These publications are so useful aren’t they, at the beginning and to refer back to. I quite often look back at mine.
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I was treated at New Cross, and my friend and I did an awareness day there 3vyears ago for Bloodwise. The team there are fantastic. I particularly remember Kelly, who was the nurse who took me around the ward before I started chemo. You are in safe hands there xx
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Hi @AnneB Welcome also from me. And thanks to @Erica for initiating such an important topic. Anne, I also have CLL and have been living with it since 1997. So as Erica said, feel free to ask any questions that help you, Interesting way your doctor had of ‘telling you’. Mine was the opposite extreme, he just came out with it at the start, “I am sorry to tell you that you have leukaemia”. We all remember that first time. It is never going to be easy whatever way you are told. (And to be fair, I suppose it is not easy if you are telling someone either).
As for telling other people, I went from being totally secretive (for the first 10 years I only told close family and friends) to being entirely open. I decided to be open in the hope that my story would encourage others and also because I was tired of being secretive. Only told my daugher last year (When I was having my treatment she was too young to understand and after that we figured no point in worrying her especially when she was doing her exams) I agree that people find it hard to know what to say when you tell them, but overall I feel a great relief that it is now in the open, and I feel I can discuss it with friends (or not) without any problems.
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Hello - just saw your (@Pisces56 and @Erica’s) questions. They’ve been Watching and Waiting since 1995, and I’m relatively fit cancer-wise (tho’ I have what they call a Rare Mitochondrial Disorder [unconnected, as far as they know, with my CLL], which make me a bit wobbly and affects my speech slightly). For the latter condition all they can do is Watch and Wait, as there’s no treatment. I’m enrolled in one or two research databases for this neurological thing, but there don’t seem to be any positive signs of clinical trials or even research progress.
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Hi @BobK99, we are here for you to share what it is like being you and you can contact the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 10am-7pm Monday-Friday and 10am to 1pm Saturday and Sunday or via email at support@bloodcancer.org.uk if you need to talk, I think sometimes we can understand as people close to us are not able to. Take care.
I think its always a knee jerk reaction to tell someone as soon as you hear that you have cancer. Probably more so for me because i was told over the phone but imagine most are called into The doctors or a consultant at least. I guess its only when you tell someone that the brain starts to process what you have. The need to tell someone, although its probably the wrong analogy but its breaking good news to someone who is equally going to be happy but the complete opposite, you want your emotions and feelings to be the same as someone else’s so you aren’t alone.
I was diagnosed With having PV about 3 weeks ago i have come, very quickly mind, to the decision i am not going to tell anyone. There are a few reasons for my decision…
Probably the biggest one, i lost my sister (36) to cancer about 6 years ago. From her initial diagnosis to her passing she lasted just over 8 months. I was with her every step of the way from hiding and caring for her as she lived with me to avoid extended family and friends knowing as she lived with my parents to holding her hand and telling her “to stay with us, it aint over, dont go!! I love you you cant leave me and us like this!!!” and seeing and feeling her very last breathe and her eyes turn while lying in her hospital bed. As a family we went through so much during and so much after, and while her memory lives so strong with us a huge canyon and void lives with us everyday. Now for me to come out and say i have cancer… (from research, though its not curable and rare, its definitely manageable and its not as aggressive as most other cancers) regardless of the percentages and all the research which didnt favour my sister, there is no way i could survive that ordeal again if i was whisked back to experiencing what we did. Naivety i think and promises to my sister got me through, but the wealth of feeling and emotions of losing someone so close, i would selfishly kill myself right here right now… i just dont have the strength. Now is probably best to mention that as an adult i have self harmed alot and after a few months and years of my sisters passing and being alone (parents had each other, my other siblings all married and with young kids) i wont lie, i think ive had 4 failed attempts, so getting cancer… i sense some irony. (Fyi i am and have been getting some psychotherapy for the past 5 years to help with this)
If i cant handle this trauma again how could i put my immediate family through this. My folks especially both in their seventies and they already lost 2 of their children… a third?..
Another reason, i cant answer any questions, i just dont know how many years, i dont know the treatment, i dont know the symptoms, i dont know how and when ill be in hospital, i just dont know the answers to questions they will ask.
Another is, right now, i simply cannot support them with their emotions in handling this. Im the kind of person you want when s@#t happens… im a problem solver, caring, attentive, positive and reliable and great at turning a frown upside down, but ive seen how the people around me handle problems and situations? I know it sound egotistical but ill have to show and tell them how to support me and its really something i dont have the energy or motivation ti do. I need to focus on me and not giving up, seeing people sad upset and hopeless isnt going to help, esp when i need that pick me up. I dont need people planning my funeral or reminding this may be the last time i see and do stuff…
Another reason, is the label and stigmatism. Im still relatively young (38 but feel much younger and look it with a good shave and hair cut!} and single. My condition as mentioned is manageable and reading and watching peoples stories looks relatively normal. The treatment isnt as aggressive as other conditions and my physical appearance, touchwood, will stay the same so i think, i may get away it. If say im on a date when do i say about my condition, yes its not curable but you could still die before me? Would you date someone who has cancer?!
However with all this in mind, ive been off work for a few days as i am still feeling unaware of it all like a zombie, i feel like my body and mind have given up both singularly and collectively and living alone and being alone, and feeling somewhat the same, just doesnt fit and feel right. I wish i could cry but i cant (past laser eye surgery) prevents me. Im pretending im at work to my family while being off which is causing so much anxiety as with covid and weather being pants, i have no idea where to go and what to do… going to the hospital though its nothing hardcore alone, makes you feel lonely and uncared for so i remind the nurses ive not told anyone everytime.
I know im doing the right thing both for those around me and for myself, and i certainly wouldnt react to telling the world straight away without careful thought. (Speaking to someone who knows you but its unattached to your everyday world may help you to think objectively and not selfishly about their opinion and needs if that makes sense) is something i would recommend and play out both decisions, imagine the best and worst case scenarios for both telling people and not telling people, and also write things down.
Anyway im still in my early days, and i am so sorry if ive gone off tangent with this discussion but i guess writing this is allowing me to justify the choices ive made. Time will tell…
If you managed to get this far, well done, and thanks for reading and apologies for any spelling or grammar mistakes, its late and im waffling…
Take care and be kind to yourself…
V x
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Hi @Rammie18 I can only imagine how devastating losing your sister must have been, and how unbelievably tough it still must be for you and your family. It sounds like this new diagnosis is understandably bringing up a lot of difficult memories. You’ve mentioned thinking of killing yourself, and previous attempts and self harm. We are worried about you and are concerned about your ability to keep yourself safe.
If you’re at immediate risk of harming yourself, then this is a crisis and you should go directly to the Accident & Emergency (A&E) department of your local hospital to get urgent help.
I’m going to drop you a message you privately if that’s okay to discuss additional resources and provide more support. Take care, Alice
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Hi @Rammie18, you sound a lovely, very caring of others person.
Of course I read all your post it was a honour to do so.
You and your family have gone through a lot.
It sounds as if you might be going through feelings of loss, I remember those feelings in a similar, not identical way, as we all go through the process in an individual way.
However I am also very concerned for you and I have just seen @Alice_BloodCancerUK’s post to you giving you good, caring advice and she says she is going to send you a private message.
You seem to have such good insight into yourself and can articulate it so well and it is OK to go off tangent, if you feel you did, I didn’t think so as that is what this forum is for.
You say about speaking to someone that knows you but is unattached can help and perhaps that is why I have found this written forum and contacting the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 10am-7pm Monday-Friday and 10am to 1pm Saturday and Sunday or via email at support@bloodcancer.org.uk has helped me. To talk to someone that does not know you the Samaritans is always there for us on 116 123.
Take care and we are here for you.
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