc.) and felt that it would lessen his loss if he couldn’t “feel” me. When I sobbed to my breast nurse about this she told me it was quite a common behaviour.
I have, and can be angry too - and I’m consumed by guilt by seeing the impact on my parents (my dad now looks about 100 when he really didn’t before) & I think sometimes they feel it should be them. I’m angry I’m 38 and this happened, angry it’s ruined my year, job, relationships, plans. It’s all consuming.
Sadly, there’s a lot of jealousy in there too. (not a feeling I’ve experienced before).
My family try their best & mum and I do keep distance but she does text and send me things at times.
Thank you. I’ve just had a quick look at metupuk and can already see it may be useful.
Scans were finally done today and I am waiting on update. I will wait for that before contacting one of the nurses.
Thank you for responding. My daughter is 10 years older than you. Ironically, I can recognise what you are saying and I can see it in her. I can see her concern for me. I can feel her pain at everything that’s changed for her. She was already a ‘step’ gran to 5 when her daughter gave birth 6 months before her diagnosis and her grandaughter is everything to her and she’s almost resentful of grandaughter spending time with anyone else and I totally get that too.
Thank you for your kind words. X
You’re welcome @itiswhatitis1. It’s a strange combination of complex and simple at the same time if that makes any sense.
I genuinely don’t know who I am anymore & I guess that’s highlighted even more when I see people as it’s like a reflection of an old me that just doesn’t exist anymore.
People keep telling me it’s grief, it feels like an out of body experience to me.
I was diagnosed in May this year and awaiting surgery. My family and friends probably feel like I’m shutting them out. What I’m actually doing is creating my little bubble. The only place I feel safe is at home and with my husband and one friend. That is really tough for everyone else to get their head around, but I have feelings of guilt for putting everyone through this. I have fear for what’s next, I can’t be ‘ cancer girl’ for the next year.
She will need you, she does need you, but she just needs you in the way that she can handle at the moment. I think cancer is very hard on families and friends. This just shows what a great mum you are.
Stick with her. She’ll come back out of her bubble at some point.
Thank you.
Things have moved rapidly since Monday. Scans weren’t good news and my daughter had seizure last night and she’s been admitted to cancer unit.
The speed of progression has floored us as a family. This is so hard. Xx
Im so sorry to hear. I hope she is home now and recovering and so are you all. I am in a similar situation with with cancer, where its much easier not to tell many people. Sometimes the words sound to painful to keep mentioning and the less said the better.
A lot of the time, silence has been golden for me and really helped me in being my normal self. When people keep asking me if I’m okay, my problems re-emerge to the surface, so I have to keep dealing with them.
There are always thorns amongst the roses and in pain and affliction there is always a wisdom, I tell myself.
As long as you are there that is what matters the most. Its not important that you make it right, as long as you are around and she knows she can lean on you thats all that matters i think. Xx
Thank you.
I like this
‘There are always thorns amongst the roses and in pain and affliction there is always a wisdom’
24hrs and a cocktail of drugs and R was back in the room with us
She’s still in hospital but the plan is for her to come home with support from palliative care team. We are slowly getting our heads around it and at the end of the day there is no choice other than accept it and go with it.
I am so sad to read this. I have no useful or helpful words so I am sending you a tight warm embrace. I hope that she left you gently and was surrounded by love. Xx
they might also advise you of groups or things your daughter could get involved with too. Also do check out metupuk too, an older user from the forum Angela Oliver aka feelthefear 
