Did you feel comfortable in being able to ask questions to your medical team?
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Whether it was about your treatment plan, your prognosis, your diagnosis, anything…
Have a vote and please feel free to share your experiences 
Hi, Su, actually it is this community forum that has enabled me to be able to comfortably ask questions of my medical team. Before, I was the one that walked into my consultants office and when asked me how I was I said I was ‘fine’ and my mind went blank. I also thought I could not question any person I thought of as the professional or expert. It has taught me to write down all my fears, thoughts, feelings, questions, symptoms, practicalities. Then it has enabled me to ask and say everything I need to on my list and to ask those follow up issues and questions too. I also now clarify answers and responses and again write them down. I now feel so much better and empowered when I leave my appointment. Thank you to everyone on this forum. I shall be interested to hear what others say.
I never quite felt like I wanted to ask too many questions as every time I asked one a doctor would look at me as though I’d done something wrong. Quite often my initial hospital wouldn’t keep me in the loop about what was happening and things were sprung on me at the last minute such as the visit to the dentist or some test or other. My consultant wasn’t very interested in me and neither was my specialist nurse. I rarely saw either of them so when I did, I didn’t feel comfortable asking questions. The hospital I had my stem cell transplant in though was completely different. I had a great specialist nurse and consultants that took great care to explain everything that was going to happen and all the possible outcomes. I felt well informed enough at this hospital to not need to ask anything.
Gosh, what different experiences you have had. Feeling really cared about is so important to my hospital experience when I am feeling scared and apprehensive.
@Erica @Franko thank you both so much for sharing your experiences. Erica, it is so positive to hear that the forum gave you more confidence to ask such questions to your medical team. I wondered if you could give any advice to yourself back then knowing what you know now, what would it be?
@Franko I’m so sorry to hear about your experience the first time round, it sounds like you went through so much. It’s so very encouraging to hear your second experience was more positive, I wondered what would you like to have seen/heard more of the first time around?
anyone else, free feel to share your experiences
Su
I think some sort of sensitivity to my situation wouldn’t have gone amiss. I found everyone at my first hospital completely lacking in empathy and acting like they really didn’t want to spend time with me. Quite often I would be lying in bed and a porter would turn up to tell me I was being taken off for a test of some sort with no warning or explanation. I never did get anyone explain the results of any of the tests I had at that hospital including all the scans that I had at the beginning after my initial diagnosis. It made me feel that nobody was really interested. I had a Bloodwise booklet given to me along wit lots of pages printed off the Macmillan web site and this was their idea of keeping me informed.
You show the situation so clearly, in what should be a caring, supportive situation it is the empathic people skills that makes all the difference. Medical skills are taught, but often not the people skills, which can be highlighted, but are often inborn. @SuBloodcancerUK, the advice I would give myself is to gain reliable information and support from Bloodwise. Give myself time as I have received life changing information and my fears, thoughts and emotions are on high alert and all over the place and to honestly and openly communicate about both of our fears, thoughts, feelings and needs with family, friends and work, they are probably similar to mine.
@Franko I can only imagine how tough it must be feeling as though no one is concerned about you, coupled with feeling as though you are not getting all of the important information about your condition. What was it like coping with such uncertainty?
@Erica really great advice Erica! as you say, encouraging people to be kinder to themselves and give themselves time can do so much for a person. it also sounds like you got a lot out of reading through literature from reliable sources?
I think initially the actual diagnosis didn’t affect me as much as I would have expected. I’d had a bowel cancer scare back in 2013 which turned out to be benign but I went through the whole range of emotions at that point so almost didn’t need to. Really it was the loneliness that hit me most. I didn’t feel anyone was on my side. If you weren’t there or away on treatment nobody even bothered to organise meals for you as you had to be in your bed when the catering person came around, about 3 hours before each meal. I feared my mobility problems more than cancer too as I wasn’t sure if I’d walk again and the idea of spinal surgery was mooted which terrified me far more than the chemo. Hospital routines seemed to work against me so I couldn’t plan my day and nurses would often move things out of my reach believing they were tidying up but I’d put things where I could get at them. I was scared about going home and how I’d cope but when it came to it, i couldn’t wait to get out of there!
Yes, sometimes people just don’t think either in a professional capacity or friends. I cannot imagine how your loneliness felt, it sounds such a horrible place to be. As you say a fear of not being mobile is really scary and also the fear of spinal surgery is equally scary. I also think that at that point I would have had too much time for all those fears, thoughts and feelings to whizz round in my head. Thanks for so honestly sharing I am sure many people will relate to you, please keep posting what it is like to be you.
@Franko I can only imagine just how tough coping with this intense feeling of loneliness must have been. I think people often underestimate just what an impact it can have on a person. It sounds like even now, it brings back painful memories? this is so understandable.
Was there anything that helped at all? or what would you have liked to see the hospital do more of?
@erica I completely agree! sharing experiences like this are so valuable for our forum members, and we really encourage talking about this!
There were some consolations. The tea lady was very kind to me and always brought me extra ice cream (I’ve never eaten so much ice as in those weeks!). I had lots of visitors including some people I didn’t expect to see and hadn’t seen in years. Sundays were always busy for visits which was as well as you got least attention from the medical staff that day. Every second Saturday it was Toad in the Hole for lunch as one of the choices. They had to start rationing it as everyone used to choose it! I could usually grab a nap in the afternoons as they did less checks then. I had my i-pad for music and TV and a kindle that someone kindly brought me so I read quite a lot. It wasn’t all doom and gloom but I was glad to be back in charge of my own destiny when I went home 
Hi @Franko. You highlight a real problem with care in hospitals. I originally went to my local hospital with breathing problems and palpitations after calling 999. The first responder was very offhand, and said I could go to hospital if I wanted to!!! She took me in her car, but made it obvious that she thought I was a time waster. Thankfully the doctor I saw said I had done the right thing and admitted me. However I was stuck in a corner between two men, and left there for two days, before being transferred to a ward. Again I was mostly ignored, and eventually I discharged myself. My GP was very supportive, and eventually I went to a different hospital and from then on my treatment was excellent. During treatment for HL (which the 1st hospital had not picked up) I had to go to 4 different hospitals, where all consultants were up to date with my condition. All involved in my treatment gave me time to discuss what was going to happen.
I also had plenty of time to chat to the nurses while they were administering my chemotherapy, taking blood, or cleaning my Hickman Line
I still use my local hospital to deal with long term after effects, and on one occasion I was ignored by a locum, and I complained on NHS Choices. Since then I have not had a problem there. I reckon they have a marker on my folder, as they realised they were lucky that I did not make an issue of the way they had missed my HL diagnosis.
I did consider complaining but I don’t want to heap further pressure on already demoralised staff. My main concern is that things are made better which is why I have started to engage with charities like Bloodwise and Macmillan. I’m also on a patient and carer advisory board for Myeloma UK. I’m not sure what the best way to address the care issues are. I currently visit King’s for my reviews and they are concerned as they have asked Lewisham to take back responsibility for my care but never get a response from them. I still haven’t had the Zemita I was supposed to be given during my chemo. King’s have written three times requesting that this sorted out as they are only supposed to see me once a year now I’m post transplant. I had my latest review yesterday and all is well and they’ve booked in for 6 months rather than a year as they didn’t want me waiting that long without anyone monitoring me.
I hope Lewisham pull their finger out soon. I’m pleased your last review went well.
@Franko I hope you are keeping well? we are so sorry to hear about the difficulties you have had here. If you would like to talk this through with us in more detail, you are more than welcome to give us a call on 0808 2080 888 or drop us a message support@bloodwise.org.uk. In the meantime, we are so pleased that you have felt comfortable enough to share your experiences so openly on the forum with others, I’m sure it’ll be a great help to others who might have had similar experiences, thanks so much again for posting.
Su
Thanks. I think it’s almost ancient history now and I’ve coped pretty well mentally with it all. I’ve found I’m stronger than I thought I was! It’s Been great to chat to people on the forum and I’ve enjoyed meeting other people with blood cancer through the support group running at Guys Hospital and the mindfulness course I did. I’ve made a lot of progress writing a book about my experiences not just from the last two years and that’s helped too.
@Franko No problem Franko, the support line is always here if you do need it. It is so encouraging to read about how you found ways to help yourself, this must have been so empowering. It sounds like you got a lot out of the support group?
I think it was just good to speak to other people with the same condition. Friends and family have been kind but don’t really understand the enormity of it all and I’ve found that friends have to some extent backed away in the last few months probably out of awkwardness. It was a bit of a surprise to find so many positive people in the support group and the fact that we generally laugh about things as we understand each other.
Hi, that feeling of not being isolated and the only one is wonderful. Yes, family and friends can be loving, caring and supportive, but for me it cannot beat being with people who are in similar situations and more importantly for me having the similar fears. practicalities,thoughts and feelings. They say laughter is the best medicine!!! keep posting how you are getting on.