Good evening to you all. I was diagnosed with CLL in April this year and am currently on W&W. My last visit to my consultant in September I was told that if my numbers continue to rise as they are then I can expect to begin treatment within 3 to 6 months. I don’t really discuss my condition with anyone else and I tend to keep things bottled up inside. My relationship with my wife isn’t great and if I do mention anything all I get is a shrug of the shoulders but no conversation in return. I am 62 yr old and have worked continuously since leaving school at 16, I love my current job but have been off since my diagnosis and my employer informed me last week that they can not allow me to return to work as they can’t accept the risk of my catching some infection while in the workplace. Thus far they have been great and very supportive but they have to work in accordance with company policy. I accept their decision.
I have for some time been feeling very low, I’m a proud man and never ask for help from anyone but things are really on top of me now. My condition, my marital relationship and the thought that my working days may now be over. I see no future and feel completely lost. Things go round and round in my head but I can find no solution I just don’t know what to do. Physically I feel ok apart from my whole body aching, I want to carry on working but understand the need for caution. I’m sorry if this is a garbled mush of meaningless words but maybe it’s a reflection of how I’m feeling right now.
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Typhoon770
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welcome Typhoon770, "Meaningless words". There is no such thing on this site. You wil find that the support is unconditional here and everything is very much meaningful🙂. Im very sorry that you're going through so much, but remember that you will see light at the end of the tunnel. Im a perfect example of thinking the opposite but I did it. Even though you will have your ups and downs with cll, you will find it's not the end of the world🙂. It's very early days for you. Within time it'll get better. This is coming from someone that has battled mentally for the past 5 years since diagnosis. Have you seen a cll specialist yet? Make sure that u do because they are experts in this field. Post as many times as you want no question is stupid and this site is so very caring and supportive you gonna feel like family here. If u need to talk to someone, there are very good counselors you can talk to🙂. Tomorrow im heading for my first bone marrow biopsy. Getting ready to start treatment soon. Good luck to you you've come to the right place for support.
Hi there! It’s pants having such a diagnosis & it took me a year before I could accept the status quo & feel comfortable sharing. You have a lot in your head churning away - maybe your GP could link you to some talking therapy? It’s good to talk!
Cancer (any type) even if you are on watch & wait means your are protected in the UK by law in respect of work. The Equality Act. This means your employer should not discriminate against you, they have a responsibility to make ‘reasonable adjustments’ to your role. In my case aged nearly 65 when I visit service users in their homes I wear gloves, apron & an FFP3 mask. I don’t see people who have covid until they’ve fully recovered & I don’t visit people who are in densely populated establishments eg care homes/hospitals. Maybe there are things you can do at work & your employer is unsure & overly protective of you? Have a chat with them & tell them you want to work & ask why they don’t want you to.
Keep sharing on here! Everyone here is supportive.
There is no doubt CLL is an emotional roller coaster and it’s easy to get down after a CLL diagnosis especially if there are other personal issues facing you. However, please don’t let CLL compound your personal issues because there are good solutions to CLL especially for someone who has recently been diagnosed. I was diagnosed five years ago this month and my life has been fairly normal so there is no reason your life can’t be similar.
My primary question is why can’t you work? It sounds like you are good at your job and enjoy it so why stop? I know the government is heavily involved with the workplace in the UK but your immune system is likely in pretty good shape since you are early in in the natural history of the disease so why give up your job?
I agree - why can't you work? If that is your enjoyment from life, keep on doing it. I was diagnosed about 2 years ago and it does take an adjustment to get used to the news. You will get there!
Your company may have its own policies but they are not as strong as the legislative rights enshrined in the Equality Act for people who have a disability. Cancer confer instant eligibility for disability qualification. You are entitled to have ‘reasonable adjustments’ made to help you continue with your health needs. If they suggest dismissing you on those grounds, I’d suggest reminding them of disability discrimination and ask them how they intend to assist you in the role you enjoy and can still perform well.
I agree. This smacks of constructive dismissal. I have had to remind my employers of the equality act and ended up joining a union to help me with them being difficult.
Did you choose your username because of a fondness for a Rambler classic or because of how CLL was going to impact your life?
More seriously, under UK law, your employer does have certain responsibilities to you which my co-admin Newdawn is has noted.
With respect to your lack of spousal support, you are sadly not alone, as you'll find on reading this post: Hb:bhealthunlocked.com/cllsuppo...
A CLL diagnosis can certainly upend your life and your life expectations, but you'd be surprised at the positive opportunities that can arise. I see that you've already had a couple of members recommending you look for a therapist to help you through this unexpected transition in your life and I hope you act on this. You have a lot of life left to live.
Hang in there…..you have gotten so very good advice. Thank you for turning to this very special community. We have all had our issues coming to grips with our diagnosis so we are able to understand were you are at this time. Please be patient with yourself and take your time sorting things out. Even the best of relationships struggle thru a diagnosis such as ours so give her space and be patient with her. Believe me I know and it took my spouse years and it now even attributes to depression for him…..we have dealt with this for the 33+ years that I have had CLL and have been married 61 years….so see there has been lots of time for issues to surface.
Your age of 62 put extra stress for you as well…stand back and give yourself time to work things out with your company. We have some who haven’t shared their diagnosis with an employer. Employers simply don’t often ok ow how to handle an employee with such a weird diagnosis such as CLL. I pray you will be able to work things out.
I think I might check to see just how strong or weak your immune system is as you have not had treatments that are often the cause of a compromised immune system…you want to clear that. Discuss with your doctor the concerns your employer is expressing.
Since your spouse has shut down seek counciling with a close friend and the LLS is a great service to help guide you in everything.
The only way to eat an elephant is just one bite at a time!!!
Just remember we are here for you anytime and we are good listeners and d we are very fortunate to have a vast amount of very intelligent and caring people.
Those of us living in the US have great support from the Leukemia and Lymphoma Society lls.org as you mentioned and the CLL Society cllsociety.org/newly-diagno... While some of the material from those sites is of international relevance, (I've referenced the link to the CLL specialists maintained by CLL Society ), Typhoon lives in the UK and can tap into the many support services provided by the UK CLL Support charity cllsupport.org.uk/
We just happen to be the online support presence of this UK charity 😊
I'm glad you noticed :). This is one of the reasons why we request members to display their country in their bio, so that we can direct them to local support. It's easy to change via this link: healthunlocked.com/profile/...
HU only display the poster's country for posts, not replies, which is why some of us have _UK say, after their name. That way it's obvious even in replies where someone is from.
FWIW -- I have found that, like CLL defense against COVID, social support is best handled in layers. You've lost a couple of them with work and with your spouse.
Work, as echoed below, you do have some legal protection. I'm juggling that myself but my company was not in direct violation of the law; yours may well be. But that is not in your short-term control.
While there may be reasons for your spouse (misplaced anger or fear), that doesn't change the fact that that layer is not accessible to you right now.
So what other layers can be found?
1) Friends. I have found, as with any hardship, that some friends cannot handle the situation and become less good friends, but others step up and really help. Hopefully you are able to share your illness condition with them. Hopefully they will stand up. If they do, it will help a lot.
2) Religion. If you are practicing, a church or other religious community can be very supportive in these situations.
3) Therapy. Qualified social workers can help you deal with your situation and help you craft responses that will be helpful to you and give you a sense of possible action. Therapists are objective yet think on your behalf. They can be invaluable.
4) Outside interest groups. Immunocompromise takes some things off the table but some things can be done well with minimal risk. Skiing's popular in my northern home. Birding. Surfing. Just walking dogs with people.
5) Online communities. I've only recently been active here and am already well impressed by the community. It's been a help to me and I'm just some guy who posted randomly last week looking for peer advice. It will be here for you.
Of course you do not have to do any of that. I can say, however, with great certainty, that taking at least some small actions to build social support (note I didn't say "ask for help") might be a comfort and a way to take small actions that help regain a sense of control/influence. And these things do tend to snowball.
You feelings are very common, especially that you are recently diagnosed. The perception is you are on the clock and the unknown is stressful. When I was first diagnosed over 5 years ago I went on the internet and based on the information which for the most part was dated and obsolete. I was fortunate enough to find a good specialist and other sources of information such as this sight and groups on social media where real experiences are shared and the support/knowledge of others further down this road is priceless. My cll specialist told me over 5 years ago about all the new treatments (non chemo) and how for many it’s has become a maintenance situation. My last visit he told me they are closer than ever to (they don’t use the word Cure) providing treatments that provide a normal lifespan for many of us. It’s hard to understand how we got here and dealing with our world which has been turned upside down, you will find that you can work, enjoy many of the things you have always enjoyed before your diagnosis. Sure, you have to eat better, exercise, be more aware of people sick to avoid infections and work with your doctor to navigate what is needed to keep your cll at bay, but you will and have to move forward. Appreciate moments and simple things a little more and live your life. Staying positive is important and again so many on these support groups have so much knowledge to share, take advantage of their experiences, it really does make a difference.
hi,totally feel for you , maybe my positive story could help. I was diagnosis Stage 4 with massive infiltration of marrow and internal lymph nodes in Nov 2020 age 58. Like you I has worked since I was 16 and had no previous illness. My CLL only picked up by annual routine blood test for cholesterol. Hb and platlets were extremely low , so had a 2 unit transfusion immediately, I had no symptoms and felt good had been a full time dad since Covid started. I went straight to treatment and was back looking after my 1 and 3 Yr olds with 2 months and remission in 243. I now have daily acalabrutinib and live a full pre CLL and Pre Covid lifestyle. Keep positive.
Thank you all so much for taking the time to reply to me. I should clarify that my employer has been great from the very start. They haven’t terminated my position nor will they do so. They have looked at ways they can adapt my role to make it safer for me in the workplace as currently I work very close to around 40 other staff members. They are also looking at finding a new position where I can work from home. So there is still a glimmer of hope there. Not wishing to offend anyone but I always thought that reaching out for help or support was a sign of weakness, I have always worked things out for myself but this is proving to be a tough one to crack. I have been given several points of contact from my GP and my employer so maybe it’s time to throw my hands up in the air and accept that I need some help in accepting and dealing with my situation.
I know there are many out there who's condition is way more advanced than mine and just knowing that you are here and willing to offer your support is very comforting. Thank you and God bless you all.
Hi Typhoon, Iet me at least help with your work situation. Whilst it is within your employers rights to ask you to stay away off work for health and safety reasons, this is usually when you are contagious or a risk to others. If you want to go back, they are duty bound to talk to you and try to make reasonable adjustments. I trust that they are paying you your full salary? This is a legal requirement if they are stopping you from coming to work when you are healthy enough to do so without risk to others. Talk to your employer. Can you work from home? Work in a single office or space, or if out and about take sensible precautions such as wearing a mask? If you want to work then don’t accept what you are being told. Ring them today and ask for a meeting and try to come to an arrangement that works for you both. They will manage you out of your job otherwise. You are protected by the equality act - possibly even age discrimination - so no matter how good they are being, don’t lose control of your own decision making.
T... Who wouldn't be depressed after a blood cancer diagnosis? You're entitled to have some worries and negative thoughts about the future. Those close to you will also be thinking about what might happen to you and worrying themselves. It's a tough time when all you have are questions and no certainty in any of the answers. You can't always talk frankly to those who care about you, so try and find someone impartial who will listen and that will probably help.
I guess what I'm trying to say is you just sound normal to me, so be kind to yourself.
Now, as to the future. We're all different, and we all have our own CLL journey, but it isn't a death sentence for the vast majority of us.
Here's my story... I'm white, male and I'll be 65 next week. I was diagnosed with CLL in 2015. I had no symptoms until I noticed a lump on my neck. CLL cells filling up my lymph nodes. My bloods were normal apart from an increasing lymphocyte count. I started treatment within a year of diagnosis because of my doubling rate. My bone marrow was 85%+ infiltrated with CLL cells. Chemotherapy (FCR). At the end of treatment I was told that tests could no longer find any CLL traces - I was "MRD negative". Seven years later, I still am. I'm on the control arm of a clinical trial and get tested every six months.
I'm living a normal life for an active 64-year old and I don't take any medication related to CLL.
CLL is not considered curable, and I'm expecting it will be detectable at some point and that they'll get around to treating it again when its prudent to do so. But even in the past few years since my FCR, treatments have improved so they are less invasive or disruptive to normal life.
You have a future. It's not guaranteed, but what is? We all worry about dying in the early days, but why shouldn't your experience be like mine?
If you look at the Kaplan Meier (survival) curves for FCR treatment of IGVH mutated folk, you'll observe that they flatten out at 7 years. Basically if you survive 7 years, your remission becomes indefinite, with some early trial participants now into their third decade of remission!
That would be nice, but I don't think about it much. I just get on with my life. Anything could happen in the future, so I'm trying to enjoy the journey!
I'm so glad you wrote Typhoon, and everyone on here would agree I'm sure, it's just OK to garbly mush as much as you want - you were perfectly lucid, by the way. A diagnosis is frightening and destabilising (mine was 12 years ago!) and we all need time to be able to deal with the complex feelings that rain down.
You can do it on your own if you want to, it might be hard to trust telling others given what response you are having from your partner. That must be making you feel very rejected. So some of us ruminate on it on our own, but it helps to know that thousands of others are doing the same thing. You are not alone and this place is excellent and kind, and we belong here. And you are so welcome.
On the work issue, I have heard similar concerns after I told my manager. For my own safety I have mostly worked from home for the last two years (lucky that it's computer and telephone work) and go in if I feel I want to, but it may be that working from home is not an option for you? But these are things you can talk about once you feel that it's OK to do that.
The main thing is that you have got in touch. And we hope to hear from you again.
Hello, first of all by being here and sharing your worries with us, is the best thing you can do. We all have CLL or have someone close who does. I was diagnosed in 2018 when I was 66, had three years watch and wait before starting treatment. The shock at diagnosis was horrendous and I was so afraid. I was lucky in that my husband does support me as do most of my friends. Sadly people assume that when you look well, you are well and I think some people thought I was making the CLL sound worse than it was. Many couldn't accept that I was immunosuppressed and couldn't mix. We self isolated from the start of the pandemic but we are rejoining life a bit more now although we are still being very careful.
Please don't ever feel that you are alone. Your employer has a duty of care. If you contact Leukaemia Care or Blood Cancer UK you will find people to help with legal advice. Macmillan also have people who can advice you about living well with cancer. You should also look at joining CLL Support Association, this was the best thing I did.
Please take care. Alice
If you do need treatment, your medical team can and will advise you. Do you have a Clinical Nurse Specialist, these special nurses are wonderful with support
I understand how you feel as I went thru similar experience when I was diagnosed last year with CLL. First step is accepting you have CLL. As soon as you accept, trust me you will start working on how to deal with this and it will give you strength. Second step is to tell your near and dear ones as that will also give you strength. With advancement is treatment options, CLL is close to being curable. Try to not think too much and lead a normal life always telling yourself that you will be cured.
a lot depends on the precise “version” of CLL. I’ve been on W&W for almost 6 years. In that time, there have been A number of amazing new drug therapies brought on line. While there is no declared “cure” yet, many of these drugs, when used together, have put people into long lasting remission. CLL is now, in fact, one of THE most treatable conditions!!!
Dear T. Well done to come here! You said that you always felt that 'reaching out for help was a sign of weakness'. I see it as a sign of courage / of strength. Reaching out involves hearing others people's take on things, of getting more possibilities to decide how to move forward.
It is good to hear that your employer is looking for different ways for you still to work. I also wonder just how much at risk from other infections you are? Is there someway of getting your antibodies tested? I don't know much you have read here, but many of us on this forum have had Covid and survived it. The Birmingham Covid vaccination study showed that most of us on Watch and Wait do produce some antibodies. It is also wise to get your flu jab.
And then there is Paxlovid which us in the UK who are immunocompromised are all entitled to. Lots of posts on this forum about people's various abilities to get this quickly. I am also W and W, told my GP immediately when I had a positive Covid test and was immediately referred to my local hospital for Paxlovid which came the same day by courier!
I also caught pneumonia and then pleurisy as a side effect from the pneumonia. For me, antibiotics worked well. I am semi-retired and am a (family) therapist --so not in large groups for work--but I do go to the cinema, play mahjong with friends, swim, etc---although try to avoid the underground and London. We are, however, going by train to Scotland next week, and will see lots of friends. So while I am 'careful', I still take what I guess are 'risks'. However they are ones that I think are worth it for my quality of life.
As for your wife--there some good posts on here about spouses. I am wondering if you have children, siblings, nephews/ nieces and friends who also might be of support to you.
Good luck as you find your way forward. You've made a good start! Eleanor
Just to clarify.. We in the UK are not automatically entitled to paxlovid.. We are 'entitled to be assessed' whether we actually get it is dependant on that assessment of our SYMPTOMS.. To be assessed we have to be included on the NHSE severely immunocompromised list, have reported out infected status(we are entitled to free testing kits) and then referred by medic to CMDU
You are right Annie. I was certainly 'assessed' when the CMDU telephoned me. They asked about symptoms, medication etc. etc. Even when they approved me for it, I was then phoned again by pharmacy to double check that Paxlovid was not contraindicated because of other meds I was taken. As I only am on 'calichew' (Calcium and Vitamin D3) there was no problem.
Also my excellent GP referred me immediately to the CMDU. I know others on this site have had difficulties with their GP's not referring them. Eleanor
was told you won’t die from CLL but with it. You will go on for ages. My wife like yours but just get on with your own life. Am81 now on Calquence for CLL but feel tired and fatigued but ok. Enjoy every day as it is your last
Is there any chance you could land a home office job? To keep you busy. Or a lonely position, like a lighthouse keeper. I know it's nonsense but nothing better came to mind 🙂.
hello Typhoon - just to let you know that there are several treatments for CLL, and many more waiting in the wings. I finished a year's course in June, and haven’t felt this good for some time. It was an easy treatment with few side effects, and after the first few weeks it’s just a question of taking tablets at home - nothing to worry about, although I did! I’m getting on with my life now, and you will be the same. By the way, I had a doctor who said I wouldn’t need treatment for the foreseeable future, and another one who predicted it 'in the next ten years'. So it really is a question of wait and see and concentrate on enjoying as much as you can of your life now.
welcome to the forum. It is difficult to come to terms with it all. I was at least a year in a deep blue place when first diagnosed. It does get easier but of course is always there. People on this forum are kind, knowledgeable and understanding and are always there for you. Keep well. Mags
WELCOME!You have joined the right community of folks that know what you are going through, share their journeys and have a wealth of information that is ALWAYS current. If there is one suggestion I can share with you (ok maybe more) - this is a scary disease and sometimes we feel hopeless in trying to fix ourselves and have to rely on the medical staff - GET yourself a DR CLL Expert and get yourself in a current CLL study. My husband is in one and it's been Godsend. May I suggest your wife might be in fear and doesn't understand CLL and doesn't know what to say...there are,a lot of webinars that can teach both of you of what this disease is about, what to expect in Watch and Wait. I will have you both in my prayers and please keep us updated. GOD-BLESS
It was a shock to be diagnosed with CLL and it took some time for me to accept my situation. I know liken it to an annoying companion who refuses to go home. Having it coupled with stopping work which has been a part of your identity since you were sixteen is not just a double whammy but much more.
Your wife may come around after some time but in the meantime, you have us. I agree with JEAA that reaching out for help is a sign of strength not weakness.
For myself, I talk to a therapist every two weeks by phone. I find it very helpful to share my goals, fears and reactions with her. I have learned setting boundaries with a few relatives who insist on giving me outdated and uninformed advice. And I have lots of support from family and friends.
I would recommend seeing a CLL specialist as soon as you can. Doctors who aren’t specialists in this particular cancer sometimes suggest treatment based on outdated protocols such as the absolute lymphocyte count reaching 100. A CLL specialist will know there are several other markers that are more important.
I'm with you, Patti. Typhoon, as I read your post, I couldn't help but think how enormously difficult it would be to suddenly lose a job you've been at most of your life! In fact, I am not sure I would find that any less distressing than CLL. And to have both landing on you has to be incredibly depressing. So many others have given you very sound CLL advice. I would just want to add that, if you can possibly NOT work from home but go to work as you have been , I have to believe that might brighten things quite a bit. I know when I retired, I was surprised at how much I missed my work "family". So it's wonderful your employer is willing to work with you (as they should -- and I do wonder on what basis it was decided that it would be too dangerous for you), and hope you will consider continuing to work with others. Definitely talk with your CLL Specialist about your general risk (what is your neutrophil level--that can be important), get their thought on whether it would be all that risky just going to work. And push yourself to get out there, away from wife, back in your work environment to the extent you can. Anyway, those are my immediate thoughts. As everyone, very glad you have posted on this site, and please keep us all up-to-date, okay? Deborah
I know I am projecting as to your wife’s behavior. When my husband was diagnosed, I was (to put it mildly) upset. His previous bloodwork was 2018 and he had not heeded my pleas to go to the doctor, even when he was gravely ill with Covid. I considered seeing a therapist to work out my anger issues but I have a great support network and in the two months between diagnosis and treatment (started yesterday), I have gotten into a much better head space. Your wife should address her issues or, should you need treatment, you should look for a different support person. You will need someone who is supportive, flexible, and able to deal with your ups and downs.
I was on WW for 10 years, the longer the better as no treatment is a form of treatment. CLL is not a death sentence. When I did get treatment (Ibrutinib), I was only on it for about a year and a half and then was off all treatment for 3 years.
I never stopped working out, dancing, enjoying my grandchild and family. Did a lot of Reiki, meditation, Tai Chi and reading to keep a positive approach to life. Don't obsess on it, take control of your mental attitude and you will be free.
Welcome Typhoon. I’m sure you can tell by the overwhelming responses that you came to the right place. I’m on Ibrutinib for nearly 7 years and am enjoying life. It’s my third line of treatment. So easy to take three pills a day and get on with living. Your days will get better and you always have your HU family here to support you. Blessings, Sally
can you negotiate a work at home scenario? Even part time?
I’m sorry you’re going through this. I’ve found that once you learn more about this disease and you have had it for a while, things will look better to you. It could be worse in that we have more options to live a long life if we take care of ourselves and give ourselves self care as well. I recommend counseling if you are ok with it as it can help you and maybe even your wife too. Either way, it won’t hurt. You sound like a kind responsible person so don’t let this disease get the best of you. As much as you can, try to forget you even have CLL and go on with your life. You still have a lot of living to do. ☀️
Welcome and sorry you had to join us. I get the "I have trouble reaching out for help" when we were raised to be self-reliant. But I think of the problems I encounter with this disease sort of like breaking a limb; there is no shame in using a temporary cast while the wound heals, and in fact it heals quicker/better when using the "help". So maybe think about it this way. There's a difference between always looking for a handout, and getting the help/support needed for optimal healing.
sounds like my story. I was dx with Cll while getting Tx for thyroid cancer. I quit work at 58 years old. I was mentally spinning. I got depressed and got on an antidepressant. After a short W and W ,I started Calquence.
2 years later, I now feel great, mentally, spiritually and physically.
So what worked for me and what may be helpful to you?
I don’t think there is a way around the initial shock, and total life disruption. We must go through it. But how to not get endlessly caught in it? Bottling it up does not work.
The community here helps. Journaling helps. Finding someone to hear you out helps. A good therapist helps.
There are many gifts as we navigate this roller coaster. Who am I now, what is my new purpose, what can I control, what is truly important?
You’ve taken a great step in reaching out here on this site. So many wonderful people and so much great info. You are not alone and so many great examples of people living very well with CLL at various stages of this cancer
I wish all the best and to discover all the gifts in this suffering. It’s not easy , it can seem impossible at times but so many here find a way. May you find yours
Hi Typhoon770. I felt quite sad when I read your post and was able to relate on a couple of levels.
As I'm of working age (hopefully for many years to come) and derive a lot of meaning from work - I understand how important that is for many of us. And also, how challenging it might become when health challenges change and that part of our lives is overturned.
The other relating was different to your situation. I am single and have no support person in my life. I am very aware of this therefore think ahead (a lot) about how I may navigate life with different scenarios playing out. Always with the mindset that I'm in charge of that and I need to figure it out and nobody else will understand as well as I do what I'm up against or make decisions better than me. Sorry to hear that you are in this situation living with someone who appears disinterested in what it all means for you, how you're feeling, and someone who is not teaming up with you. I can only imagine that is two-fold harder than working it out on your own (as I am). I've no co-inhabitant of the home to side-step or feel frustrated at.
Becoming educated is helpful. This site is helpful. Being optimistic and pragmatic is helpful.
I really felt your reach out here. Lots of great comments have been added and amongst them I hope you find some strength or something.
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