Shielding

Hello Greg. I’m so sorry to hear you are struggling with the shielding. My hubby is beginning to ask every day if I think he could maybe get out on his mobility scooter (he’s not doing well on the walking front just now) but I have to say no each time. I walk the dog twice daily but due to her age and my disability it’s only a matter of yards. The biggest issue for my hubby is missing being with our Great niece and great  nephews but he’s enjoying the face time contact. It would be good if I could just take him for a drive to see other than our four walls. Like you we had things to aim for but now it seems as if all hope has gone and as his wife I now feel much more like a carer than a wife as I try to keep his spirits up. He has done a sponsored walk of 200 lengths of our patio over four weeks and he’s raised almost three hundred pounds for the hospice but he has now declared himself to be exhausted spelt with a capital K!!! He is still reading and practicing Spanish just in case bless him. We have an outing planned for the 27th May to see the haematologist and for him to have his Zometa so that is something to look forward to although now the cafe is closed and the machines empty we can’t even have a coffee out. Oh dear what a pickle. Greg dear you  are always so supportive and helpful on this page so do remember many of us think highly of you and are sending you and your family love, joy and virtual hugs. Xxx

Hi June,

Many thanks for getting back to me. I coped better yesterday, I think distraction is definitely the way forward and not over-thinking things. I am sorry to read how you and your husband have been getting on. Myeloma can be difficult at the best of times, but adding the shielding in as well makes things really tough. Well done to your husband though, what a great spirit to carry on regardless, I really like his attitude, and maybe he can think of another challenge once he has rested a bit? You’re right to be thinking about dates to look forward to, and maybe we will see some positive news about this virus soon that enables us to get back to what we enjoy most about life. Here’s hoping anyway!

Thanks for replying June, and sorry if it was troubling to read about me feeling a bit wobbly. What you wrote about me was very kind, and it was a real boost, so thank you very much for being so supportive and helpful yourself.

Greg

Oh Greg you are welcome to any help or support I can give. You gave us such encouragement from day one when I joined this site and whilst I do visit  the site I never feel I’d be much help to anyone. Today my hubby has been on a day where he didn’t want to eat much so it’s been a snacking sort of day. He’s also been dodging the clouds by moving between the garden and conservatory but he’s enjoyed the day so result! Take care my dear and you know where I am if you need a friend.

June x

Thanks so much June, I’m glad you made the best of the day yesterday. Take care yourself. It’s great that we have a site like this where we can lean on each other when needed. And you definitely can and do help June, just by being there is sometimes all the help someone needs.

Greg

I was lucky enough to have final post SCT inoculations about a week after being advised to self isolate. This included tetanus, so for the first time in two years I felt well enough to garden, and the wilderness sure needs it!  So far most of the gardening has been of the slash and burn variety, easy to see the progress. I have never enjoyed gardening so much. Unfortunately it also proved easy to overdo it and I now have a recurrence of ? sciatica, which has involved another hospital referral in light of the myeloma, just in case.

My neighbours and close friends have school aged children, and we were talking about return to school over the fence a few days ago.  My friend has asthma and both her father and father in law have cancer, and she too is extremely concerned about the children returning to school in the immediate months ahead.  Another neighbour is a teacher who expressed concern about whether his school layout would permit any real degree of social isolation (in a secondary school), and is that remotely feasible in a primary school or nursery??  I suspect that many parents have no intention of their children returning to school at the moment, whatever the government decide.  It would perhaps make more sense to ensure all children have access to laptops and create national lesson plans for each age group which are then monitored and supported by the teachers, who could then themselves be at home, without any children being in the classroom except in exceptional circumstances. Some children are home schooled throughout their education, and cope. School is not a happy place for all children all the time, so I'd try to keep children at home until it is safe without social distancing.  Economics clearly also come into it though.

I think that all myeloma patients who have school aged children Greg will be sharing your concern, along with all those who are being shielded for whatever reason.  Hopefully the numbers will add up to sufficient to be noted as an issue to be resolved as we deal with the complexity of coronavirus. In the meantime enjoy family time, and don't worry about the mess the children are creating, they'll also be creating memories of family time that will last their lifetimes.  Not all worthwhile learning needs school!

Hi Greg and community,

I live in Malta. We’ve got similar concept as shielding. All vulnerable people in Malta have been told to remain indoors as much as possible and avoiding contact with others so deliveries are made to the front door and payments made online. Vulnerable people have been identified as over 65 years of age and anyone at high risk of complications due to underlying chronic illness - all these people including the elderly have received a letter at home from health department. I’m one such person. Outpatient appointments are cancelled including zometa. I do get blood test done every 4 weeks and taking my childhood vaccines post transplant.  I’m working from home, 6hrs daily. All my colleagues are working from home too so at least I do not feel any different in that regard. I do go out to my in-law’s fields with my husband of an afternoon during the week when no one else is there to get some air and enjoy the beautiful weather. I’m also going walking/jogging in the countryside and aim at doing my first 10km race when all this covid is over.

Im on revlamid maintenance chemo which has a tendency to suppress immunity. Blood test shows white count is on low end and was told that if it dips lower I’ll need to take G-CSF to boost them. However I am considering stopping the maintenance in that case to allow my body to recover white count naturally while following a healthy balanced diet, exercise routine and a more mindful approach to life.

I (unfortunately) do not have kids and though I’m 34 I am unlikely to be able to have a family now since I’m post menopausal following melphalan. On the bright side I’ve found time to complete an online course on mindfulness by MBCT. It’s a 6-8 week course and It has already improved my wellbeing. I was told that it’s being introduced into the public health domain in the UK. Here in Malta it’s a little slower to be picked up. I would highly recommend everyone to do it if you could find the time. 

Im really looking forward to the end of covid to get back to my routine while also hoping that as a nation we’ll adopt some things we’ve learnt from this experience. I understand that I can only do my bit so in my enthusiasm to returning to normal I have prepared a schedule of how I’d like to do things once things are back to normal and I’m easing into that pattern of sleep, wake and in generally preparing myself for normality from now so it does not come as a shock. In your case I think it would be good to work on preparing as a family...so maybe trying to do schoolwork during school hours, lunch/dinner as you would have done previously with changes to address things you’d like improved. Much easier said than done but worth giving it a thought. 

I would recommend taking a breather once daily and listing 5-10 things you are truely grateful for - must be different things each time. I found it helps...a practice adopted from the mindfulness course I did recently.

If there’s any way you can think of that we can be of better support to one another do let us know. 

Not sure what it's like in the UK in terms of schooling at the moment. Here in Malta classes at many schools (secondary, sixth form and university) have continued remotely. It has been quite the challenge for teachers to go online and have classes in such a way. My mum is in her late 60s but continued teaching as it is her passion but she has now found it very difficult to manage given that she is not very tech savvy. 

Just thinking out loud...In the event that schools re-open and students requested to go back while no injection against COVID available would you consider sending a letter to the school to ask if your children could attend classes via online platforms like zoom, google meet, skype etc? It would be great if schools could organise this so students living with vulnerable family members can still 'attend' class from home, submit homeworks and join class discussions remotely until a vaccine for COVID is in place. 

Hi, 

im in another group but just noticed your post. I wanted to say that my wife and I who have a child in year 6 , have agreed that when my treatment starts, probably in two to three weeks that should the schools go back while we will have to shielding, that we will request that our child can attend classes via Skype or zoom. 

I can’t see why it would be a problem and hopefully the school will accommodate us during this time.

Thanks everyone, some really great suggestions here and certainly some things to ponder.

One aspect I worry about is the emotional impact on my children from shielding. They miss going for a walk, open spaces, the scenery, as well as seeing their friends and I think they would feel they were missing out if their friends got back to school but they had to stay at home. Also, my daughters do a lot of ballet, if the ballet classes started up again, I don’t know how I would tell them that they couldn’t go. If it were only a temporary measure, then it would be an easier message to give them and something to work towards but at the moment, it doesn’t seem like there is a way out for those on the shielded list, at least not in the short term? We don’t need to make a decision yet, so I think for now I’ll just park it until we absolutely have to make a decision as to what we do as a family.

All the best everyone,

Greg

Greg

I feel that I wanted to thank you for all your contributions to this forum.  You have helped me personally on more than one occasion.  You posted advice to me when I posted about the impact cancer had on my life.  I also found your Blog on ‘If I don’t get hit by a bus’! so insightful.

It is just so cruel that you and others find your and your family catapulted back into isolation with no easy end in sight. .  I can’t begin to imagine how hard that must be.  

Take care