Hi Joshua, if I’m honest I don’t think I’m there yet and not sure I ever will be. I think these groups help a lot because people really understand. However, my own thoughts still take over sometimes and no one can help with that - a hug goes a long way though and is always appreciated. Counselling has really helped as it allows me that safe space to share without feeling like I’m a burden or going on x
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Do you really think we ever get ‘there’? I know my thoughts still take over. I have also found counselling very helpful, yes, it is that safe space. I find this community forum is so helpful because it is the only place people really understand me. Keep posting how you are, we are all here to support you. I think every supportive response on this forum is a sort of a hug.
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It definately is Erica!!! It helps knowing other people here understand. Although I wish they didn’t have to. Still, at least we all have each other x
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We sure do have each other that understand and that is priceless.
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thank you everyone for advice
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Hi Alfie, you rant as much as you want, we are all here for you and to support you no matter what is going on for you or how you are feeling. Rejection is very painful. We all have a blood cancer, and there are about 137 different types, and on top of that we are all wonderful, unique, very special people. Take care.
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Hi Alfie
Nobody knows how long they are going to be on this earth. In that respect we are all terminal. Each of my days is a bonus, as I was not expected to survive this long after my SCT (10 years on Monday). There will always be somebody here to listen whether you are having a good day, or a week of bad. Most, if not all, do not judge. I also wish to thank you for all the support you give to others. Most of us have had instances where we have been rejected by friends/family because of our cancer, but it must particularly hurt when there is so much negativity from a group that is supposed to understand and support. Best wishes xx
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Dear Louise and Erica
Thank you so much for your words of encouragement, I feel a lot better today after saying out loud what had been on my mind. I think most people’s fear of dying is so visceral that when they have cancer they only want to hear " success stories " and not from people who aren’t going to " make it" . I totally get it, and will no longer see it as a reflection on me as a person.
Alfie
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Hi Alfie, I am new to this site and I have just read your ‘Rant’ I found it very moving and thought provoking. I am having a bad few days, mostly fatqiue this week and i felt your passion for living come through. So thank you. Death is a subject most people shy away from, but it is the one thing we all have in common.i am so sorry that you feel shunned by people. It is there loss. To be able to share and support each other through these illnesses, is a gift. A kind word, a kind thought , virtual hug when needed is important to us all. We need to learn to support each other without fear of the subject of death. Let’s take our days one by one and live them to the fullest we can.
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Hi gbeam
Thank you for your kind words, I live each day as it comes and take joy from life when it comes my way.
What is your story with blood cancer so far if you don’t mind me asking.
Alfie😊
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Hi Gbeam. Thank you for your contribution here. I hope you find some articles that are of interest to you. I am sorry to hear that you are having a bad few days and fatigue makes us all angry and low in mood. Is there anything in particular that has made you feel worse this week? Take care
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Hi Alfie, this is the best place to have a rant! It must be very difficult at times. I think it’s teally important that you can share it on hear. I hope the next few days are a bit better x
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Hi, I’m still new to this site, so not sure how to use it. I was diagnosed with ET which is a MPN in 2011. I am taking hydroyrea and clopidegral. I am 55yrs old now and only work 3 days a week. I actually worked extra over the last 2 weeks which has reminded me that I need to listen to my body and not over do things. My main issues are fatique, night sweats, headaches and iv had a number of visual disturbance which they say are tia’s. But as you say i try to stay positive and life life to my version of the fullest.
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Hi, I have worked to much this week, so I have worn myself out. I have ET and fatique is one of my main issues.
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Hi gbeam,
I can totally relate to your issues with fatigue it’s the part of my disease that I find the most difficult to cope with. Is your medication the cause of your other symptoms or is it the condition it’s self. Chronic conditions like yours come with a different set of complications but still effect the quality of your life and your emotional well being and it’s ok to acknowledge that but still have a positive outlook.
best wishes
Alfie
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I think it’s a bit of both. I just take time out when it happens, sleep, rest, try to eat and wait to come out the other side. It’s a lovely feeling when I feel my energy levels rising. I try to do the activity, inactivity way of life as much as I can. So if iv been walking, il take time out to sit, read. Or if I’m in work and we do to energetic stuff, like bowling, swimming, I try to add a seated activity afterwards if it’s possible. I support Adults with learning disabilities in a day centre. It doesn’t always work. But I keep trying. I live by the seaside, so I am very lucky that I can appreciate such a beautiful outdoors and I do yoga. If I’m really fatiqued I think yoga, meditation and try to stay positive. Thanks for being interested in my health
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Dear gbeam,
Thank you for the work you do with adults with learning difficulties I am sure they give you as much encouragement to enjoy life as you give them. It’s good to have a purpose rather than just a job when you have challenges with your health, it’s an extra reason to get up in the morning when things are a bit rough. You sound as though you have found the right balance in your life given the circumstances and I think that is the goal all cancer sufferers aim for. i set small challenges for myself everyday as it would be very easy for me to become wheelchair bound as my fatigue sometimes overwhelmes me, but from a psychological perspective it’s not something I am ready to do. I think I am a awkward little so and so
Best wishes
Alfie
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I find that planning my week and trying to balance busy days with less active days, and resting after a more strenuous activity is the best way of dealing with my fatigue too. A spot of cleaning is rewarded with a cuppa, and I try to do jobs in the morning where possible. Trying to keep in tune with what our body is telling us is key
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Hi, great to get to know you. Although I have chronic lymphocytic leukaemia, I share many of your symptoms, especially the fatigue and I really agree with your wise words. One advantage of my diagnosis is that I have really got to know myself emotionally and physically. However I often feel better, then I overdo it and get fatigue either immediately or up to 48hrs later and have to recharge my batteries again. My fatigue can be caused by me overdoing it emotionally or physically. When I was working I was in a cycle of work, housework, sleep. As @Pisces56 I try to do things in the morning. I am lucky enough to be able to have a nap sometimes, but I also think fresh air, gentle exercise and interactions with people are important to me. My family and friends are priceless. I am a ‘lady that lunches’ and a matinee girl. I am also a pilates girl. Yes we are interested in you and your health, please keep posting.
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I can relate to your experiences completely Erica. I didn’t meet anyone else with blood cancer until I was preparing for my stem cell transplant almost a year after diagnosis. At the start I didn’t really know what questions to ask of medical staff and the staff at my initial hospital where I was diagnosed showed complete indifference to my fate. My so called specialist nurse I only ever saw twice for about two minutes. The number she gave me was unobtainable and she didn’t answer my emails. When I initially spent nine weeks in hospital, lots of people visited me including people I hadn’t seen for years and really didn’t expect to see. When I left hospital I barely ever saw anyone. I can only assume that many of my friends found the prospect that the conversation might turn to cancer uncomfortable and backed away a bit. The people I do hear from live too far away. I think I’ve handled things pretty well up to now but there’s only so much of your own thoughts that you can take! When I get in a black mood I play music as a comfort. I’ve also decided to write my story. The focus of the book is my experiences over the last two years but this is interspersed with episodes from elsewhere in my life to show how all of this has changed me. I’m 33,000 words in. I’ve found that I’ve become more reflective on the past so writing things down has been cathartic. I’ve also decided to use my experiences to help others so I’m involved in small ways with this charity and also Myeloma UK, Anthony Nolan and Macmillan. Macmillan have asked me to speak at their new staff induction day next month. I shall try and inject a bit of humour so it’s not all doom and gloom! Also determined to travel as much as I can and enjoy life even if as happens frequently i end up sitting by the sea with a book and alone with my thoughts.
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