Hi guys,
Think I’m just looking for somewhere to air my situation.
Dad was diagnosed November 22 and it’s been a constant struggle with the care he’s received. Can’t be bothered going into it all but the entire things been a farce. He’s fallen through every single gap in the system and the only way anyone seems to sit up and take notice is when I become very angry at the situation and I really don’t have the energy to fight with every care professional that deals with him, promising lots of stuff (care at home, help with medication, scans, appointments, you name it) and then never follows up or follows through with the promises.
His radiotherapy and chemo ended mid to late January and he’s never really recovered, only leaving the house for hospital appointments every 3/4 weeks. His appetite started to tank after a grand mal in March and I told everyone at all the appointments that he was going some days without eating anything and his fluid intake was around a litre (sometimes less) because everything tastes horrific. And all anyone had to say was they would keep an eye on it (How? You see him once every 3/4 weeks and we are in the waiting area longer than we are in with a “specialist”).
As I predicted and had begged to prevent, dad ended up really sick from the dehydration and lack of food, that brings its own problems when it’s a brain tumour and his confusion got really bad I thought I was losing him. He was so bad he was throwing up dark brown bile. He was admitted to the hospital where they were disappointed to hear our situation and promised he wouldn’t be discharged without an OT and a care plan. Palliative care spoke with him when I was working and the doctor said not to worry they had been given my details to contact me.
Dad was discharged with no care plan, no occupational therapist assessment and no one from palliative care or OT has been in contact more than a week after he was admitted 
I also self referred myself for support in his home care, got a quick reply and a list of support available, received a call with the promise of an email to follow that day and a follow up call the next day. That was 2 weeks ago and nothing.
Im exhausted and I don’t want to be the person that’s always fighting with people, it’s not who I am. But I’m working full time to pay the bills while dads had to move in with me and NO ONE seems to give a shit for more than the 2 minutes I’m in their company. Telling me what I want to hear and never materialising with it.
Dads tumour has grown, he’s got daily headaches and I’m at the point that I recon he’ll actually be dead by the time they get round to us. Wish I’d taken out private health care years ago, and I never thought I’d be that person
oh Jamo13, my heart breaks for you both after reading this. I can empathise with how you are feeling.
I've been supporting my husband through his GBM journey since he was diagnosed in Sept 2020. Initially all the strict covid19 restrictions made liaising with the oncology team difficult. Over the past couple of years we've been through 10 separate hospitals and 4 separate oncologists with no consistency of care. We were passed onto the local palliative team at the end of February and I have to admit things have been more consistent since then for us. Have you tried talking to your dad's GP? Perhaps there is something he /she can do to put the appropriate care plan in place or put you in touch with the local MacMillan team for your area.
Battling with the system is exhausting and feels even more draining when you are still tackling all the emotions involved in supporting someone through the journey. Please make sure you take care of your wee self here too. This is a tough gig and I'm not too proud to admit after 33 months of it, I'm exhausted mentally, physically and emotionally. Please take time to recharge your batteries whenever you can. Like you I'm working full time and that too takes it toll.
This is a safe and supportive space so please reach out here anytime. There's always someone about to listen who gets it, someone to hold your hand and to offer that virtual hug when its needed. You're not alone. We've got you.
It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.
For what it's worth, my husband had private medical cover but after the initial discovery of a "mass" the private sector immediately referred him back into the NHS loop. Even if you had taken it there is no guarantees that things would have played out any smoother.
Sending you a huge virtual hug and lots of positive energy. Stay strong.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
So sorry to hear you're dealing with this. Like it's not enough to have someone you love going through having a brain tumour you really don't want to have to fight with "the system". I have to say my wife's CNS has been good and joining up dots when we've needed them like talking to the GP and chasing a physio to come out to her. Thankfully we haven't yet needed to engage with the palliative care team but it does like you've been really unlucky in the lack of support you've had.
No problem with just "airing the situation". There's little we can offer in terms of practical help but totally sympathise with what you're going through.
All the best
Chris
