Experiences with

Carer support

Join our mailing list here: Parent and Carer Support Network Events | Asthma + Lung UK (asthmaandlung.org.uk) https://www.asthmaandlung.org.uk/groups-support/parent-carer-support-network/parent-carer-network-events Parents and Carers – Join our free online ‘Winter Wellness’ session Managing asthma

Asthma + Lung UK Parent Carer Support Network Who are we? Do you have children or grandchildren who are 0-17 and living with asthma? The Asthma + Lung UK Parent Carer Support Network is a group for you.

Join our mailing list and sign up to our next event here: https://www.asthmaandlung.org.uk/groups-support/parent-carer-support-network/parent-carer-network-events Wednesday 24th July @ 7pm: ‘Sweet Dreams’ Helping your child to sleep better with asthma If your child’s asthma keeps them

To pump myself for the power walk race, I listened to “Go the Distance” sung by Dan Vasc about a dozen times on the way to the hospital. Four hours later after my appointments, my young doctor of 35 years young (me being double her age) and I power walked the 1500 foot skybridge. Some of the Lyrics

Has anyone got any experience of managing fatigue during palliative care? My mum is struggling so much with fatigue and we are getting conflicting advice. She is on a blood thinner (Apixaban) after a blood clot which has now cleared. Her oncologist wants her to have a steroid (Dexamethasone) and has

On Abby and Lupron for two years. For years before APC, WBC measurements were fairly low at 4K/microliter. Normal monthly trends were averaging around 3.5 to 4 with a spike toward nirvana during hospital stays. Yesterday’s measurements were an extremely discouraging 2.5k per microliter. So the plan

I am having last of 6 Pluvicto treatments tomorrow. I could not wait to have blood work so had it done today on the way to SF. last PSA was 560.6 about 3 weeks ago and today is 1221.88 using the exact dates the doubling time in months is .76 months. I know there can be a PSA spike with various treatments

Hi all My Dad was diagnosed with GMB stage 4 in his frontal lobe in mid September this year. It has been a scary, stressful, traumatic rollercoaster since then. Dad is currently on palliative care at home. Radiotherapy would only acerbate his symptoms. My Dad is an otherwise fit, healthy, positive and

Hi all, Not sure whether I have been here or not. Had upper right lobectomy Aug 5. They thought it was just in the lung and i'd be 'cured'. It was also in the lymph nodes so now scheduled for my second of 4 rounds of alimta and pemetrexate nov 5. I am all alone and nobody will help me. Have called social

Hello all, Before I get into my post, I’d want to note it contains content about my mums end of life care. I do not want to worry or upset anyone so my post is more for those who are either end of life themselves, or have supported a loved one at this stage. If you are a family member, I kindly ask

Hi - me again - Just so confused and looking for something positive to cling to. We’ve had a call from the hospital that my brother is being referred for palliative care ? Does this mean the end for him ? He’s been on maintenance Nintendanub for 4/5 months and seemed to be doing well - I could speak

Lupus is pretty quiet at the moment (yay!) but always means one of the other issues is being a bugger. Currently, my APS is being an absolute devient, can't seem to stay within my therapeutic range at the moment and having lots of internal bleeds. Had to have it reset with vitamin K a few months ago

My husband is in palliative care for liver disease being cared for at home. He has Ascites and has been having approximately 10 L of fluid drained every 3 to 4 weeks in hospital. The procedure involves an IR scan, because he has varies, placing in the drain and being in the medical day unit for six

My dad was diagnosed with Stage 4 Prostate Cancer 2 1/2 years ago. They first started him on Prednisone With Abiraterone and then that failed months in. The doctor then prescribed Xtandi and that also failed. He then tried a clinical trial drug (I don't know the name of that) along with chemotherapy

Hi. I have just been prescribed Butrans (Buprenorphine) weekly skin patches. These are for pain control as I have terminal cancer and getting constant pain. I also suffer from refractory PLMD and am on a high dose of Neupro patch(6mg). I am hoping that the Buprenorphine will mean that I don’t get any

Told no treatment, no Liver transplant, blocked bile ducts not resolved after two ERCPs. Left Right intrahepatic ducts. Left to palliative care, no surgery or bypass offered does this sound right to anyone ? Does anyone know of an ERCP specialist? Were South East England

Morning everyone, I haven't posted in a few weeks, but want to say how comforting I find it to read posts and the very knowledgeable replies (I'm thinking of you Katy! ) I spoke to one of the liver nurses a couple weeks ago and she was a total saint and gave me so many practical tips. It's my husband

I’m coming off the mountain top! What an incredible experience and I’m sure Nurse Sarah (not her real name) feels the same! I was smiling and laughing all the way home from my hospital! So much fun! I can only say in my life that my wife’s birth to our daughters surpasses this. The only thing that

Hi everyone...God bless you all in this fight. I have only posted once before, I think. But, sure do keep up with all on this board...so helpful!I have triple pos MBC with Pik3ca mutation. Diagnosed about 2 1/2 years ago. Not much luck with treatments...am on my 4th or 5th line...have lost count. My

Dear Forum Members, I am reaching out for guidance and support regarding my father’s ongoing battle with advanced prostate cancer. About a year ago, he was diagnosed with stage 4 prostate cancer with extensive bone metastases but no organ involvement. Recently, we discovered that he has a BRCA2 mutation