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Regional teaching day - a patients perspective

Hi everyone,

I've been asked by my consultant if I can do a short session at a regional haematology teaching day that she is holding for the doctors, juniors, and senior nurses in my region next Wednesday. She has asked me to come and talk to them about my experience, and the good things and bad things I felt about my treatment and the medical teams.

I wrote a blog during my treatment so I'm going to re-read that before going along to refresh my memory on the things that bugged me, though in fairness there weren't that many things.

So I'm throwing the door open to see if anyone has any experiences, good or bad, that they'd like me to raise with these guys? Is there anything that you feel was done particularly well, or that could have been handled differently? Were you treated with dignity or did you feel like the doctors were talking like you weren't there? What frustrated you during your treatment?

For me, the things I can think of so far are; being woken at the crack of dawn for blood tests when I hadn't been asleep for long; the ridiculous wait for pharmacy supplies when being discharged; being discharged and admitted at silly hours; the feeling of being vulnerable to infection in multi-bed bays when other patients were unwell and I was immuno-suppressed or neutropenic; and being used as a pin cushion for junior doctors to practice cannulating me when my veins were very poor (I remember one junior doctor tried five times before giving up!)

Does anyone have anything else they'd like me to add to the list?

Steve

Comments

  • Steve

    Good luck on Wednesday, I'm sure your input will be well received.

    If there was one thing for me that had the biggest impact after transplant, I think it would be that feeling of total weakness leading to depression. I found it very hard to accept that I had walked into the hospital pre transplant feeling quite well but then to be discharged a month later feeling and looking a different person (weight loss).

    The medical staff had, to be fair told me that recovery was going to be months and we had been given lots of written information but I don't think any of it really prepared us for the outcome. I also did wonder if it affects people differently, and maybe younger people recover more quickly.

    Having said all that and with hindsight it was the right decision for me to go for transplant. Also I had lots of support from my family and encouragement from my transplant team to be motivated and positive.

    The thing that has really been reassuring for us is having the 24hour Hotline telephone number for our local cancer hospital. We have made use of it many times, the first point of contact is a nurse who in turn contacts the transplant unit, always within an hour we get a reply back with whatever action is required.

    Hope this helps in some way.

    Peter

  • Thanks Peter.

    I'll bring those points into the discussion and can relate to the feeling of weakness directly myself, as I was absolutely the same. Like you I had an idea of what to expect but never expected to be so weak. I guess as I spent a lot of time in bed, both in hospital, and whilst I recovered at home my legs became incredibly weak, and when I did get out of bed the only way I could get up back upstairs was to crawl up on my knees.

    I'm reading through my blog at the moment to refresh my memory. I didn't realise I'd written so much at the time!

    If anyone has any other thoughts I'd welcome them before Wednesday.

    Steve
  • I saw my consultant today following last weeks teaching day and she said the feedback from the patients perspective session was really good. The junior doctors and registrars found the session really useful and in most cases more useful than they expected it to be.

    The main focus of the discussions were my feelings during treatment and transplant, how did I cope being in hospital so long, how isolation affected me, whether I felt in control during my treatment, how was I diagnosed initially and the effects on my family.

    There was also a lady there with me whose husband had been through the transplant successfully a few years ago. She was able to talk about everything from the perspective of the family around the patient and the guidance and support they needed.

    In all it was a very useful session for all concerned. The scores for feedback were all 4 and 5 out of 5 so we must have done a reasonable job.

    I get the feeling my services to talk to similar groups may be called upon again in the future and I'm more than happy to help.
  • Thanks for the update, sounds like you made a good impression, so well done.

    There is no doubt that the isolation and effects on the family are a major part of the transplant process and probably very hard to explain at the time because of the nature of the treatment.
    It's definitely a good idea to be able to let the transplant team as a whole know what patients go through in the way that you have done. Also the feedback has been positive so it must be a good thing to do.

    Always good too, to meet and hear that people have had successful transplants years ago.

    Don't throw your notes away you might need them again.

    Tomorrow I 'm off to Sheffield to give a talk about the experience of a transplant to a group of new Anthony Nolan fundraising recruits, it helps to give them some background when they are out and about.

    Peter
  • Good luck tomorrow Peter. Let us know how you get on.

    Like you I agree it's useful to give an insight into what it's like to go through a transplant, particularly those who are looking after you. It's easy to get snappy with them when you feel under the weather but if they understand more about how you feel it will hopefully help them carry on doing their fantastic work.

    Steve
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