Coronavirus: self isolation and practical tips

PS: I’ve watched a number of videos (perhaps mentioned hereabouts - I forget) about dealing with Covid-19 uncertainties/anxieties/fears, and the main lesson I learnt was to avoid a constant drip-feed of rolling news. (Long before the present pandemic I wrote about rolling news here.)

I limit myself to one lot of reliable news a day, and any links I see on social media I resist the temptation to click.

This policy means that BBC Radios 2,3,4, and 5, and Classic FM are all pretty risky listening; and Radio4 Extra is often playing repeats of repeats of repeats (especially their fillers - coming up to the half hour/hour ). But it’s the only safe listening on the radio.

b

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Hi @BobK99, Good philosophy. I listen to my pre recorded music on my Walkman, the time flies by, 1 brilliant song after another on shuffle. Oh, and Just William this week, just after midday on Radio 4 and on catch up.

hi @BobK99 thank you so much for sharing and such interesting points made too!
As you say, I can only imagine how much setting boundaries can help in a situation like this.

Keep them coming everyone :slight_smile:

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I think it is good to have some routine and something to do every day. For example on Mondays I have a WhatsApp with some ex colleagues. On Tuesdays I clean one half of the house (we live in a bungalow so fairly easy) and the second half on Wednesdays. On Tuesday I also have a Skype Spanish lesson and do Zumba via Zoom in the evening. On Wednesdays apart from cleaning the house I wash the towels and all the cleaning cloths. Thursday I have a quiet day but do Zumba in the evening. On Friday we have a chat and play games with my grandson via Skype. We do things like hangman, who am I with twenty questions etc. I also have tai chi via Zoom.

At the weekend I don’t have so much planned but we always do the Observer crossword after lunch on a Sunday.

As I mentioned earlier I have a weekly Spanish lesson but I spend at least and hour each day improving my Spanish. Learning something new is a great way to spend the time, it could be a musical instrument, or one of the many free on line courses. I am a great fan of Future Learn who have a wide range of courses and I even did one on Covid!

The other thing is make sure you talk to someone each day. So apart from my lovely husband I make sure I ring a friend or family member each day.

I also try to make some new dishes for dinner. We can’t go for a meal but it is nice to vary the diet. Again I like both Delia on Line and BBC recipes. I try to plan ahead a little because as I only have a weekly on line shop I need to ensure I have all the ingredients.

So my advice would be stay as active as your health allows, keep in touch with friends and family and speak to someone outside your household every day, try to learn something new even if it is only one new recipe each week.

Don’t be afraid of asking for help. My friend got me flour which was never available on my on line shop so have been able to continue with home baking. What you need may be completely different but I have found friends only too happy to help.

Take care everyone and this period will end.

Joan

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Thanks Joan for your routine. How are you coping emotionally during shielding, my motions are all over the place.

The lack of social contact is the big thing for me. I do have online meetings with colleagues at work but they’re probably not people I would socialise with under normal circumstances. I make sure that I sign up for interactive events online so that I feel some sort of companionship and a group of friends and myself have a regular Friday evening Zoom get together.

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Oh, Franko, I do not think I realised my need for social contact and interaction before shielding. As you I go to zoom, what’s app and Microsoft Team meetings and whilst it is great to actually see people it is just not the same as being with them. I keep in touch with people on the phone etc. and it was interesting that quite a few of us had a low emotional patch around a week ago. My emotions are definitely heightened, how have you felt emotionally?

Not had a good week personally. I usually thrive on going out for meals, cinema, theatre and heading to the coast. I also do a lot of travel. During 2018 I couldn’t really do much as I was in hospital a lot and chemo for 6 months. I did do some staycation trips in the autumn though which were quite fun once I’d learned to walk again. I originally thought 2019 was going to be my post treatment year as my chemo hospital didn’t give me correct information about what was waiting post chemo So on January 1st 2019 I made loads of plans and booked myself into loads of things and then I got an appointment to discuss SCT and was shocked to find out what was heading my way. I did however adapt most of my plans and some more besides around the intense period of harvest and transplant and ended up having quite a nice year for the bits I spent out of hospital. Most people commented on how I was coping with it all. 2020 though was meant to be my treatment free year and I had 6 trips booked to make the most of things including my dream trip to New Zealand, Vanuatu, Fiji and Tuvalu. It had taken me 4 attempts to get this trip together as something always went wrong eg attack of gout, cancer and it was finally due to go ahead next Saturday. But this week I’ve been doing all of my trip cancelling. I have no idea if I’ll get any of the money back as no one seems keen to hand it over but that’s almost secondary to not being able to go and being stuck in the house on top of everything. From my dream year, it’s turned into a nightmare year. I know that’s small fry compared to people dying and there are people who have had a much worse time than me. I might bounce back next year and rebook my trips but I can’t count on it as typically Myeloma remission periods last 2 years and I’ve had one of mine now. Also pretty all of the voluntary stuff I was doing for the cancer charities has also been put on hold as they aren’t in the position to do their usual stuff. It was important for me to do these things to help me make sense of what happened to me and to move on. I’ve recently made a will to sort my affairs out in case I’m not in a position to do so later and have starting putting things aside along with handwritten notes to friends to give out if and when I lose my battle with Myeloma. Hopefully not for a few years but I feel I should be prepared and organised. I’m trying to keep as busy as possible to make things as positive as possible but I’ve written off 2020 and hoping it’s possible for a better year again. I’m generally an optimistic person which is why I get on with things and keep in contact with people but even events I usually watch getting cancelled gets me down. Last Year I watched Wimbledon in my transplant quarantine room and really missed Eurovision this year as I used to go to the contest live and was in the UK press delegation for 8 years. Good to hear how everyone on here copes though and nice to speak to you all.

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@Franko, none of the things you have mentioned in your post is petty and I cannot imagine how you must be feeling. Hopes, expectations, plans, dreams etc. are all so important and suddenly it feels as if they, and everyday pleasures, have been taken away from us. Also social interaction on whatever level. Don’t forget that 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 support@bloodcancer.org.uk and we, who also really understand are all here, during shielding I have realised sometimes just writing how I am feeling can really help me as well. We will all support each other through these times,. Stay safe and keep posting.

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I have had the odd day where I felt a bit stir crazy. However the good weather and with a garden have been able to get outside. Also find the exercise lifts me emotionally too. Also fortunate that have close family and friends and speak to them. Being able to see and talk to the grandchildren via Skype is good too.

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@Franko I hope you are okay Franko? As Erica put so eloquently, your worries and feelings are just as valid and important as anybody’s - no what they maybe. And we always appreciate you being so open and honest on here. And you said it Erica! the support line is here you and the rest of our wonderful forum family if you ever need to talk :+1:

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Hi Franco Your post really moved me. I understand exactly how you feel. After having multiple relapses of Lymphoma, I have ruined loads of plans - If it’s not the cancer, it’s been some complication of it, or the treatment. In fact, I’ve come to the conclusion that God laughs in the face of my plans. It is my Silver Wedding Anniversary soon, and I’d booked to go to Hong Kong and Vietnam (Imagine that now!). This is the first big occasion for many years that I felt relatively well, and able to make a big trip. Alas, it is not to be. Pretty annoying though, isn’t it? So I completely get that all your wonderful plans are no longer, but you will make new ones.
I also made a will and organised my funeral. I emailed all the family a copy of my wishes, so there is no arguing, and no doubt, of what I want. If I am going to miss all my celebrations, I am going to have a bloody good send off!
It really does you good to have a little moan and wallow on here, because if you don’t feel sorry for yourself now and again, who else will?
I hope you are feeling a little better today and I wish you all the best

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Hi @Lulu I hope you are well? Thank you so much for sharing! And thank you also for your really supportive message to Franko.

I’m so sorry that you didn’t get to go on your trips this time, but hopefully there will be many opportunities when this is all over. It sounds like you have been really organised, as you say, with things like sorting our your Will.

Thank you so much again, and wishing you a very happy Silver Wedding Anniversary in advance!! :smiley:

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Thank you to everyone for their supportive messages. I’m ok really just got a little down at having to cancel things I’d been looking forward. I’m allowed a wobble once every 10 weeks or so :wink: @Lulu I really feel for you. That sounds like an amazing trip. I’m almost tempted to ask if I can come too when you get to do it :slight_smile: We will get our chance. If nothing else the last couple of years have taught me that we group of people have a special kind of patience :slight_smile: Hope everyone is well and it’s really great to talk to people on here who get how you feel.

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@Lulu and @Franko gosh it is so understandable to be so disappointed about not being able to go on your various amazing trips, or be involved in the events you usually really enjoy, especially after all you have been through. It sounds incredibly difficult. I have everything crossed that you will still get the chance to go on these amazing adventures! :slight_smile:

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My biggest issue at the moment is that it’s a year tomorrow since I had confirmation of my ET when I went for a review in London. My life stopped in March last year when the symptoms started and I had two wait about 10 weeks to get a diagnosis. I couldn’t walk, breathe well or eat much as was so full of fluid. 2019 was tough and I do remember New Years Eve and cheering the New Year in as a chance to move on and erase all the bad memories. I saw this year as a new start and yet here I am in June shielding, stuck at home and not sure when things will become ‘normal’ and what will ‘normal’ be like for us. It’s not going to just be like turning a tap off. It’s a tough time for us but really glad the Blood Cancer team are fighting to get answers for us.

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Gosh, @Lou, you have had a year haven’t you. What really resounded with me were your words ’ not sure when things will become ‘normal’ and what will ‘normal’ be like for us.’ So true, so true and also how glad we all are that the Blood Cancer team are fighting to get answers for us. How are you coping and feeling at the moment?

Flat today. My bloods are all over the place at the moment so having weekly testing. Nurse needed two attempts to get blood out yesterday - I have spider veins and needle can go in and literally nothing comes out then the blood pours out as the needle is removed!! I find being on Warfarin a pain as no-one can answer why the INR figure jumps around so much. It’s quite soul-destroying, but at least everything else is ok and biopsy results were as expected. There are positives. Staying positive is the one thing I can do. So today is all about baking.

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Lou, it sounds as if you are having a tough time and you say about keeping positive but perhaps that is easier said than done sometimes, especially at this time of semi lockdown for some. I can also feel very isolated in a family unit. We are here if you need us and the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday or via email at support@bloodcancer.org.uk are also there. However baking sounds therapeutic and yummy.

Hi @Lou, its so reassuring to know that despite your blood tests being all over the place there are some positives which you are holding onto. Please feel free to contact our support line if you would like to talk to someone about how you are feeling. Enjoy baking and have a lovely weekend!

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