Is that light at the end of this self inflicted tunnel

FormerMember
FormerMember
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Well my plumber has arrived so today is the day I get that downstairs toilet and it couldn't have came at a better time. Won't go into details but I have had a rough 2 days. 

I am now well and truly at the stage where I just want everything finished. I have told my husband to just say no and stand his ground if I suggest anymore decorating or improvements. My friend asked why I decided to do it now and. It sounds silly but it is because if my next scan shows more progression it is highly probable treatment will stop and things should proceed rapidly. She was a bit bemused as I was doing all this and might not be around to enjoy it. But I would see it done and i know that my husband would not do it himself as he is very much a make do person. It also feels like our last house project together and although we are both exhausted we have had some laughs along the way and we have made a good team. I hope he will remember that.

I don't know if anyone else finds the oncology help lines an ordeal. I had to ring them yesterday just to ask if it was OK to take a particular med whilst on my chemo meds. Well we had to go through the whole check list and as usual it determined I needed to go to hospital. Not my hospital 5 mins up the road but one down the motorway. They did point out they would send transport for me but got rather annoyed when they finally accepted I was not going.  I hate ringing as you always feel worse after talking to them and you get the guilt trip from hell. Today however a nurse rang to check on me and she totally understood and agreed I was better off at home than sat for hours in hospital waiting rooms. Technically I still tick the boxes to go in but she knows I know my body best and is going to check me again this afternoon. Just speaking to someone who listens and doesn't just depend on the check list makes you feel better. On the other hand I know the help line staff are not usually medically trained and they have to stick to the rules. 

  • FormerMember
    FormerMember

    Hi

    I totally understand your need to get the job done and finished. It’s like tying another loose end. In a way it’s a luxury - one that those who drop down dead from a heart attack don’t have. 

    I have no experience of oncology helplines. I didn’t even know they were a thing. I have had occasion to call on the on duty oncologist once and I spoke to a registrar who gave me excellent advice on the phone. Your experience sounds very frustrating but thank goodness for that lovely nurse. 

    I hope you’re having a lovely day. The sun is out here at last. I’m sitting with the window behind me and the sun on my back and neck. It’s wonderful 

    xxx

  • FormerMember
    FormerMember in reply to FormerMember

    Weather not so good here quite wet and dark. It is freezing as the plumber, who has just disappeared off somewhere, has the door open and a hole in the wall. He says it will be finished today though so fingers crossed. He seems nice and I have had his full life history since he arrived. 

    I am not feeling any worse physically so hopefully things have settled down now and all will be fine. 

    Our Chemo ward used to run the helpline we high was great but now it goes to a central service and they basically tell you to go to the hospital designated for that day for us cancer patients. When you get there however it is just an A&E set up and you wait hours to see someone and even longer to get any treatment. They sign post you there for a blood test even and you can wait serval hours when there are several closer blood clinics that will take the blood and get the results in less than 2 hours. 

    I should not complain I am lucky living so near a hospital. 

  • FormerMember
    FormerMember in reply to FormerMember

    Oh I think you can and indeed should complain . An A&E department is no place for many of us who hover around the neutropenia level from treatments. 
    xx

  • FormerMember
    FormerMember in reply to FormerMember

    Oh we have the chemo helpline, mostly they have been ok but I phoned yesterday (still being sick and meds had run out) and I got quite a snappy one rattling through her checklist - my favourite was when she asked “am I eating enough” so I started saying how I had lost a stone in 2 weeks and she snapped “this is a yes/no answer” then repeated the question like I was an eeejit.  Luckily it made me laugh....

    i always get referred to my chemo ward nurses for a phone chat and precrisptiins but due to my rapid weight loss, tomorrow I get to go to cancer a&e or the cancer assessment unit as it is properly called where I will wait for 6 hours then get sent home.

    i get why they have them but they are not always the best.....I feel for you.