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chelle_16
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Hello Laulau1 I have not yet been called as my county is behind on setting up hubs and putting in support to vaccinate. I know counties are on target and some are a little behind. It is good you have been called up. How do you feel about it? Best, Michelle
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Hi Raka, Your more than welcome. Steve put it just perfectly "we all have something in common" no matter age. We can all relate to feeling exhausted, weak, down. It's one of the toughest journeys for your son and for you and the family too. Be kind to yourself. Maybe you and your son could have a little fun exploring…
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Hello Raka I'm one of the Online Community Champions here on the forum. I was 29 when i got my transplant so abit older than a teenager ? As an adult it was tough dealing with feeling exhausted, weak and under the weather. As an adult i had more understanding of why and knowing what is making it worse or better. But can…
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Hi laulau1 Sorry to hear you are still struggling with your mouth. I had something similar during treatment and was treated with several antibiotics as Steve mentioned. Everyone is different with what they find useful when it is chronicly sore. I used several mouth washes and a paste called Daktarin which I ate almost by…
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Hi Hanna I empathies with your son and i understand how uncomfortable it can be at night. I experienced intense itching in thr day and a lot at night. After alot of trial and error i discovered that my skin was infact affected by GVHD but without a rash. I was told it was extremely dry. One of 2 things that helped was…
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Hi Cameron I'm well thankyou. Pleased the cataracts don't inhibit your sight too badly. I had mild GVHD of the eyes from Day 1 of my SCT however after a few months it resolved. I was aware cataracts can occur after all the treatments but i think amongst all the complications or long term side effects mentioned it wasn't…
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Hello Steve I managed to catch some of the live discussion and also found it very helpful. Unfortunately I caught the last 20 minutes so will definately revisit via the link you have shared so thank you for doing that. Honestly, finding things harder with lockdown no.3 as is everyone else. I'm trying to engage in my…
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Hello Steve, Thank you for this reassurance and the link. I think that will be incredibly helpful for patients. I, for the most part didn't struggle with the shielding and lockdowns with living alone with my dog i felt ok. Isolation, as like every other blood cancer/blood disorder patient it is not a new concept to isolate…
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Hi Steve and Andrew I concur with you both. Such an important and invalueable contribution people can do to help. For me I survived by getting my transfusions, especially platelets. I use the platforms I'm involved with to reiterate the importance. I know a few people that support blood donation but there could always be…
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Hello Laulau1 Your feelings are completely understandable given the mile stone you have reached the results pending are important to you. I had my Allo in 2019. I recall being very anxious after. I struggled with the regular trips back to London where I had all my treatment. For me my anxieties came out in wanting to know…
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Hello all I just wanted to reach out and offer a space to talk after the latest governement announcement and with it being christmas season. It is hard enough going through any treatment and transplant journey let alone with these forever changing rules and regulations/expectations. How are you all feeling/coping? All the…
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Hi Laulau1 The toothpaste change and a soft tooth brush sound like a good idea. Fingers crossed it improves for you. All the best, Michelle
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Hi Laulau1 Sorry to hear you are experiencing a sore mouth and ulcers. I experienced a sore mouth and found ice lollies/ice cream helpful. Although it is yummy you can't eat all day. This also isn't really a treatment more of a way to sooth the soreness. I used the same as you throughout the first few months after my Stem…
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Hi Laulau1 Great to hear from you and Congratulations on 100+ days I'm close to 2 years post but will still be deciding to greatly limit seeing the family. I will be seeing my Gran as she lives alone and the catch up with others on video chat. Whennit comes to extended family there would be too many of us in one room and i…
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Hello Cameron and Steve It is interesting to hear how people have navigated shielding based on their position in their transplant journey. Ofcourse it varies for everyone as we will all face slightly different challenges i.e. medications. That has been the case for me during the lockdown. I have shielded since March. I…
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Hello Katie First of I want to introduce myself, I'm Michelle one of the Online Community Champions here at Anthony Nolan and stem cell recipient. I'm so sorry to hear your son has the BK Virus I can imagine this is causing you both a lot of anxiety. It sounds as though he is really going through the mill. Whilst I can't…
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Hello Cameron good to hear from you. I hear you when you mention "boby not getting time to recover before transplant" It is a tough thing that loss of stamina, strength, endurance and so on. When explained the way Chiara has it makes it easier to understand (for those just starting their journey) what to expect and how to…
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Hi Cameron Im well thankyou. Thankyou for giving more insight. I think all of us child or adult have all adjusted to the concept of isolation and probably well acquainted with the idea. Making the intial lockdown phase easier to accept. It sounds it was very valueable for you to have the communication with your friends…
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Hi Cameron Thank you for sharing your story. It is a credit to you to have reached your goal despite your challenges and barriers. Know doubt you experienced Isolation from your peers at this time, but wondered how you dealt with it? This is a great subject for parents to learn from you. All the best, Michelle Online…
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Hi Mel Im also a Online community champion. Joining Steve in his role to support other memebers on the forum. I wqs in receipt of an Allo Sct and had mostly my Mum around. It was a tough journey for her and i think she has been left a little fragile after. I very much echo the point you and Steve have made that a Carers or…
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Hi Meerkat Thankyou for sharing that you asked your Clinician. I have abandoned all small tasks during this heat wave. My pain and fatigue have been profoundly affected. Which I find odd as I expected those things to improve over the summer. Like yourself and Steve not much causes me to break into a sweat.? My Clinciians…
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Hi Steve Ah yes Meerkats Heat Intolerance post. I recall now ? (memory clearly an issue hehe) With temperatures expected to saw again after a possible window of rain and thunder i hope you and everyone else manages to keep safe. I can empathise with the not being able to get warm after the SCT. It took me a while to…
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Hello Cameron Nice to hear from you. I appreciate your input. As a younger person you certainly would experience it differently. I can see that during lock down all our routines changed. I think your right in mentioning skeeo routines being trial and error what works for one may not necessarily work for others. I can…
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Hi Cameron. I can really relate to the fatigue in the early days. I had the discussion with Steve too about fatigue later down the line. Im glad Im now part of a community that understand. I manage by pacing at the moment and actually become well aquainted with the theory i pacing task/activities. I remember the fidget…
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Morning Steve and Cameron. I second what Steve says. Your increase in awareness at school was incredible. Well done! I think it would be great also to hear how you coped as a young person? Have a good day all, Michelle Community online champion
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HI Cameron Lovely to hear from you. It's lovely to read your story and hear that you are doing well. I had my Stem cell transplant in 2019 after 3 and half years of treatment I'm now 18 months post and joined the Online Community Champion team last week. So welcome! It's great to have another new Online Champion on board.…
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Hello Steve Good to hear from you. Yes I would be interested in others experiences too. I have been shielding since the start of March. My team actually advised the week before to stay in more. I have to say having a dog and living ruraly I felt safe walking him still and got my respite from my four walls at the times my…
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Hello Krista I'm a new online Community Champion here along side Steve and others. I'm wondering how your partner is now and where you are both at in this journey? I relate entirely to yours and your fiances long hospital stay. It is challenging especially on both of your mental health and fatigue. I was also in hospital…
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Hello, I'm a new Online Community Champion and was interested by this conversation Steve started some time ago. I'm wondering how others are feeling with the 1st August approaching Racael and Steve ? My self I'm eager to get back to networks that I find supportive but with family and friend's gatherings increasing I find…
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Hello, I'm a Community Champion here on the forum. Joining the likes of Steve supporting those who have been through a stem cell transplant and their families. I had my Allo-SCT in 2019 and when I saw this discussion I had to read it. Your experiences Chris is not uncommon. In fact the recovery after treatment and SCT is…