Since the beginning of this pandemic I have shielded myself, kept wondering why I didn’t get a letter, called my cancer nurse she said I didn’t qualify, called my doctors, receptionist told me I wasnt red flagged so didn’t qualify, been checking with local council was told to call my doc again, so I did, he wasn’t sure said he would call me back, which he did to tell me that I should have had a letter at beginning and one was being sent out to me. Did anyone else have this problem. I have essential thrombocemia as well as diabetes and angina.
Hi, there was some confusion at the beginning and a lot of people with blood cancers didn’t get the letters. There was some confusion about whether some conditions counted as blood cancer. For more information on shielding see the following links: https://bloodcancer.org.uk/support-for-you/coronavirus-covid-19/ , https://bloodcancer.org.uk/news/ , and https://www.gov.uk/government/publications/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19
You may notice that neither diabetes alone nor angina would have qualified you for being on this list but doctors do have discretion to include patients with several diseases on the list and if we consider your essential thrombocytopenia as a blood cancer you would qualify on that basis. Sorry that there has been so much confusion in your case. I am glad that you are now officially in the “shielding club” and even more so that you are currently safely shielding and have been all along. It can be really tough to shield so do reach out for help and support. The blood cancer uk telephone helpline can be really useful for example.
Hi @ladicaz, you and many others have really had a struggle to receive the letter that you are entitled to as a blood cancer patient, some have succeeded but I believe some are still having a problem. The really important thing is that you know you need to shield and have.
I think shielding itself brings up so many emotions, thoughts and practicalities, we are all here to support each other whilst shielding. If you need extra support you can also contact the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at firstname.lastname@example.org How are you doing?
Doing OK, just missing getting out with my husband and grandson who lives with us. We live in a flat, 16 floors up, but we are lucky compared to some who live in flats we have a verandah so I get fresh air. Hope all on this site are keeping safe and well.
Gosh, Carol, a flat 16 floors up must have it’s challenges for you. I am in a ground floor flat but no outside space. I am definitely finding the lack of fresh air and no social interactions apart from virtually challenging. A lot of us seem to have heightened emotions during shielding and a low a week or so back. I got so exited when a parcel Amazon thought was lost turned up and tearful at the least thing. How have you been emotionally? Stay safe and we will all support each other during this period.
Been emotional a couple of times, try hard not to as it upsets rest of family. Living this high has its advantages, thankfully our lifts work reasonably well. We have a great view, love standing just watching world go by. 15907623631283631883653756781405|375x500 hope you can see the photo.
Wow, Carol, what a view, thanks. During the emotional times don’t forget you can contact the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at email@example.com and please do keep posting on the forum what it is like to be you. Sometimes as you say you try hard not to upset the rest of the family, but perhaps you also need some time and space and treats to be you. Take care.
@ladicaz Hi Carol, I hope you are doing okay? This does sound like it has been a difficult time for you. As Erica rightly said, please do remember the support line is always here. I’m so sorry to hear of the impact this has had on you. Has there been any opportunity to talk through with your treatment why they feel you are not at risk?
Hi I had the same experience,I have splenic lymphoma & had asplenectomy also have a long history of pneumonia Sepsis & pleural effusions due to the lymphoma. Eventually recieved a shielding letter on May 1st fortunately I had shielded myself since February.but have to wonder what would have happened if I had not taken the decision myself. The reason given for the shielding letter not being sent was I didn’t fit the criteria .yet people with far less problems were identified I ask myself was blood cancer so low on the list .i have found help on the blood cancer pages thankfully they are fighting our corner.personally I will continue to shield until a vaccine is available.will we be able to have the vaccine is the next question.GOOD LUCK EVERYONE KEEP SAFE ANN
Hi @Thelimes, welcome, yes we are so lucky to have Blood Cancer UK campaigning and giving us reliable, up to date information and support. You certainly did have to wait to get the letter and luckily you realised what you had to do to keep yourself safe, the most important thing. What has it and is it like for you shielding, Ann?
Welcome Thelimes. So glad you got sorted out, xxx
Yes I’ve had issues with the shielding letter too and I believe many others have too , hope you are doing ok
Hi, though i am sorry you too had a problem with the letter at least I am not the only one and a friend who has an auto immune disease also has had problems so the whole shielding letter things seems a very hit and miss. Like you I was hearing that people with far less problems had the letter. So much emphasis was put on this letter when the process behind it was so flawed. For me as I still work (part time) its caused me extra stress and drama having to deal with my employer when I didn’t have this magic letter! Hope you are keeping safe
Hi @Thelimes, a big warm welcome to you! It really sounds like have been through so much, but it’s clear how proactive you’ve been in trying to keep as informed as possible. How have you been doing recently?
I’m new to the forum so please excuse me if my question has been answered a million times already.
With MDS, diabetes and old age I have a win treble in the Vulnerability Stakes Handicap and have been shielding for 15 weeks.
When it is deemed a suitable time to venture out will there be any additional self-protection to the wearer in using a visor and/or a mask, which, I understand, is for the protection of others?
@Doug A very big warm welcome to you! How are you?
And not at all, we always really encourage people to reach out if there’s anything they’re unclear about- no matter how many times it has been asked! I hope this information below will be helpful to you:
Doug, I wasn’t too sure which part of the UK you are based, and there are some variations between the four nations, so I thought it best to include a link to our main webpage here: https://bloodcancer.org.uk/support-for-you/coronavirus-covid-19/looking-after-yourself-staying-home-shielding/ Where the key differences are outlined between the four UK countries in terms of easing of restrictions and the guidance around using face masks.
I hope this is helpful to you? Though saying this Doug, government guidelines can only ever be general and so we would really encourage you to talk this through with a member of your healthcare team, such as your consultant or your clinical nurse specialist/key worker. This is because they are equipped with information around your individual circumstances and medical history and your general state of health, and so can offer you tailored and specific advice around this, in the context of your personal circumstances.
Please do shout if there are any more questions around this or anything else you’d like support with, in the meantime, Doug, a big welcome again we are very happy to have you join us!
Hi Doug, a great big welcome to our community and please do ask anything you want.
I think @SuBloodcancerUK has given you the best answer to your question, I always believe in asking someone on my medical team anything about my particular medical circumstances and I do have to remind them of any other conditions I might have apart from my blood cancer. I also win a treble (the only thing I do win) and I have also been in our flat for about 15 weeks (I am loosing count how long it is now).
You ask the million dollar question for me because I am going to venture out into fresh air, hopefully away from people, this week. I am going to wear a face mask as I believe personally it does give me and others a slight protection (not a medical opinion). Anyway I will obviously be social distancing.
How have you been in isolation and do you have any support?
I would like to add my welcome to the forum as well.
I also have MDS and ventured out for the first time since the lockdown two weeks ago following advice in an updated shielding letter that I received from the NHS that I could go out for exercise once a day. I must admit I found it a bit overwhelming at first having not left home for 90 days. I wear a mask and avoid touching anything while I am out. Generally I have found people to be quite scrupulous about observing the 2m distancing rule so I am feeling more confident about going out. Overall I’m glad to be able to get out for the walks and am feeling the benefit of them.
All the best, Peter
Hello Sue, Erica and Peter,
Thank you for the welcome and the warm words.
Opinion seems varied amongst medics so I have reached my own conclusion (probably wrong) that, as a visor is impenetrable “head-on”, it probably affords slightly more protection to the wearer than the porous mask which is mostly for the benefit of others.
I live in NW England, Sue.
In answer to your questions, Erica, I count myself extremely fortunate as so far I’m asymptomatic of MDS and although I am widowed and live alone, I do not need support as I was lucky enough to get a regular weekly delivery slot with a supermarket. Being obstinate helps,too. In answer to your other question, I have been grounded for 16 weeks having been in Spain when their lockdown began.
I do have a confession to make, though, because a couple of times during the good weather, I sat in the communal gardens of our small block of flats, several feet away from a couple of neighbours whilst we drunk wine and told each other lies.
Hi @Doug no problem at all! and I hope the information above will be helpful to you.
It’s very reassuring to hear you have been able to receive support with shopping, though I hope things have been okay living on your own. Doug, I was so sorry to read that you are widowed, and I wanted to say we’re so sorry for your loss, the support team and I send you all of our well wishes, and are here if you ever wanted support that is more one to one and private.
As you touch on Doug, it can be tricky knowing how best to proceed in terms of which type of face covering is best to use. As a charity, we are still working hard to get a bit more clarity and evidence around this, so that we can keep you all as informed as possible. In the meantime, in addition to the information above, you may also find this link helpful: https://www.gov.uk/government/publications/how-to-wear-and-make-a-cloth-face-covering/how-to-wear-and-make-a-cloth-face-covering it’s a page from the official government website which talks through advice on how to make your own covering.
Hope you continue to get a lot out of talking on this forum @Doug, please do reaching out for support