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Jane is a haematology nurse with extensive experience in stem cell and bone marrow...
Hope you are all doing well.
Six weeks in now so I was just wondering how everyone is getting on with shielding? I must admit, I am beginning to find it quite challenging. I have a wife and 3 school-age kids at home and we have all shielded together so far, which has actually been very nice (along with the usual challenges!). However, I am aware it can’t go on forever and they will need to get away from the confines of our house and back to school at some point, which is leaving me in a bit of a panic, if I am honest. Is anyone else in a similar position and what are you planning to do?
Also, the mental aspects are draining. I had been feeling well, back at work practically full-time and experiencing the kind of normality I was craving when I was ill, and so it feels very hard to go back to those periods of isolation following SCT, with all the associated emotional baggage. I think the most challenging aspect I have been grappling with is what is the way out of this crisis for myeloma patients? With all previous treatments, there has always been a goal to work towards, but at the moment, I can’t see what the goal is here? It doesn’t bear thinking out really (and I try not to!) but I just wish the government would properly think through what this all means for us. The language coming out of their daily briefings drive me mad. I know I should switch it off and ignore it, but I want to be responsible, for myself and my family. Staying at home permanently is not a nice notion and so I don’t see why they couldn’t introduce measures such as a “shielding hour” or something similar where only people on the shielded list are allowed out of their homes and everyone else is told to stay in? I get angry and despondent at times, and whilst I’ve learned the techniques to get over those temporary states, I would much rather not have to encounter them in the first place!
I was just wondering how other myeloma patients were getting on and how you were finding it all? I hope you are all doing as well as can be.
All the best
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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
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.
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.
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.
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.
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,
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.
I have a 3 year old and an 8 year old. I had my ASCT last year, went back to work in June, and this year everything seemed to have gone back to normal.
Like you, this pandemic has hit me very hard emotionally. When the schools closed I isolated in the house away from the kids and wife for 2 weeks. Then we went into shielding together.
i have been working from home and trying to keep the schooling going too, and have found myself working crazy hours to try to keep everything together.
I have if anything found this more emotionally difficult than the myeloma treatment. With the treatment there was always a defined goal, a next step, a clear path with multiple options along the way. I simply had to do what the doctors and nurses told me to, and thank goodness it worked and I went into remission.
With the virus and shielding there is no clear path, there is no one telling me what path I can take to make things better. The timeline for when I can get out of this is hidden from me, and I have no feeling of control at all. I felt the need to phone a counsellor for the first time since my diagnosis.
My wife got sent to A&E with suspected appendicitis about 10 days ago. This put us into a really difficult position as it was St Thomas which is a CV19 hospital. I had to pack up the car with the kids and head down to my parents’ house and go into shielding with them. They both have conditions that make them high risk too.
This has turned out to be a huge blessing in disguise as they have a garden and live in the countryside. The kids now have space to run around and get fresh air. I am going to head back to London to collect my wife as soon as it has been 14 days beyond her hospital visit.
I simply don’t know what we will do when the schools go back. One thing that has given me a bit of a boost was a myeloma and coronavirus talk I saw the other day that hinted that perhaps myeloma patients are actually at lower risk of entering the dangerous inflammatory phase of the disease that so badly affects the lungs.
There is also a trial in Spain that is looking at whether lenalidomide might actually be a treatment for Covid19! I am on Len maintenance so this is very interesting! It might ironically turn out that we are lower risk than the general population! I am keeping my fingers crossed that proper data may allow us to come out of shielding before the new school year starts in the autumn.
Hi R / Fogmister,
Great to hear from you again, although I wish it was in better circumstances. I’m sorry to read that you’ve found the current situation emotionally difficult and I hope speaking to the counselor helped? I honestly don’t think the government/the medical advisors have thought the shielding guidance through, especially for those of us on the list for a permanent reason. The likelihood is that this virus will be around for a very long time and surely they are not expecting individuals to live permanently in the way the shielding guidance dictates? I have found it particularly hard because like yourself, I have been well now for over 3 years so this has felt like a big step back with nothing happening to me as an individual which helps me rationalize why it is happening - I feel a lot of anger, frustration and injustice - it is almost like I am in prison for a crime I didn’t commit!
My children’s school is advocating a 1 June restart date and have also informed that if we don’t send our children to school, they won’t send work home for them. My daughter is in Year 6 and I know it is an important transitional year for her - I worry about the effects of not allowing her to go back. My wife’s school is also saying she needs to go back (she is a teacher). I am not sure how this is going to work in practice. We may have to physically split the house in two, with my daughter and wife on one side and myself, my son and my other daughter on the other side. This will then mean I have to stop working to look after them. So it doesn’t make economic sense, never mind health sense!
It is interesting to read that they may be thinking of relaxing the guidance for myeloma patients. On a personal level, that would be nice. But I’m not sure I agree with the shielding guidance full stop. It doesn’t seem ethical to me to ask people to do what the guidance suggests. I understand that I am currently assessed as being very high risk and I am absolutely not going to be reckless in terms of exposing myself to the virus, I just feel we should be free to make our own choices without having the pressure put onto us that it it is our fault if we get poorly.
Anyway, I am glad that you are finding it a bit easier in the countryside - I am in a semi-rural location and am incredibly thankful that I have access to a garden. I hope your wife is doing ok and that you can successfully get her to your parents in the coming days.
I am better understanding your concern re schools and shielding especially given that some schools are not offering remote classes/homeworks etc.
I did the SCT back in October 2019 and now have blood tests once a month. Last blood test showed white count of 3.0 and so I understand that I need to remain shielded and take all measures instructed. I am on maintenance chemo (Revlamid 10mg) which is known to suppress immune system. However, I would have assumed though, that once my blood test return to normality such measures of shielding would not apply and I would not form part of the vulnerable population. From your posts I believe this is not the case since some have been in remission for a few years and thank God still are. Do you still have routine blood tests? Are you requested to shield because of some poor blood test results or simply because you've got the myeloma condition?
Unfortunately all myeloma patients, regardless of stage, treatment, length of time in remission, etc are classed as “clinically extremely vulnerable” and so per the UK government guidance should be shielding. I am well, my bloods are good and I only have check-ups every 6 months but this is not currently making any difference to the risk assessment. I think it is because myeloma is a cancer of the antibodies themselves and as it is currently classed as incurable, the medical teams therefore think a myeloma patient is permanently at high risk due to their weakened ability to fight off the virus. I don’t have sufficient medical knowledge to question that but it seems like quite a dark and depressing message, hence why I am trying to see if the guidance really should be as it is stated. Let’s hope the medical teams can do some more analysis and give us all a little bit more hope on this. I’m hoping more guidance will come out shortly.
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