Hi Malcolm, yes, I believe the Scottish government is approaching things differently. I am in England but have not poked my nose outside our flat yet, The shielding survey sounds a good idea. Take care.
@mrbio I’m so glad to hear you’re doing okay, and hope that the information in our last message was helpful to you. Please do keep reaching out on here for support Malcolm!
@Erica As you say, Erica, there are some differences between the four nations, we will ensure to keep our information updated to let everyone know what is going on in all four countries. Hope you’ve been okay today?
@Adrian To echo Malcolm, we also hope all is okay with you, please do remember the support line is here if there’s anything you’d like to talk through
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@mrbio @Erica @SuBloodcancerUK Thanks for asking if I am OK. Yes I am doing fine in many ways and we are managing to safely do the socially distanced walk thing though I am suffering quite badly still with asthma and hay fever symptoms especially at night despite being on oral steroid. This was started when I had what we are pretty sure was a bacterial chest infection just over two weeks ago which also prompted a further exacerbation of the asthma. Almost ended up in A and E but oral rescue antibiotics and steroid did come to my rescue. Cant’t seem to wean myself off the steroids though at the moment. Am seeing a top asthma and allergy doc remotely on Wednesday so hopefully we can get somewhere. I seem to be getting more and more inflamed the longer time goes on. This has been a gradual process for three years. My immunologist believes this is probably due to my steadily dropping immunoglobulin levels but I can’t start antibody replacement therapy due to lockdown and also a rationing rule (my number isn’t quite low enough yet…). Have been a bit distracted by all that but have been doing a bunch more writing some of which I may just share with you here soon. Steroids do have one advantage: they give me more mental energy. But it makes me worry about what it will be like again when they ultimately have to surely stop. My energy will presumably drop again and I will struggle to motivate myself to do what I love doing: waffling on in written form!
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Hi Adrian, thanks for updating us, please let us know how your remote appointment goes on Wednesday.
Hi,
I hope this is the right thread to ask this on, but i am just looking for a little advice.
My husband had T-type ALL in Dec 2005 aged 20 and got his all clear in Feb 2007 and we have also received the letter to shield which we have been doing since the start of lockdown.
I have read through the thread and can see that there is a small amount of information about people who were diagnosed over 5 years ago, I am presuming that this would include people who haven’t received any treatment in this time. With society slowly trying to get back to normal we are facing new challenges like needing to return to work after furlough and sending our 6 year old back to school. These realities are going to have to happen at some point.
Although i am sure that it is impossible to say, does anyone know if he would still truly be at higher risk of dying of covid-19 than the normal person? Would the treatment that he had (he had chemotherapy, radiotherapy and steroids which gave him necrosis) still have an affect on his body now? He is young and his annual check ups have always been fine.
We are of course going to shield for as long as we are told to, but i just wondered if anyone had any other information that might help cast more light.
Thanks
Charlotte
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Hi Charlotte, a great big welcome to our community forum and you can post wherever you want. The questions you ask are probably best asked of your husbands medical team, as you have outlined we might all have blood cancer, but we are all unique with his age, medical history, symptoms, test results, time since diagnosis/treatment etc. and so they will advise him. The information and advise the medical profession is giving is ever changing as the situation changes, but to me you have all been doing the best thing, better safe than sorry. This forum is also here for you, how has it been and how are you doing?
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Hi Charlotte,
Welcome to the Blood Cancer UK Forum! Thank you so much for getting in touch with us. This is understandably a worrying time for both you and your husband and you’ve done the right thing reaching out for support.
Depending on the type of blood cancer and treatment, it can take from a few months up to a year for the immune system to recover. However, there is the possibility of the immune system still being compromised if a person is in remission, though this can vary depending on multiple factors, such as; the type of blood cancer, the type of treatment and the individual. For that reason we would recommend speaking to your husband’s treating team, including; his consultant and his clinical nurse specialist, to get a better idea of his personal risk level.
You may find this blog we recently published useful, Charlotte:
It talks a little bit more about understanding an individual’s risk when it comes to coronavirus. With coronavirus there are two key risks; the risk of catching coronavirus and the risk of becoming seriously ill if you do get the virus. It is important to think about both things when planning about the future.
At the moment, it’s important that your husband continues to shield until 30th June at least, here is some further information: https://bloodcancer.org.uk/support-for-you/coronavirus-covid-19/looking-after-yourself-staying-home-shielding/. You can also speak to his GP and specialist team about this to ensure your decision is based on the correct clinical information. It’s so important that you feel comfortable and confident with the guidance you’re being asked to follow at this time, so we recommend talking any concerns through with your husband’s healthcare team, so you are fully informed.
Blood cancer UK are continuously monitoring the situation and will update our information if any advice relating to this were to change.
Our webpage suggests ways of supporting yourself through this difficult time: https://bloodcancer.org.uk/support-for-you/coronavirus-covid-19/looking-after-yourself--staying-home-shielding/
I hope this has been helpful to you, Charlotte? It’s so understandable to be feeling concerned about the coronavirus. If you need further clarity on any of the information we provide or want someone to talk it through with, we are only ever a phone call or email. Just as a reminder, our support line can be reached on 0808 2080 888 Monday-Friday 10am-7pm and on weekends between 10am-1pm or you can also reach us via support@bloodcancer.org.uk.
Take care of yourself and very best wishes from the support line team
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Thanks for the replies. His annual appointment has been cancelled and not rescheduled as yet, so it makes speaking to his specialists more difficult. Although that is probably a good sign to be honest.
Thanks for the resources, we have read through them and it has put us as ease a little.
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Hi @charlotte I am glad the Blood Cancer UK resources were useful, please keep letting us know how you are both doing, take care and stay safe.
Hi all,
The government’s latest advice is confusing and ambiguous.
The latest advice goes against scientific advice.
I feel far from reassured by the letter I also received yesterday.
I will continue to shield as I feel I’m still at great risk.
With a reduced immune system I don’t feel any safer than I did at the start of the outbreak.
I do go out to attend the hospital 6 days in every 28 for chemotherapy and the occasional walk round the back streets.
My social distancing will still be 2 metres, I will avoid close contact with everybody.
I get the distinct impression that lives are being put at risk for economic reasons.
A second wave is bound to occur and the NHS will be overwhelmed.
Good luck and best wishes to you all
Anthony
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Hi Anthony, I find it so difficult to know how worried I should be. I think the statistic of 1 in 1,700 chance of catching Covid-19 is something I can understand and I realise it is more dangerous for us ( I also know you can come up with any statistics to prove a case. I remember ‘Yes, Prime Minister’, really classy, so true today, brilliant TV). Have I got too cocooned here in the flat? I think the ‘Novak Djokovic’ tennis tournament says it so well, that is scary to me.
Yes, I received the 4 page NHS letter from ‘Matt’ yesterday. I think you and I are just being sensible. I have face masks but I made one from a checkered tea towel, no words can describe it but I will admit it is a bit lop sided. All I need is one of your special hats and I would look like a bank robbing cowboy. I am planning to go out for sensible walks after 6 July with my beloved Walkman music and socially distancing. We await others thoughts.
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Hi Erica and everyone else. Im new here but have been dropping by to the forum which has proved helpful and informative all the way through this long lockdown. I was diagnosed with a plasmacytoma almost exactly two years ago and then just as I was about to commence radiotherapy a final PET scan revealed two tiny lesions on my clavicle and sternum. This then became a myeloma diagnosis and 6 months of chemo and an auto STC at UCH early last year!
All well and complete response. I have my life back. On no wait a moment here comes coronavirus! I am now completely used to lockdown and have discovered that almost everything can be delivered to my door including groceries, wonderful plants from a local nursery and for everything else there’s good old
Amazon.
I too received my letter yesterday from Matt, and whilst I’m sure he means well where is the evidence please.?
Will continue very cautiously. I feel that the Government are trying to give us back the summer for now but it feels very much that they have their fingers crossed!
Mind you I could really do with a haircut!
Sue
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Hi @Lockdownsue60, I am glad you have posted, although also glad that you have been dropping by the forum. You seem to have got a responsible outlook to this isolation.
I ended up getting the scissors to my hair, but I am not advocating it, well, who is going to see me anyway.
I must say that if it had not been for isolating I would not have got into Zoom, Skype etc, and as for online deliveries I get so excited when deliveries arrive.
How have you coped emotionally though isolation, mine are all over the place?
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Hi all, I’m newish here but have followed discussions on Facebook page. Just one observation from this new shielding guidance; “From 1 August the advice to shield will be paused. From this date, the Government is advising you to adopt **strict social distancing rather than full shielding measures. …but you should take particular care to minimise contact with others outside your household or support bubble. .In practice, this means… you can go to work… as long as the business is COVID-safe…”
I mean this is just so wrong this advice, to adopt strict social distancing and going to work! Most of us don’t work alone but have to have contact with other people… Anyway, rant over. x
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Hi @MoMo, one of the real values of this forum is that you can have a good old rant. Sometimes my husband avoids me if I want to rant.
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@Erica exactly the reason I had my rant over here… my dear hubby just can’t hear it any more.
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Dear Erica and Lockdownsue60,
I’m on chemotherapy this week ( 72nd monthly cycle)
I spoke to the Senior Operational Matron at the clinic today and I asked him what he thought of the Boris statement yesterday.
“ABSOLUTE DISASTER, A DECISION MADE IGNORING SCIENTIFIC ADVICE”
He also said the NHS will be overwhelmed by a surge of many more cases of Covid 19, with many more deaths to follow. How many more people are going to die due to his incompetent leadership!!?
I have to say that I completely agree with him.
It’s a great pity that there is not one member of his cabinet who has the courage to dissent and condemn his handling of this crisis from the start.
Yes men all of them.
Best wishes
Anthony
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Anthony I do understand how you feel and I am for sure concerned about the risk of a second peak or even just localised outbreaks. We are somewhat safer now than we were at the beginning though for two reasons. 1. They know how to treat this better e.g. that steroids help to reduce mortality. 2. The backround incidence in the population is much lower now than it was. Any indiviudal we meet now has on averate a 1 in 1700 chance of having COVID19 whereas at its peak that was 1 in 40. But for sure social distancing and keeping well clear of crowds seems sensible to me for a while to come. This graphic shows pictorially how a wave of infection has swept our nation and at least at the moment is in retreat. I feel sorry for those being asked to think about going back to work but for the rest of us we can definitely continue to have our shopping delivered and we shouldnt feel forced to do anyting we do not feel is safe. Take baby steps seems to be the solution as some of our fear is very much based in a real risk, and of coruse some of our fear is the natural response to being told not to go out at all for so long. Here is the graphic I was talking about: https://www.facebook.com/bloodcanceruncensored/posts/132781688448500 (note this link takes you outside blood cancer UK and does not represent the views of the charity).
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Hi everyone. Well, thanks to the coronavirus deniers I think that 2nd spike will be with us sooner than expected. I am not surprised by reports of raves and street parties, which have been going for a few weeks now, but am amazed that people with families have been flooding the beaches and parks. Surely many of these people have had family or friends affected by coronavirus? I wonder how many are saying they cannot return to work, yet think nothing of sharing a beach with thousands? How much virus could be spread by the litter left?
A relative in Melbourne is affected by a 2nd lockdown, where everyone in several neighbourhoods are being tested. This has not been widely reported here. We are more heavily populated on this tiny island, and do not have as much control over our borders…
If I sound angry, I am, but more than that, I feel sad for the selfishness that is apparent. All lives matter, and society needs to wake up …
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I guess we will find out how risky open air gatherings really are. It is just possible that the answer is not as much as we think. But I do wonder if the cases will indeed start to rise in the next few weeks in which case we presumably will find sheilding gets extended.
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