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FalloutOnTour
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Hi Lewis!! This week has been a crazy one at uni! I am studying medicine so I am all over the place at the moment but enjoying every second of it! I found that the gym helped a lot with my fitness so glad for that, I haven't done anything in the way of fundraising but more taking up roles like this where I can help others…
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Hi Lewis!! Sorry for the late reply, I have just started uni and its been really hectic. Wow! Im glad to meet another young person on the forums and by the looks of it, we were going through treatment at similar times. I 100% had to deal with all the struggles you have mentioned, especially my fitness. I have been working…
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Hi Clare Now Scotland have been free from restrictions for a while now, I thought i would leave a message. It’s been honestly refreshing to get back to normal after a difficult 18 months for everyone. Even though there is an increase of cases, I still feel safe if i follow all the rules and wear masks in every public place…
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Hi Laulau That's great to hear!!!! Hope you are well Cameron
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Hi Jess I was reading over everything and saw some worries I might be able to help with as well! I also didn't want a feeding tube at all and really focused in mouthcare. Like Michelle, I also managed to avoid it. along with brushing my teeth, I also used mouth wash which really worked. Starting mouth care as early as…
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Hi Jesjesica1 I am one of the other Online Community Champions like Michelle and Steve. I am so sorry to hear of your troubles and the thought of a stem cell transplant. I also have had relapses but for Non-Hodgkin's Lymphoma, one of which ended in a stem cell transplant. I was definitely nervous about having a stem cell…
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Hi Steve I had my second vaccine two weeks ago now. It was Pfizer i had. I was unwell with both vaccines. Paracetamol was enough to cover the first dose but not the second. I just mainly felt tired and sick all the time. I think it might be a vaccine thing though as I was unwell after getting all my baby jabs again. I have…
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Hi Buffy Sorry for being late to the conversation, I am one of the other Online Community Champions like Steve and Michelle. I'm sorry to hear about your troubles in regards to your brother. As everyone has already said, your brothers medical team are the best people to talk to. Cant wait to hear how he is getting on!…
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Hi Laulau Even though I am a couple years out of transplant I still treated the shielding periods like having low neutrophils. I always stay on the side of caution as well, I haven’t been to a busy place like a shop since COVID started and always hand gelled every 10 minutes it felt like!! Since, I am not in education at…
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Hi LauLau It’s good to hear you are doing so well!! I can’t give much advice in the way of breathlessness on how to counteract it, but what I found is with time, your stamina will gradually increase and be able to do a little more each day! In terms of sensitive skin, I had my problems with this in the past. I use a water…
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Hi Laulau Sorry to hear about your troubles. I also had immunosuppressants until around 6 months after my transplant and like you, experience dips in energy and interrupted sleep. I found what worked well was just taking it slow for a while and doing small things at a time. The fresh air also helped a lot so going out for…
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Hi Raka Sorry to hear that. I have had 3 battles with cancer starting from 2013 until my transplant in 2017. I am currently 18 at the moment so I spent a lot of my schooling years in hospital. I haven't had multiple transplants but I do know what it is like to relapse or go through another treatment plan even when you…
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Hi Steve Thanks!! I am starting to have offer holder days so I will get more information about the courses before I make a decision. In regards to side effects, like you, Everyone I have talked to has just had a sore arm as well and nothing more. Hope you are well Cameron
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Hi Steve!! Congrats on 500 posts/comments!!! Its been great getting to know you for the short period of time I have been volunteering! Due to being an NHS volunteer, I got my covid vaccine 3 weeks ago and I can report that I didn't get any side effects for the vaccine. I had a sore arm for a couple for a couple days after…
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Hi Michelle Thats great to hear you have everything sorted now. I think the cataracts are a side affect of just having loads to treatment. They were actually picked up before my transplant and were monitored throughout the whole process as well. I was discharged by the "eye people" at the hospital and my cataracts are…
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Hi Michelle, Im doing well, hope you are too. I did, at times, have dry and gritty eyes but nothing major to shout about. However, due to having loads of chemo and treatments, I developed cataracts which are cloudy patches on the lens of your eye which stops light getting in making your vision hazy almost. I have glasses…
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Hi Laulau, I didn’t have this problem during transplant but I did during treatment before my first relapse. I had new nails growing under my old ones. My old nails used to slowly move away from the nail bed towards the tip before they eventually fell off. This left a new nail underneath. It only happened on certain finger…
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Hi Laulau, I found having a really sore mouth really evident during my transplant as well. I found that using the gel and mouth wash consistently really helped keeping my mouse clear of any ulcers. I was adamant on not having a feeding tube so I kept my mouth clear for that reason as well. Hope you are doing good. Cameron
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Hi Laulau, Congrats on 100 days!!! I think doing a family zoom is a great idea on Christmas and might steal it :D. As everyone has said, day 100 is a significant day in everyone's transplant journey but your immune system is still not fully recovered yet. I would still speak to your medical team and consultants and seek…
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Hi Steve and Michelle, How are you? I'm glad to hear I'm not the only one having a quiet Christmas this year. As you both said, its definitely the safest way to spend Christmas this year. Its been good to hear how yourselves have gone about the shielding list. When I went for my transplant check up in June, the doctors…
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Hi everyone, sorry for replying late. I've been really busy with other things and kept on meaning to watch the video. I 100% agree with the vicious cycle of breathlessness. My second relapse happened a month after finishing my 2 year low lose chemo called vinblastine. So my body did not really get the chance to recover at…
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Hi Michelle It was something that always cheered me up talking to friends and teachers as it was something different from the same boring day. Its surprising that you did not get really any opportunities to meet people in a similar situation to you. For me, there was lots of opportunities to meet others during treatment.…
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Hi Steve Hope you are well, I was 11 when I was first diagnosed, and had my transplant around the age of 15. So my story stretches over a couple years! It’s interesting to hear everyone’s approach to how they cope with life during treatment and how they transition back into “normal life”. It is great to here that you…
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Hi Michelle How are you? Thank you for the positive words!!! Believe it or not, there was not really much difference from communicating with my friends in isolation and communicating with my friends during lockdown. For me, how I kept up with my friends during isolation was through FaceTime. I would spend hours talking and…
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Hi Michelle!! I didn't really have problems with staying warm during treatment or post-treatment. I am also on vitamin D supplements which helps out. I don't know about you, but I burn really easily during treatment so I was always lathered with factor 50 sun cream. :)) Sorry I couldn't be more help. Cameron Online…
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Hi Michelle Hope you are doing well. Being a teenager during lockdown, I started to progressively to go to bed later and get up later since I had no school or commitments. I was starting to not like this because I would wake up, get ready and it would be lunch time and half the day was gone. So when I had to start to think…
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Hi Michelle (again :)) ) Thank you for the kind words and will start a discussion about having a transplant as a young person. Hope you have a great day, Cameron
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Hi Steve!! What a coincidence!! Its good to here you are doing good. When I was diagnosed at such a young age, my focuses on what was important to me would have looked different to you, I will certainly start a discussion on what transplant and cancer was like as a young person. Thanks!! It was a really rewarding…
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Hi Michelle! Its great to here you are doing well. After Transplant I found my energy levels so depleted to the extend I could only sit in a chair for half an hour or so at a time. This was the case until I could get out of isolation and start walking around the ward. Even at this, I was still getting tired after 30…