Hi. My first post on here. My dad was diagnosed with a grade 4 fast growing glioma in May. He had brain surgery at the beginning of June and had Chemo (tablets) and radiotherapy.
He seemed to sail through that but then it’s all gone rapidly downhill. At the end of July/beginning of August he started with breathlessness and was in hospital for a month. He had blood clots on his lungs and pneumonia. He was kept in hospital because his neutrophils were too low. He was injecting blood thinners but also getting injections for his white blood cells. At the end of August they let him home as his cells were ok. Then he started bleeding from the injection site so ended up in casualty. We’ve had no support at all from his doctors and don’t know who to turn to. I contacted his doctor as we are getting no help. Doc sent district nurse to check neutrophils and then rang me as they were high asking me if I think he has an infection!!! Sent a prescription of antibiotics and that’s it. He has a carer coming in once a day to get him up and wash him. Over the last week he has become increasingly sleepy and doesn’t want to get up. But his follow up appointment is not til 18th October so until then we have no idea what’s going on. My dad was given 6-12 months - I don’t really know what to expect but I feel he is deteriorating quickly. I’m not sure they’ll offer him another round but after this last month I actually think he will refuse.
just to add I’m not caring for my dad full time. My mum is caring for him. I am working full time but go everyday to give him is thinners injection and visit him, take my mum anywhere she needs to go. I live 2 doors away so I am near to nip round and currently working from home but go to office 2 days a week to take my daughter in. I don’t have any brothers or sisters or close family just my mum that’s with him 24/7.
sorry for the long post but I think this is just everything spilling out especially after reading the other posts xx
Hi ellelledee, welcome to the online community and I am so sorry to hear about your dad. You guys have certainly been on a rollercoaster ride here. One that I can relate to up to a point,
My husband was diagnosed with a GBM4 just over a year ago, had surgery and the 6 weeks of chemo/radiotherapy. He developed blood clots in his lungs post surgery so we too had to deal with the blood thinning injections. It's a whirlwind and so much to try to get your head round in such a short space of time.
I'm no expert but if you or your mum are concerned about how tired he is and about his treatment I'd reach out to his medical team and CNS rather than your GP. Hopefully they will be able to offer some guidance. I understand that 18 October feels like a lifetime away just now too but at least he has an appointment coming up so soon.
Macmillan Support Services also offer lots of information, support, financial guidance or just someone to listen. It’s free to call 0808 808 0000. Most services are available 8am to 8pm, 7 days a week. Have a look by Clicking here to see what is available and we also have our Ask an Expert section, but do allow two to three working days for replies from our expert team.
Like you, I'm an only child so I understand the weight of this feels like its resting on you as you try to juggle everything. Please take care of yourself too here. Taking "me time" isn't selfish. It's essential to help you stay strong to be there for your mum and your dad.
Stay strong. Breathe.
love n hugs
Wee me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
HI Ellelledee
I hope today is a brighter day for you all.
I can empathise with your frustration with the GP and NHS red tape. I've been tangled up in it myself several times and even been told "I can't give you advice as your husband isn't currently receiving cancer treatment." It gets beyond frustrating!
I hope you and your family get the support you need from the hospice or via MacMillan.
Hang in there. You're doing great here.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
