Oh, I love it, scuppered by the small print in the rules and I bet you had learnt to make jam and also the words to Jerusalem, It’s their loss.
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@Blackhat @Erica @AnnaMam First of all, Anthony, you sound a delightful person. Perhaps you ought to invade the annual WI get-together like the Calendar Girls did, and get the rules changed! Anna, i love that your Dad goes to Weight Watchers for the social life (especially as I met him at Impact Day) I am not afraid of my own company, perhaps having grown up in a household with 7 siblings I appreciate it more. I can sit in a room of people and lose myself in a book, or listening to music.
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Hello everyone,
I’m 10yrs post AML & SCT.
I’m the opposite to you all. I love being with people, chatting, laughing etc.
I live in a small village with my other half, in an ‘empty nest’.
My husband leaves for work @ 6 am & returns around 5pm. Some days I see no one all day & then am a motor-mouth chatting away 19 to dozen on his return. Not exactly what you need when you’ve just negotiated the A3 at rush hour!
Anyway, I decided I needed to give something back. For 4 years I volunteered at the Macmillan office in the hospital that treated me, working alongside the team that had become like family.
Due to the decline in my mother’s health, she’s got Altzeimers, I had to give up the 30 mile round trip to the hospital. Still wanting to give something back, I started volunteering a day in the charity shop of the Mary How Trust, a local charity. They do a well-person full check up for a donation, & it was to them I reached out when my GP’s were getting no where. I can’t praise the NHS enough but my bug bear is the GP’s & the system. It’s like Snakes & Ladders, GPs send you up one ‘ladder’ of investigation & if that’s all ok, you slide down the ‘snake’ to the bottom and it all starts again!
I love volunteering!
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Hi, it sounds as if you have done so well reaching out and giving back, within the looking after of your mum goes. Yes, the NHS are brilliant, but there are struggles along the way. I agree volunteering is so important and brilliant and you meet some wonderful people. I laughed and had a picture of your husband walking in the front door, after a stressful work day and journey home and you starting to chatter away 19 to the dozen. Both natural feelings and needs. I actually went on a retirement course that pre-warned about this scenario!!! Keep posting we are a community forum here as well.
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Hi @Corfu80. I also enjoy socialising, but find it more tiring as I have medium to high hearing loss after chemotherapy, and trying to concentrate on conversations and not to interrupt (unintentionally) is hard work! I used to teach very young children, and parents often complained that their children never told them about their day in school. I used to swing it round as ask them how they would feel if they returned from work to a barrage of questions about their day, so it made me laugh when you told us about your poor husband.
Congratulations on being almost 10 years post SCT and on all your volunteer work. Are there any special topics that you have found on the forum?
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I think we all enjoy socialising or we wouldn’t have taken on our roles as ambassadors… I love your company @Pisces56 and @Erica its a shame we don’t live nearer to eachother. I think the point we were making was that we’re also happy in our own company which is ok too. Being with people who understand you is such a good thing
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Love yours too Anna and Erica. Will have to try and sort something in the Spring xx
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It’s a date!!! + @AnnaMann
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Hello,i don’t often have down days,but presently i feel so alone at work,as staff gather together and talk,I’ll approach and they’ll stop talking, i feel like a leper,and then dont know what to say,i usually walk away and concentrate on work shutting down almost. Does anyone else have these feelings.
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Hi Rebecca @ NewYork2011. Having an illness diagnosed often makes us more sensitive, especially when involving the C word which is still a little taboo, and most of us have had this happen. I think there are probably two issues here. One is that you feel that the conversation may be about you, the other that staff don’t know what to say. You could take the bull by the horns and say that if anyone wants to know about how things are going that you are happy to discuss your situation (When I had a situation a while back I just waded in and said what was happening, that I was dealing with it and just wanted to carry on as normal). If you don’t feel that brave perhaps try starting an unconnected conversation…" Anybody got plans for the weekend?" " I’ve just finished a book and need some ideas what i might read next" “What do you all think about the new series on TV?” Also if there is one staff member you connect with, perhaps take them into your confidence. Good luck, and you are among friends here
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I suffer anxiety and BP which doesn’t help. I’ve always felt positive and upbeat and shored everyone up since the beginning , mostly my family, around, so they don’t worry about me. In work it’s a different environment, they don’t live it everyday, and realise what an impact its had. Sometimes I just want to hide away and get off this roller-coaster of a ride, and not have to explain myself or make an effort to feel normal enough.
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Rebecca, it sounds as if you need someone to take that load off your shoulders. Do you have a Clinical Nurse Specialist that you can talk to? Perhaps get in touch with MacMillan, or the Bloodwise support line as they have people you can talk to, and maybe your GP can help. Being in the forum you are able to take part in conversations, but it sounds as if you need a human voice so that you can be properly listened to. Take care xx
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Ive been signed off from my therapist which i had long before diagnosis,and ive never felt so calm as i do now. Days like today are few and far between. I have meds for the anxiety. Going through the menopause alongside the nhl is a daunting task,with symptoms masking each other. My nurse is brilliant,but i only call when i need a question answered,i wouldn’t ever want her to feel i pester her. X
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Hi, I really related to you saying you just want to get off the roller coaster of a ride and not to have to explain yourself or make an effort to feel normal, I certainly did not realise what my CLL took out of me emotionally and physically and as @pisces56 says and her ideas and I think a lot of us have struggled going back to work, I felt in a bubble and different to everyone else, I did not know how to be around them and they didn’t know how to be around me, we all struggled, it was a horrible time and so sad as I had loved my job and was proud of my department. I was super sensitive and watching their behaviour and critically analysing it as opposed to looking at my own behaviour. Be kind to yourself and keep posting what you are going through emotionally and physically because you are not alone, we and the Bloodwise support line are all here to support you.
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Thank you for your support and understanding Erica. You’ve made me feel that im not alone in feeling like i do. X
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I think the feeling of loneliness is the hardest. Even if you have so many people around you it is so hard to explain, and for me, my own thoughts, especially when trying to sleep, are filled with an overwhelming feeling of loneliness and create fear. These times are the hardest for me. We all know watch and wait can go on for years and I always question how long people will want to listen. It’s a tough one isn’t it. That’s why groups like this are so important to many of us X
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Hi Nichola you have hit the nail on the head again, sometimes family and friends cannot understand and even want to make it better or not talk about it for many reasons. I have certainly found that this community forum is where people really understand all the time, however dear family and friends are to me. Me and my head are a dangerous combination, especially during the night, the darkest hour is just before dawn. I had not thought of loneliness creating fear but you are right. There is nothing like feeling part of something, my Bloodwise family is very special to me.
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A very special group!
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A very special group of very special people.
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Hello @Nichola75,
Thank you so much for sharing your story with us and your response will resonate with many people in our in our online community. You mentioned a little bit about the feeling of loneliness. Have you found a solution to combat this feeling? Your tips or suggestions may be helpful for others in similar situations.
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