We feel so let down by our cancer care team. Husband had his first Chemo session last Monday, to try and shrink the tumour, prepared to give it a go, so he could possibly start eating again. Had the Chemo, 6 hours later walking in the corridor to reception on his own, with bags of medication, so confused didn't know what he was meant to do. I took the bag and went to find the nurse, to explain, she went through it very quickly. I had envisaged that after the treatment, someone would sit down with the both of us and go through it all. Just felt so alone.
Took some sorting out, and because most of his medication is liquid, we were told to crush the chemo tablets that he had to take twice a day, and draw up in a syringe. The problem was they are plastic coated and took ages to break down, then concerned he was not receiving it all.
Tuesday, contacted a friend who is a nurse, who helped explain the procedures, she even struggled with the tablets, was also horrified at how small a bottle of morphine we had, that we were having problems obtaining from our surgery.
The up shot is we contacted the Gastro team, about the problems and they put in a referal to the Community Palliative Care Nurses, which we are now under. We felt, great some support, how wrong could we be.
The advice line, at the hospice oncology, no one answers, or it rings out. Eventually after leaving messages someone did make contact. We have been allocated Helen. Meanwhile Steve has been really struggling, constipation, them diarrhoea, sickness, not eating. losing weight, struggling to do our best on our own, feel so very let down.
Yesterday a week after Chemo, I managed to ask that Helen contact us as we needed some more antisickness meds. She was concerned that Steve sounded as if he was struggling, also suffers from severe COPD, and concerned he was dehydrated, told to stop taking Chemo tablets and we need you to go to the hospital, to be rehydrated and will be admitted for a couple of days, can you get there? Do you need an ambulance? The hospital will be expecting you. Said we would drive, took him there the hospital knew nothing about us coming.
Produced the sepsis card, they gave him antibiotics and saline, they did keep us in a separate room, then we came home. Feel so very let down by the team.
Today will be about contacting Helen again about medication and lack of care and support. We are both totally drained, we know there is no cure, but we had hoped for better treatment than what we have so far not received a week into treatment.
Has anyone else felt this way?
Hi
Your experience so far sounds awful, sorry it has been this way for your husband and yourself, the differences around the UK seem fast and it just shouldn’t be. You shouldn’t have to be shouting for help and support.
My advise.
1. Is there a MacMillan centre near you? Sometimes there may be one attached to the hospital.
2. PALS. Email your journey so far, bullet point the failings. They have to act on your complaint and inform the departments.
Take care
Best wishes Jennie 
