Hi All, I am feeling really powerless as a very good friend with blood cancer is very poorly (not directly with blood cancer or Coronavirus, thank goodness). She does not live locally, I do not even have her address and I just do not know how to support her, she is so brilliantly supportive of others. I am concerned that if I email her she will feel she has to reply. She needs all her strength to recover from her op and I know she is very concerned about being in hospital with the Coronavirus whizzing around. I know I have the support of people on this forum or the extremely busy support line. I just feel helpless and just needed to get it off my chest. thanks for being there.
In my experience, an ignored email is far better than no email at all. Cast your mind back to when you were poorly - didn’t all those messages, emails and texts cheer you up? We of all people know what it’s like to hardly be able to lift our heads off the pillow, let alone reply to anyone. So, I would definitely send a message, and keep sending them, every few days. This will ensure your friend knows she is being thought of, and that people care. I really hope she gets better soon and I’m sure she will reply when she is up to it. Take care if yourself in these scary times x
Thanks Lulu, that lovely and so true, keep posting as we need to all support each other whilst self isolating and don’t forget the wonderful Bloodwise support line is there if you need them, their details are above. How are you doing, thinking and feeling?
I am a little bit scared of going out to be honest. Although I am no longer on chemo, I have no immunity and do sub cut immunoglobulin infusions once a week. I guess I’m in the “vulnerable” group? I have survived lymphoma six times as well as a subsequent heart attack, and numerous bouts of infections and pneumonia. I also currently have Organising Pneumonia. As we all know, chemotherapy is the gift that keeps on giving! Therefore, I do not want to die of Corona - how ironic would that be? My Dad is 87, so I am keeping away from him, and my daughter is pregnant, so we are not seeing each other either. My husband is self-employed, so is currently not going to receive any government help. Worrying times. However, I know, as a family, that we have been through much worse.
I am glad we have this forum to vent, as “normal” people do not understand
Lulu speaks a lot of sense. When I was ill I wasn’t always able to reply straight away if at all but I always appreciated anyone who took the trouble to text me or post on my Facebook page to keep me in touch with the real world. We could all be in that position going forward. I’m on compulsory work from home as my organisation has closed down. I like many of you will be expecting one of those ominous letters to the 1.5 million. At the moment I’m still doing brief forays to the local shops to grab supplies but I suspect that this will have to stop sometime this week. Virtual contact will then become extremely important for me and for all of you.
Hi Erica, I often text/email friends in times of need and I’m always make it clear that I understand they may not want to talk so they don’t have to reply - it’s just to say I’m thinking about them. People have said the same to me as well and it just takes the pressure of if I don’t want to reply xxx
Frank, and Lulu, Hope you are keeping well. It is all rather confusing for many of us. The government has made it clear that the advice applies to everyone with any form of blood cancer. Obviously we are not all at exactly the same level of risk but they dont want us to have to work out who is and who isn’t. there is no real way of doing that anyway. We can’t measure how well our immune systems work but by definition if you have ever had a blood cancer your immune system won’t be working as well as it should be. So I think it is time to take the advice of the government whether you have had the email letter or text yet or not. Ask family or friends who do NOT live with you or a local volunteer service to get food for you. Some supermarkets are brining in a vulnerable person delivery service (Sainsburys have announced this already, others I am sure will follow). Some local dairies are able to take new orders still and a few online butchers etc may still have space. This is hard for all of us, and as I have a big family at home I am isolating myself in my bedroom. Not leaving except to go to the toilet and sometimes sneaking around a little while they are asleep but even then feel a bit apprehensive. I can imagine that re-entry into the real world is going to be hard for many of us. Suddenly other human beings are seen as potential souces of infection rather than affection. Video calls are a great antidote and we will all be supportive on here.
hi @Lulu goodness, it sounds like you have so much going on, but I’m pleased you felt you could post on here to talk things through. I can only imagine how tough it must not being able to see some of your family members in person. How have you been finding things?
@franko as you say, with everything that is going on, it does feel like virtual contact will become more important. How is everyone finding this adjustment?
@Adrian @Franko, @Lulu, @Nichola75 and @SuBloodcancerUK. I have subscribed to an ecard company which will help whilst I cannot go out for cards. I dread to think what our telephone bill will be as I have contacted a lot of people on my Christmas card list, here and afar, whether they are sick or not. 3 friends I worked with pre 1973 (just aged myself there!!) and I have set up a Watts App group. Interesting times whilst in isolation, I sort of feel a lot closer to people from afar and most of us have health challenges. Any other thoughts?
Sounds like interesting ideas you’ve all got for coping with not getting out. Thanks for tipping me off about the new Sainsburys service as I didn’t like the sound of the official NHS list which was a one size fits all shopping list. I get a text daily from the NHS but no letter so I know I’m on the list and should be staying in. To someone used to travelling a lot and just taking off to the coast whenever I feel like it or going out to a restaurant it feels really tough right now, especially with the sun outside beckoning me. I am working from home four days a week but realistically we’re all scraping around for work and running out fast as we’re a face to face team primarily. Any others working from home? What are your experiences?
Whilst I was undergoing treatment & SCT I had my mobile with me at all times, people would text me & I would gather all my strength to read it. The message would make me smile and made me feel that I’d not been forgotten. The world was still revolving out there & people were doing things.
Then, when I had a better day I would reply to them.
As to the recent predicament, just take a each day as it comes, don’t look at the days ahead. Do all those things that you’ve put off for another time. We all have those!
Make a list before you start them and cross them off as completed, this is a physical acknowledgment of your achievements.
Be glad of another day on the planet, stay safe, isolate and be grateful.
Hi, sorry for not replying sooner. I’m ok - thanks for asking. I’m not finding it too bad at the moment. I think of the long periods I have spent in hospital, when I have been so ill, then I know I can get through this! I have still not seen my Dad or my daughter but we communicate every day. I have missed my daughter’s baby scan, which was sad, but even her husband wasn’t allowed in with her. I try to be positive and grateful that I’m even still here, and send my thoughts and prayers to all of you that are currently going through treatment and worries. Stay strong and stay safe
Hi @Lulu, it must be tough not seeing your Dad or daughter and sad missing your daughters baby scan. Sometimes perhaps we all find it hard to stay positive and grateful so please keep posting as we are all here to share what it is like for us during the isolation period and we are all here to support each other through it and we will. Stay safe that is the important thing.
Hi Erica, I hope you are well. Thank you for your comments. I trust you are managing to stay occupied? It’s funny isn’t it, sometimes you don’t even want to go out, but you like to have the option, don’t you?
Yes, @Lulu, you are so right, if someone tells me not to do something, I immediately want to do it. It is also so interesting that before our isolation there had been a lot of wet days and since our isolation the sun seems to have been out nearly every day. I am definitely keeping occupied and am quite content in our flat, it will be weird launching myself into society again!!
@Lulu no problem at all! I’m glad you are okay! As you say @Lulu sometimes what can get us through difficult times can be thinking about our past experiences and what helped us cope. As Erica, says, this must all be so tough for you but so encouraging to hear you are able to communicate every day. how are your family doing?
@Erica oh yes! I remember we spoke about this earlier in the week didn’t we? How it will be a strange adjustment when we are able to go out and see people in the flesh again. Like we were saying, it may seem so far away, but I can only imagine it will be change!