I’m new on here & just wanted to reach out to see if there are any others out there that are finding it hard whilst navigating these difficult & weird times?
I got diagnosed with MM @ 29 & have had lots of different treatments, radiotherapy, chemo , stem cell transplants, hip replacements & so on!
I also feel like I’ve been shielding for like 20yrs ,… I haven’t but 2 & a bit yrs & still only really Venturing out for Hospital Appointments and treatments!
It’s hard to know what environments & people are safe to be around - I know I can speak freely when I say that being immuno-compromised is tricky when navigating the outside world whilst Covid is running rampant🙁
Also it’s tricky getting together with friends - not everyone wants to or has been vaccinated ,. And then if you do arrange to meet you have to ask all the Qs ( have they felt unwell,… have they recently had a cold,… have then done a lateral flow test ) It’s hard to get out & maintain friendships in these circumstances,… has anyone else had experiences like this?
It’s just scary as I so want to get back to living again but covid makes living with cancer so much more difficult to fight!
Hello and welcome
I was diagnosed with ALL July 2020 and was supposed to be barrelling towards my transplant as we speak but hey ho… Unforseen circumstances! Hopefully in the next couple of months.
I understand what a hard balancing act this is. My family and friends often take LFTs before meeting up with me, yet recently even this isn’t enough with omicron and as you are fully negative one day then extremely positive the next day! (Take this as a pinch of salt as someone who is currently hospitalised for covid) but my consultant recently said he thinks it is now a case of when everyone will get not if.
Isolation is extremely hard especially emotionally and mentally! I do understand this however not sure if it’s because I am a home body but I personally find being isolated in the hospital to be so soul destroying. Unfortunately I think we’ve reached a point now where there are no easy decision and it’s about weighing the pros vs the cons.
May I ask about your recent blood tests or vaccination history? Please try to get all vaccines available, they really do seem to be helping in immunocompromised cases!!
Have you had a meeting with your consultant about this at all? Maybe he can shed more light on the situation?
Completely understand @SunShine77 . I was diagnosed with Multiple Myeloma 4 years ago at age 49, had radiotherapy, chemotherapy and a stem cell transplant. As my first treatment free year, I made an enormous number of plans for 2020 and they all got swept away overnight. Then like you I had to shield and didn’t got out for months, not even for appointments which were all by phone. I’ve taken every opportunity to do things since then but feel like I’ve been robbed of precious time in my life when I could have lived to the full. I don’t really feel that shielding achieved much except to affect my mental well being. I don’t know why vulnerable people couldn’t have been allowed to exercise like everyone else, whilst taking precautions and keeping their distance. Let’s hope that this is the last wave…
Hi @Sunshine77, I’m sad to read that you have been diagnosed with MM at such a young age. I am a lot older than you but I am definitely finding it hard navigating these difficult and weird times, as you say. I had my first transplant in 2013 and once I was in remission, I really ‘seized the day’ and took the chance to visit places and see friends and do fun things and I threw myself into my work as well. I had my second transplant in 2020 - all alone with no visitors etc - and when I came out there was no party to welcome me home (the first time it coincided with Mothers Day) or anything like that and now the shielding has gone on for sooooo long. I have friends who tell me I am being ‘too precious’ but it seems a waste to throw away all that wonderful NHS treatment by catching Covid and I don’t fancy any more tubes and needles than are required for Myeloma treatment. I am pinning hopes on getting my 4th dose soon and that maybe the omicron numbers will start to drop…(?)
Some people refer to cancer as ‘The Big C’ and I always thought it was enough of a challenge but you’re right, the combination of Covid and Cancer is pretty demanding. Its such a relief when other people really do understand, though. I’m quite new on this forum too and I have found it really supportive so far. I hope you are glad that you have posted and that you will find lots of encouragement from everyone here.
Hi @SunShine77 and a great big welcome, yes it is such a dilemma, what is the realistic risk out there, I don’t know.
You must feel that you have been shielding for 20 yrs.
There is nothing like human contact and interaction, just having a laugh and hug together.
I do keep in contact in all ways remotely and I am finding some people don’t want to tell me when they are meeting up, what they are doing or tell me afterwards and that really hurts when I find out.
Others say ‘oh, just come out and we will sit outside’ , well they don’t want sit outside and neither do I with our teeth chattering in the cold beneath our masks.
I live in leggings, a tee shirt and a hoodie. This is the 2nd winter I haven’t let my winter coat see the light of day.
The last time my sister visited 2 1/2 yrs ago she brought me a lovely wooly hat and scarf.
This Christmas she sent me 2 more wooly hats a scarf and gloves ???.
She knows that I have been isolating for 20 mths.
Yes, it does feel that I have been isolating for ever and also scary out there.
That is why I have found our forum so valuable and supportive.
I look forward to hearing more about you.
Look after yourself
Thank you all so much for being so welcoming,
I will write each of you back personally - however I haven’t been very well,… and am having lots of horrid tests to find out the problem,… I have just felt extremely tired on top of tired, which then makes you feel guilty for not doing anything or fear a blood clot for not moving every hour!
It’s nice to find a group that really does understand - for me the shielding has been the hardest ,. I’m a ex gymnast and was always on the move - I was nursing when I got diagnosed and when I got too ill, I had to say goodbye to nursing and I became the patient - I found that hard to navigate but then after re- training I started work as a yoga instructor which I loved - but then I needed a hip replacement ( right as covid hit ) so then no one was going to classes or even going out,… including me! And here I am two and a bit years later feeling very much like I’m in the same position as back then,… yes we have the vaccines & yes I’ve been vaccinated but the fear of catching it is still very much there! I know what the common cold can do me - I’m not sure I want to play roulette catching covid ,… so I stay in! Living becomes existing and your world gets smaller,… you retreat because you don’t want to have to tell friends or family to do the LFTs or ask Qs about their health or sit in the cold,…the tricky road that we’re on is feeling far tricker for all of us to navigate.
I hope I’m not coming across as really negative,… just sharing honest thoughts & fears - the sun will rise again tomorrow & this too shall pass!
Once again thank you all for your kind messages
Hi @SunShine77 there is no need to reply to each of us as your response has been so comprehensive, you really have had one thing after another. You conserve your energy for looking after yourself
I found it very difficult to explain to others what I didn’t really understand myself. Often people cannot understand why if you are diagnosed with a blood cancer you are not just treated and cured.
A friend of mine was made redundant and got some money and she wanted to pay for me to have treatment privately. You really find out who your friends are.
You were obviously very fit with a career you had to say goodbye too. That is a lot of losses for you at your age.
So you were also a Yoga instructor which you loved, I am a Pilates girl myself, more losses with having to have a hip replacement and Covid also taking away your hopes of making a living. Can you do any Yoga at all now? I recently had an op on the top of my head so no downward dogs for me at the moment.
You are certainly not coming across as negative I am so impressed how you have adapted to what life has thrown at you, you can always be honest with your thoughts and fears on here.
Be ever so kind to yourself and I definitely relate to your thoughts and fears.
I have just heard the weather report and it said that the sun would make an appearance tomorrow.
Please keep posting as I feel I can learn a lot from you
Hi @SunShine77, I’m sorry that you have mm younger and that you are feeling even more tired than normal. Hope they get on top of it soon.
I was diagnosed at 58 with mm, so older than you but I so understand how you feel when you say you exist rather than live. I had to give up running, my job and plans to move to Devon which was really hard. I’m sure when covid is less prevalent you will be able to teach yoga again so hopefully light at the end of the tunnel for you. Would you be able to do online yoga teaching?
There are so many of us that have been isolating, as you say it feels like forever, and only attending hospital appointments, and some having to work knowing how at risk they are. My stem cell transplant was in August last year so have had to wait for covid vaccines. I feel like life has turned into a game of Russian roulette for me and I wasn’t ready to give up on a healthy life, but you have little choice in the matter.
My 18yr old son tested positive Christmas Eve so 10 days of worry rather than a celebration as we had hoped. Luckily I didn’t contract it but sometimes it does all get too much
Having mm is bad enough but covid on top is !
As @Erica said you really do find out who your friends are when your life is so changed. My best friend has been brilliant checking in on me by WhatsApp through all my diagnosis and treatment and always puts a smile on my face. My husband is brilliant too and I sometimes think would I have been so good if he had been diagnosed, probably not but I won’t tell him that! Do take care of yourself and sending virtual hugs. xx
Oh I’m so sorry to read you have MM at such a tender age, and that you are feeling the covid restrictions. I’m not surprised though - you’re young and should be really living your life.
I’ve decided I’m going to have a chat with my consultant about exactly your points, at my next appt, because although I am a person who doesn’t need much of a social life, I’VE HAD ENOUGH, ha ha! Honestly, a wave at a neighbour usually does me on the socialising front - but two years?!? Aaaaargh! So heaven knows how you younger and more sociable element of us immunosuppressed lot are feeling. I really do feel for you.
And I completely get what you mean about just not bothering to do outings. I am at that point too. I want to see friends, but I don’t want to grill them about their recent lifestyle and whether they will test for me, and I don’t want to freeze sitting outside. And I also very much don’t want covid. So I have just…stopped. But this hasn’t done me any good.
So I’m going to try and risk assess a bit more confidently, with the help of my consultants. I suspect they might say outside only, until omicron has died down a bit more. But I want to know about going back to work/using the gym/eating out/holidays overseas etc. We’ve got to have a life at some point. Perhaps after this wave we can live a little in the spring and summer? Maybe you could have a chat about this with your consultants?
And there are some positives to give us hope. Omicron is milder. We now have antiviral drugs which reduce serious illness massively. We’ve vaccine protection. This wave is on the turn and should burn itself out by the beautiful spring - which hopefully we can then enjoy. Scientists are talking about covid showing signs it’s about to become endemic here. They’re working on drugs to better protect the immunsuporessed specifically. What we’ve recently experienced won’t last forever. Things are and will continue to get better.
I hope at the very least you will be able to enjoy a less worried Spring with friends. And you can always come here to talk to people who completely get your frustrations. We’re all frustrated too!
Warmest wishes. X
I can completely understand the upset regarding Xmas @Lyn99 … my partner has lived away from me for the last 2 & a bit years - ( He also works in a hospital ) we had it all planed, however the wk before Xmas he started to feel unwell & then Xmas eve he did another LFT & it was still negative - however Xmas morning @ 7.30ish he did another test & it came up positive - he was relieved that he didn’t come in case I had caught it but for me it meant spending Xmas on my own (family & children live away ( both children also work in hospitals )
So it was a horrid Xmas & NY was pretty much the same,… I hear myself as I’m writing and I know I sound like a right Debbie Downer but sometimes, perhaps more often than I like to admit I feel tired, not just physically but mentally too,… I’ve spent so long fighting cancer & than spending 2yrs with covid & shielding & not seeing family & living like a “ normal “ person & sometimes I just don’t see a end to it ,… are we waiting on another variant,… a stronger one! These are the thoughts that fill my head that I can’t sleep,… a eating disorder that had hold of me in my competing days has resurfaced with a vengeance ( I am seeing a therapist ) & honestly the whole situation makes me sad!
You have all be so lovely in your reply’s & it’s so good to feel the warmth of the group & feel safe enough to spill how I’m feeling! I don’t tell family or friends or anyone really - I just put a smile on & say there’s others worse off than me & there is which makes me feel even worse for feeling this way!
It makes me feel better that you guys are also feeling a certain way navigating this rd!
I hate feeling defeated & I hate feeling sorry for myself but it’s more than that,… people in our situation have lost so much ,… apart from the obvious but also just the carefree attitude of walking through a park , running ( which I love also) meeting friends in coffee shops, going shopping ,… touching mail ( ridiculous I know ) but OCD is also another thing to add to the list!
I must sound like a lunatic to a lot of you guys & im so sorry that I’m not spreading joy joy feelings or words of encouragement but this is how I truly feel & for once writing it down & letting it out is actually quite cathartic.
Its been very warming all your guys reply’s & im just so grateful for actually having the courage for once to join your group! Is anyone in this group from London? Do you ever make arrangements to meet as a group? My consultant said to me at my last check up that if I’m so anxious about spending time with friends that don’t understand then maybe I should try & meet up with people in the same boat ( he actually said that ) I just smiled & said thank you but really wanted to bop him on his nose! ( I’m not a violent person ) but honestly!
I hope you guys have all had a good wkd however it was spent & wish you all a awesome wkd ahead!
@SunShine77 it must have been so, so tough and lonely for you over Covid times and then the final straw spending Christmas and New Year on your own, I bet you and your partner were gutted. I hope your partner is recovering from Covid by now.
You are certainly not a Debbie Downer and I feel honoured that you can be honest with us.
You have voiced a lot of my thoughts and I certainly know the the smiley mask, it pops on so easily.
Yes, we have lost so much over the last 2 years and what does the future bring us, I just don’t know the answer to that million dollar question.
I am so glad that you have had the courage to see a therapist as disorders can easily raise their heads when we are isolated for so long.
You obviously have a good insight into yourself which is such a positive start.
We are here to support each other on this forum and the Blood Cancer UK support line is brilliant if you would like to talk to someone.
Please keep posting how you are and be kind to yourself.
The physical losses are hard but there is the carefree mental attitude that is snatched away and I for one think this might be too far out of my reach to ever get back, which is very sad.
I’m always trying to be positive on the forum and with the family but I certainly don’t always feel that way and you are so right that it is cathartic to address the elephant in the room that having cancer is for many a monumental life changing experience and our lives are physically and mentally incredibly challenging once our bodies start to fail and this becomes part of our future.
My back is damaged from the myeloma but I have recently put on a back brace and started gentle jogging just to grab back a little of the life I’ve lost. A small victory but it makes me less jealous of seeing all the healthy people outside my window, is that bad ?
I’m in Swindon so not too far from you but I’ve often thought how nice it would be to be able to have an online chat with people on here although technical instruction would be required! I wonder if the blood cancer team might be able to arrange something that we could attend.
@GemmaBloodCancerUK might be able to help with that one. I can imagine quite a nice virtual party with the lovely people on the forum with a glass of wine and maybe some slightly tipsy yoga moves. Although I haven’t met the people on the forum I feel like I have some special friends on here that have been hugely supportive along my myeloma journey.
You’re not a Debby Downer, you are honest and express yourself beautifully in a way we can all relate to. Looking forward to our virtual pub event xx
Hi there @Lyn99 @SunShine77 @Erica I have been reading this thread with much interest and wanted to also welcome @SunShine77 to the Forum. Thank you for your honesty and evoking a really important conversation. I hope you feel the support. @Alice_BloodCancerUK and I are working on an ‘ask the nurse’ session on the Forum soon but we could also think about how best to facilitate a support group too. In the meantime please do (all) remember that the Support Services team are here if you do need to talk things through
How to contact Blood Cancer UK | Blood Cancer UK. Kind regards Gemma
So, so true @Lyn99 - cancer is a massive, terrifying, life-changing attack on your mind AND body, and I don’t think many people can ever be the same again afterwards. The effects on your mind are the worst, I think. Cancer forces you to realise your mortality. To start assessing the number of days you likely have left, and how best to use them. Humans are not well designed to cope with facing their mortality. To accept their end. It’s an horrific experience that changes everything (for me, at least.) I’ve had to hypnotise myself into positivity to cope!
Oh @Fullofbeans, that’s exactly it. The strange thing is everyone has to die at some point and I almost find that’s a comfort. A bit like your hypnosis, in my mind I run through the positive stories of longevity I’ve come across regarding my cancer and try to guage how long I might live compared to my healthy friends. When I see other negative info. I try hard not to let it get to me but it always does. It’s the waking up in the night and the first thought is often ‘I have cancer’ and the associated panic that accompanies it is never welcome. I don’t think deep down I have ever really accepted it although I so fear its consequences…thankyou all on this thread for being brave and expressing the fears we all try so politely to keep hidden xxxx
What a great idea @Lyn99! That would be amazing if we could have a big Zoom party and meet each other!! I’ve no idea if it could be done but just the very thought of it is lovely! That’s so impressive to read that you are now jogging with a back brace and I hope that feels good.
Reading all the really honest posts above about the effects of shielding has reassured me that all these feelings ands frustrations are very normal for all of us in this shared situation. I think its easy to muster up strength for a short emergency but this pandemic has been going on for a loooong time.
Thank you @SunShine77 for starting off such a great discussion about these weird and difficult times. I hope that your tests are going well and that the results will be reassuring.
@Lyn99 I went to school with 2 great healthy friends and on paper, with me having blood cancer, it would have looked like I would have popped my clogs first. They have both died in the last couple of years.
I have outlived the ages that my very healthy parents died too.
I have also outlived a lot of my sons friends parents.
I am 72yrs old and was diagnosed 18 yrs ago and yes, I was brought up to be brave and strong and to put the smiley mask on and to politely not to show or share my fears !!!.
@Erica that’s certainly food for thought. I’m going to think of that story if I wake up in the night x
You’re definitely not alone with your anxious feelings. I was diagnosed in aug 2020 and though I’ve not been in treatments, and don’t really no any better regarding medical appointments and hospital trips as have no experience outside covid restrictions…
Regarding hanging out with social groups and work, I’ve been very secretive about my diagnosis so I’m not
really heckled about my cancer and though I’ve very cautious about covid I find small groups and house visits helps alot. If you’ve yet to feel things returning to normal (what things were like before) take small steps and build your confidence that way. We are always limited to what we can do to prevent things and though this maybe wise, sensible and reassuring… It’s never fullproof… Follow your heart and your head and never do or feel pressured to do something that doesn’t feel right… There will always be things that do feel right
Hi I just wanted to pop on and say that finding this thread was just what I needed today. I am at the end of my rope on the isolating and feeling like I can not do it any more. Nice to know I am not alone.