Morning All!
Blood Cancer UK is looking to write a blog and would like to hear from you…
Do you have children and are shielding, what was is like for you to explain to your children why you were having to shield?
We really appreciate you sharing your experiences and getting a better understanding of what this must have been like for you during this very difficult and challenging times.
Thank You!
I think when I had to tell our child (a boy of 46yrs old) I had to shield and why we were all expecting this, I think we were also expecting to not have physical contact during the pandemic as he works at a very multi cultural University with students travelling all over the world. I felt sad at that point but had no conception of my ongoing pandemic heightened emotions or the length of time I would not be able to see him for. This came to a head when my husband took some papers round to our son’s house, my husband was only gone about 15 mins, but I felt really isolated and really tearful at that time. In a weird way I think it has brought us closer together and in virtual contact more, but nothing is like physical and real visual contact. I await.
This is such an interesting topic and close to my heart. I have two daughters, 14 and 11. I found this really difficult as it really heightened the seriousness of it all, for me and them! It also meant I had to go into a little more detail about my lymphoma. This wasn’t necessarily a bad thing. I’ve always wanted to tell them a little more and I suppose this stopped me thinking too much about it. My youngest listened, took it in and then went upstairs. My oldest said she understood what I had said and seemed ok. I think it showed more in the weeks to follow and the way they behaved. They didn’t want to go out or go near anyone. I left this for a few weeks, encouraging them to go out for a walk. I think it was about week 6 when they went out with their dad and that seem to break the cycle. This week has been difficult be because my youngest is in year 6 and would’ve loved to go back to school. She understands why she can’t but that’s really hard for her and I completely get that. My oldest daughter is now questioning what happens when she is expected to go back and said that she can’t if I’m still at risk. I completely understand what she is saying but how long can I keep her off? I think guidance around managing children with parents that are shielding hasn’t been great. I hope it improves because if it doesn’t I don’t know if I’d have the confidence to send them back to school. What a huge pressure on a young persons shoulders to think that they might be the one who causes you to become poorly. That’s heartbreaking for me.
My kids are used to me going in and out of hospital for years now. Six times so far. One time I was late home from some appointment or other a few months back and one kid rang me up and asked me “oh so are you back in hospital then dad?” much like as though he was asking if I was on a business meeting after work I had forgotten to tell him about. It became normal. In fact most of my kids were pushing me to more effectively protect myself even before the shielding announcement came out. The youngest is 13 so I guess even he is well aware of things. Suddenly a generation of children are as aware of death as my lot already were of cancer. I used to have to remind them not to make jokes and talk about cancer lightly with other people as not everyone is as used to it as they are. But the same child without sounding particularly distraught said to me the other day “Dad we do want you to come home. But we don’t want you to come back and then die.” He had done the maths. And as I say they had all figured out I was safest to move out before I did. They were actually angry with me for a few days for dragging my heals and trying to make shielding work when some of them are key workers and food bank volunteers by locking myself up in my bedroom as though it was a rabbit hutch (hence the picture of me poking my head out the window in my profile!), making my wife sleep downstairs, and isolating myself from the rest of them totally. But even walking to the toilet felt risky. And so we did the maths and I moved out. This is a huge sacrifice and it costs us as a family. But not as much as if this time when I was admitted into hospital I didn’t come back. Sorry if that sounds blunt but that is what we are talking about. I am trading (as you do when you take chemo) a few months of discomfort for the rest of my life which I fully plan on lasting for decades despite the blood cancer.
Wow @Nichola75, thanks so much for your wonderful, really helpful post, you show the dilemmas so well of your family and relationships. Take so much care and sty safe.
Hi @Adrian, you show the honesty your children can have with you so well, great to hear. You also show the family sacrifices you have made for the short term although perhaps it does not feel like being in the short term right now. Take care and stay safe, I have this image of you sitting on your single bed swinging your legs. Did you know Radio 4 has a few days of 15 minute ‘Just William’s’ at midday this week and available on catch up.
It wasn’t at all difficult, as they’ve known about my CLL for years. Besides, I’m coming on 69, so blend in with other generic frailties!
b
Hi, Don’t forget 70 is the new 50, I was lucky enough to have a brilliant 70th just before lockdown. I was also diagnosed a few years back but somehow that has meant that others do not see me as a vulnerable person. Stay safe and how have you been whilst shielding?
As I was in hospital when everything kicked off my children were in lockdown by the time I emerged. I am shielding for post treatment reasons (although these are not on the guidelines, but my GP thinks it is wise), but as my SIL works for NHS England and is doing a M. Res in public health he has discussed with other members of the family. My two older grandchildren (8&6) were concerned enough that I suddenly needed an operation, and then shielding on top…we made it a priority for them to speak on Zoom so they could see I was ok.
@Adrian my family have a warped sense of humour, and it really helped us through. Looking back to when I was being treated I remember more of the fun we had than anything else (Elder son laughing to his dad, “Hey, mum thinks she can’t cook Sunday breakfast because she has cancer!”…but he still took over 
)
@Nichola75, it is difficult for those who have only had to cope with lockdown to appreciate what shielding entails, in fact I suspect most do not know that there is a group shielding or why. They probably just think of the vulnerable group as the elderly. I agree that there needs to be more publicity and information around shielding, and why everyone has a responsibility to keep to social distancing rules.
@BobK99 @Erica stay safe, stay well, and everyone, make sure you treat yourselves and families…chocolate, a film, a good book, a phone call.
PS I am loving the old films on Talking Pictures (when they have subtitles) and was drawn back to my childhood when I watched The Five Pennies this week…Satchmo and Danny Kaye
Hi everyone,
thank you all so much to everyone who has shared their experience so far, it has honestly been so eye opening for us all to read through. Please do keep sharing!
Thank you so much again everyone and we hope you are all okay.
I feel exactly the same, daughters in year 6 and Year 1. I can handle the isolation, but I hate the fact that they have to miss out on school and the upcoming benefits of lockdown release. I will send them to see family, especially Nanna, very socially distanced, and it may be they have to go camping with dad and without me later in the summer. They don’t like the idea of leaving me here, but, as mums, we want them to have the freedoms we can’t. Thinking of you, Nichola. X
Afternoon Nichola, welcome to our online community! Hope you are well. Thank you so much for posting and sharing your experience with us. It must be so difficult for you as mother that your daughters are having to miss out on school and the benefits of lockdown release. It looks like you have thought about a few options which may go a little way in giving your family a bit of freedom as you don’t want them to miss out on anything and understandably so. Nichola, please always remember we are only a phone call or email away if you ever need support or want to talk to someone. Our support line 0808 2080 888 Monday-Friday 10am-7pm and on weekends between 10am-1pm or you can also reach us via support@bloodcancer.org.uk
Best Wishes
Bav
It’s hard isn’t it. I hate the impact and worry it causes for others. Sounds like you have a few things planned as well try and get them out. It’s so important isn’t it. That’s all we can do. Your daughters and husband sound great as well! Thinking of you lots too xxx
It’s hard because there doesn’t seem to be an end to it all at the moment. That’s hard for children to grasp. We will just keep talking to them, taking small steps and
making plans for when this is all over. Thanks For your support xxx
How are you feeling now? Technology has been a life saver for children hasn’t it! The contact is just as important for them as it is for us x
Hi @Alibick a great big welcome and you have already shown the benefit of this forum. Yes, so many of you are grappling with emotional and practical dilemmas with children. It must also be so difficult to also get a little time just for you, but it is so important. Take care and keep posting how you are getting on, we are all supporting each other extra specially at the moment.
I’m fine thanks. Probably more used to this having gone through similar before, and every couple of years new health challenges come. It is easier in some ways, as there is just myself and hubby at home. At first I was anxious just in case G brought something home after shopping, but then, as Freddie Mercury sang, Who wants to live forever? I could just as easily succumb to another cancer, a heart attack or pneumonia. At least I don’t have the worry of deciding what is best for young children. Take care xx
There was an informative piece on BBC this morning with someone talking about shielding ( and emphasising the difference to lockdown) and the challenges that poses, and also how those that are shielding need more information. They also voiced concerns that people ignoring social distancing are putting us at risk of needing to shield longer. My youngest lives in an apartment in Manchester, has been working from home, and is in walking distance of a small square which some of the locals ( mainly professional single people)had been using to get a change of scene. Last weekend it was full of people from outside the area, and people openly dealing drugs. He now is restricted to just shopping
I’m glad you are ok - this brings challenges for us all doesn’t it. Lots of love and take care of yourself! x
I missed that! Will See if I can find it online