It’s so good to be part of this forum
Everything is so up and down at the moment
It will be lovely to chat and share
It’s so good to be part of this forum
Hi @Snuze I am also glad that you have joined our forum, welcome.
Yes, my emotions have also been all over the place since March, so it is nice to know I am not the only one.
I have CLL and I was diagnosed in 2003, I have been a very lucky girl and I have been on ‘watch and wait’ or ‘active monitoring’ ever since. I have been shielding since March although since July I have been going for an early morning walk, all masked up.
However I had a great adventure yesterday and went for my flu jab at my GP’s, on the walk I really noticed the noise levels and the smell of fumes from the traffic.
They are now also doing routine blood tests now and the GP’s felt very safe for patients so I booked an appointment for next week.
If you don’t mind please tell us a bit about yourself.
Hi @Snuze. It’s great to have you. Be good to hear your story and share with you! How are you doing? X
Hi @Snuze Welcome to the Forum. I was diagnosed with ET about 18 months ago, along with Budd Chiari which causes clots in your liver. I spent about 6 months last year at home and like @Erica have been stuck at home since March. I spent four days in hospital again in September as I had a bit of a blip and felt awful, but at least I know I don’t have COVID as they tested me. I love the forum as everyone is supportive and genuinely cares about each other. Look forward to getting to know you. Lou
Hi @Snuze. I was diagnosed with Multiple Myeloma in 2018 and spent large chunks of that year and last year having treatment. I’ve been in remission for over a year and been in relatively good health and probably have about the best sickness record in my department which is slightly ironic. I was asked to shield in March but haven’t been able to follow all of the advice I was given as I live with 3 people who are neither friends nor family and have been going out the whole time and mixing with people in busy areas at busy times of day. I’ve been back at work since mid August after working from home since March. Welcome to our forum.
Hi @Snuze I echo the rest of our lovely forum members, it’s so good to have you join us. Please feel free to reach out for support on here and let us know you’re getting on. Like you say, there’s so much going on at the moment and it can feel incredibly overwhelming. How are you finding it all?
Aww! Thank you everyone!
I have CLL and am thankful for each day as I ‘watch and wait’
I’m finding this forum so helpful and feel less alone with my diagnosis…it’s such a difficult time for us all.
Stay safe hugs xx
@Snuze yes I am also so thankful for each day I am on watch and wait with CLL.
You are so right about feeling alone with your diagnosis, I thought I was the only person in the world and in an isolated bubble with the world going on around me.
We are here to support each other and if you would like to speak to someone you can contact the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 10am-7pm Monday-Friday and 10am to 1pm Saturday and Sunday or via email at email@example.com.
Staying safe is so important.
It’s certainly very easy to feel isolated. Many friends and family are kind but only someone who has experienced the same or something similar can really know how you feel. I’m very grateful for these forums and being able to talk to others in a similar situation.
@Snuze That’s a fantastic attitude, definitely the best medicine & as for Blood Cancer UK they are simply the best!
This is such an amazing forum, full of amazing people. I hope it helps to know you aren’t alone
Hello newby here. Found the forum which looks great and inspiring by all the challenges and way everyone everyone is dealing with them. Diagnosed with CLL in June by accident and on watch and wait. 54 years old and feel fit and well so somewhat guilty if I tell anyone as I don’t feel ill which is weird and not something that I have shared except for immediate family. Feel that’s it’s not right to tell people as I don’t want to be seen as having a problem which at the moment I feel like I don’t. If you know what I mean. I assume everyone reacts differently and think I may be blocking it out somewhat and to be honest struggling to know how to behave. Be silent and pretend nothing is wrong or be open and show people how life goes on. Either way doesn’t feel quite right. Hopefully someone else may have experienced this dilemma. Thanks for the opportunity to share as that in itself helps
Hi @TynLlwyn08 a great big welcome to our forum and thanks so much for your post, it reminds me of how I was when I was diagnosed, but luckily I did not have Covid times as well. You have shown the value of this forum already.
I was 53yrs old when I was diagnosed, and by accident, as I had had a gynae op which left me with a lot of symptoms and the Gynaecologist actually gave me my CLL diagnosis. That was 17 yrs ago and I am very lucky to still be on watch and wait, long may it continue. A lot of other people have treatment far earlier.
My main symptom now is fatigue and I have learnt to manage that, just say if you want to know more on the subject.
As to how to behave, everyone is so different. Initially I found it difficult to explain what I did not understand myself. Yes, I will agree that by some I was seen as ‘Erica, with leukaemia’ in the short term and other people had the same dilemma of how to behave around me. Hidden conditions are also so much more difficult that conditions that can be seen by others. Perhaps I would say just tell people if/when it feels right for you. The one thing I regret is telling my son, who was about 30 yrs old and lived away from home, but local, on the phone, I think it would have been more sensitively done in person.
Don’t forget that you have had an incredible shock, some people even call it a sort of loss of what you thought you had and that takes a long time to come to terms with.
We are here to support each other on this forum. The Blood Cancer UK has some brilliant information and if you would like to talk to someone you can contact the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 10am-7pm Monday-Friday and 10am to 1pm Saturday and Sunday or via email at firstname.lastname@example.org.
I am happy to answer any questions you might have with my experiences.
Perhaps there are others that can give their experiences?
Hi @TynLlwyn08 and welcome to the forum. I remember feeling the same when I was diagnosed 4 years ago. It took me a long while to figure out how I should be feeling, who I should tell and what I would say, and to be quite honest, sometimes I still face that dilemma. I know I blocked a lot of it out and carried on as normal. All I can say is just keep talking and being aware of your own feelings. Each journey is different. I wish I’d just gone with what felt right without thinking about it too much. However, thats easier said than done. Its still early days so just take it day by day. We are all here for you x
How are you doing @Snuze ?
Thank you. That’s really helpful. Take care
Glad you joined us. It’s not all about the Cancers on here…let your fingers stroll through the threads. We’re quite mad at times. Oh, I might only be talking about myself. Oops
I don’t have CLL so luckily I didn’t have to wait & worry. But I was diagnosed with AML one day & started treatment the next.
How & if to tell people…I came home for 1 night after diagnosis & told my 18 yr old daughter & 21 yr old son. Then I called my 70 yr old parents & asked them to come for a cuppa. I told them too & we all cried. I must have rung my 2 brothers but I can’t remember that! My really close friends were very aware that I’d been ill for the last few months & I called them one after the other to explain I was having my treatment in a local hospital & was relying on them to come & visit me.
Now I feel bad that I just dropped it on them but that was how I coped.
I knew my family & friends would get me through, they were what spurred me on.
It’s the ripples your diagnosis causes…one girlfriend decided instead of waiting for retirement she’d get a loan & buy her horse . Another decided to take early retirement to spend time with her 13 yr older husband. They had 8 yrs together before he died of a heart attack.
One of the downsides, it aged my parents.
We all cope with it in totally different ways, for totally different reasons & thats ok
Whatever gets you through.
I think we all deal differently when we first get a diagnosis. I decided to be a ‘one week wonder’ and get it over and done with. I was diagnosed three days before Christmas and so saw family then and told them. Then my husband told friends and told them to tell all the others so that we did not have to shock and surprise everyone time after time. The initial treatments depleted me so fast that I was really glad we did it that way.
A year later it was our 40th wedding anniversary and my husband had always longed for a big party to celebrate. We booked the venue and invited everyone and he was quite open that whether I was there or not we were celebrating! It was a fabulous event and I was definitely there but later that week I went down with yet another virus and was so poorly again. I always thank my lucky stars that it did happen. People still talk about it and the live band and my husband’s speech which told the story of our marriage through the songs throughout the years. My eldest son thanked everyone for being there, some had travelled hundreds of miles, and reminded them to go easy as they were drinking his and his brother and sister’s inheritance. Cheeky boy!
Hi @GrandmaJo I was also diagnosed just before Christmas (several of us seemed to have been) and the advantage was I could let people know in my Christmas cards, just.
I was fascinated in your 40th wedding anniversary celebrations, it must have been a brilliant, memorable occasion, if people still talk about it that says something.
I am no good being the centre of attention or in a large group.
Yes, I am also a big one for the delayed action virus, infection and my biggy, fatigue.
I now make the decision knowing that as to whether to go ahead with the event.
Does anyone else have that dilemma?