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chelle_16

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chelle_16
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  • Hi Jpk My name is Michelle, a SCT recipient and one of the online community champions supporting patients and families going through cancer and SCT treatment journeys. Firstly, i wanted to acknolwedge the difficult time you are having and reas…
    in Jpk Comment by chelle_16 October 7
  • Hello Lucy It is good to hear the dialogue is still in process. Your future clinic appointment will be a good opportunity to review things again. There is no one test that diagnosis skin gvhd, i don't think. There are blood levels that can meassu…
  • Hello Lucyh1234 I am Michelle one of the Online Community Champions and a fellow SCT recipient. Sorry to hear of your skin challenges this last 2 months. Skin GvHD can look different from patient to patient. Some more severe than others. It is…
  • Hello Clare I know those especially going through treatment have understandable concerns especially around the effectiveness of the Vaccinations in those immuno surpressed. Myself, I am carrying on as I have been. Following strict measures wit…
  • Hello Jenny My name is Michelle and I am one of the online community champions along side some other wonderful individuals and a SCT recipient. You are still very early in your recovery but sounds like you have been making huge strides in rela…
  • Hi Lau lau Thank you. I was shocked to be honest. Yes i had pfizer. The report didn't go in to too much detail. It did tell me that i have IgG antibodies to the spike protein SARS-Cov-2. The test detects antibodies generated from exposure to t…
  • Hi all. Hope we are doing well. How are we feeling about the relaxation on the 19th july? Some of us maybe feeling apprehensive about these final steps, especially if you are on treatment. I will be continuing to social distance and wear masks…
  • Hello Mel Thank you for sharing how things have been for you and your husband of late. Empathising with your husbands continued chronic fatigue, breathlessness, dry skin, balance and sight challenges, these things can certainly make the spell of …
  • Hello Laura This sounds really positive. The steps you are taking are awesome. Trying to find your new normal in a changing world. Sorry to hear about your experience at the gardens. It is understandable that you had a moment. However it seems…
    in Good news Comment by chelle_16 June 30
  • Hello Laura. Congratulations This is fantastic. You have come so far. Michelle
    in Good news Comment by chelle_16 June 20
  • Hi laura Thisnis great to hear. Thanks for sharing it here with us. So i have just opted to be out the sun so your discovery will come in handy. 😉 Best, Michelle
  • Hi Mel and Hannah Although not a partner or carer, as a SCT recipient and online community champion i hope this fantastic new space gives you the space you so rightly stated can help with seeking supporting with the degree of things that can occu…
    in Great! Comment by chelle_16 June 10
  • Hi jess, Picc lines make a huge difference. The constant insertion of cannulas can be overwhelming and daunting for some. It does make your addmission easier and more accessible for medications when and if needed. We are all here to continue t…
    in Relapsed AML Comment by chelle_16 June 3
  • Hi Jess Steve put it well in regards to positive mindset. I found it hard but once i was in my room on the ward, where i was very familiar with the staff and they knew me better than i knew myself at this point. Immediately i began even getting e…
    in Relapsed AML Comment by chelle_16 June 2
  • Hi Jess All your concerns are valid and im sorry it is all field with so much fear for you. In regards to your mouth, ice lollies helped me lots and i know one of the chemos during conditioning therapy, ice lollies are advised. Maintaining goo…
    in Relapsed AML Comment by chelle_16 May 31
  • Hi Jesjesica1 Our bodies are weird yet wonderful things. We can't predict how our body will respond but having the right support and knowledge will help prepare you. Speak to your team (and Anthony Nolan Specialist Nurses) about those side eff…
    in Relapsed AML Comment by chelle_16 May 26
  • Hello Jesjesica1 My name is Michelle and like Steve, an online community champion. I am also a Stem cell recipient. Having had my transplant in 2019. What you describe was similar to my story. Relapsing after 3 months of treatment. I was introdu…
    in Relapsed AML Comment by chelle_16 May 26
  • Hi Laura, Sounds like you are doing you very best to ensure you are safe. I haven't done any anti-body tests but still doing the very minimum, like you have mentioned, quiet places, masks, hand gel and so on. I did form a support bubble wit…
  • Hi Mex. Thats a shame about PIP. Glad you get part ESA. Sorry can't advise re; your role. Hopefuly someone will have some insight. Its a complicated situation for you. Michelle
  • Hello Mex My name is Michelle and I am one of the Online Community Champions here to support patients. I hope your are doing well with the post transplant journey. Sorry to hear of the uncertanty you face. It can't be easy. My situation is a …
  • Hi Laulau1 Glad you didn't feel so rough the second time. I had my second pfizer 3 weeks qgo and was fine. I haven't done antibody test, i know a few people have been. I do however do lateral flows 2 times a week as I am almost back to normal …
  • Hello Steve and all, I had my second vaccine yesterday. Pfizer which generaly speaking i have been fine with however Im run down and recovering from laryngitis so im feeling groggy any way 🙈 A bit of a saw arm but not as bad as the first jab. …
  • Hello Mother AA I don't think we have interacted before, I am Michelle, one of the commumity champions, I started with the team last year. Great to have an update, thankyou for that. I have read through your previous posts and i can see what a…
  • Hi Buffy Welcome to the forum. My name is Michelle, I am one of the community champions here to offer support. I am sorry to hear your brother still has disease present 50 days post transplant. Firstly, I can not advise regarding AML specifica…
  • Hi Laulau1 It is most definately a time of anxiety for many people especially those in the blood cancer/blood disorder communities. Rest assured you are not alone. I welcomed the lockdowns just as a form of distance for my own mental health an…
    in Shielding Comment by chelle_16 April 2
  • Hi mel, Yes medical knowledge and advancements have come on leaps and bounds. As has the knowledge of our medical personnel both at Anyhony Nolan and in hospitals. The body is really a wonderful and surprisingly very resilient yet complex being. …
  • Hi Mel I was a frequent flyer with neutropenic sepsis. Addmitted at least every 6 weeks because it was no longer manageable at home. Although every ones body responds differently to ailments. The team looking after your husband are probabl…
  • Hi Mel. I am so pleased for your husband and you that it all went well. Seems the staff really suplortes you through the day, especially at the end of the day. I can relate to the l-o-n-g day but good to hear there was no immediate problems. …
  • Hi Laulau1 What fab news about your 100% chimerism! What a mile stone. I hear that you feel frustrated with your breathlessness and feeling like it may be a step backwards. To reassure you most of us experience this at any point post SCT. For …
  • Hi Mel I, like Laulau1 had pentamedine by neublizer for 4 years due to lymphoma and Histiocytosis. I had the same experience as Laulau1 sitting in a private room. Inhaling the Pent'neb It can be anxiety provoking for all changes, big or small.…