Support or lack of.

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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?

  • yes we felt that way. Our case isn’t as complex as yours but we  definitely felt on our own.

    We felt we were given lots of support and communication prior to chemo but once we started the chemo it felt as though we were wading through treacle on our own.

    The only advice  we would give you is keep asking, if you’re struggling ask and keep asking. I always think the NHS care is brilliant but so often their communication skills let them down.

    It’s a very steep learning curve and you do learn quick.

    Sorry I can’t be more helpful but sending you both virtual hugs and hope things get a little easier, they did for us  x

  • What a distressing account of your experience. I hope that you get the support you need and deserve very soon. 
    I am due to start my treatment next week and your post has added to my anxiety. 

  • so sorry you have been left like this, i do realise each area where treatment is done  is different, not quite the same, not had my treatment yet, but when going through unexpected masectomy october last year, during the final treatment of the radiotherapy, told my oncologist back in March, this year time and time again i have no appetite, weight loss, not intentional, only when i had issues swallowing, contacted my gp who put in urgent referral for suspected oesophagus cancer, thank god he did, they found 2cm t2 tumour, those flipping words "so sorry  julie but we found it!, but so devasted that it wasnt looked into earlier, i was just told its after effects of radiotherapy, so currently waiting to see the oncologist next week, think food tube is imminent, devastated to have to go in, and to be on this journey not even a year after the breast cancer.  and i know i should be grateful to still be here to be treated, but my god this oesophagus cancer is so much worse than the masectomy, even the nurse called back yesterday and said its going to get worse than this!! and that i was too higher a risk for the operation, so its shed loads of chemo/radiotherapy,  thought i would have had that news from the oncologist,  good news is the radiotherapist team that treated me last time were compassionate, caring, friendly and there when i had a little moment when it all got a bit much. so will be back with those guys soon, keep reaching out biker babe, and keep us updated, its forums like this that give honest insights to all of the journey the good, the bad and worse.  thinking of you

    jules

  • also even one of our medical friends mentioned a little walk into the "PALS" room to voice our concerns would be beneficial, one in each hospital i believe, good luck and keep pushing

  • 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 SparklesSunflower

  • thanks for the heads up re pals jennie

  • So sorry we have caused you concern, we had our palliative nurse visit today, we understand more now, however it would still be nice to have the information sooner.

  • Thank you, the palliative nurse today has given us a leaflet to raise a complaint

  • Thank you, it has been a truly horrible week since the chemo, we have three contact telephone numbers, one to local hospice advice line, constantly rings out, oncology leave a message, cancer care line will send a message to the palliative care team. Fingers crossed after today's visit we will get some proper help. We also had an apology from the practice manager at the surgery, as last Friday a Duty Doctor refused to put through an emergency prescription for a dispersible tablet that they should have changed 7 days earlier. We have seen the worse and feel optimistic it will get better, it's just a shame we have had to fight for the help in the first instance!!

  • Dear Bikerbabe. Sounds awful for you. It really does. I’m not sure if you did contact PALS but I would do so if you haven’t. Always best to email so you’ve got it in writing. I know it’s hard to complain sometimes, but you do need to get things working for your husband and yourself. Hope things improve quickly. Best wishes, Julie