Hi, this is my first post on here, just joined on behalf of newly diagnosed husband for now. Still fairly shocked as were both in our early thirties and I was pregnant with our second child at the time of diagnosis. Reading some of the posts on here people sound so positive, I'm afraid I'm still pretty much in shock at the moment. His 1st 6monthly check is in a week or so and I'm starting to feel quite down at scared etc hormones probably aren't,t helping since I have a nine week old baby. I'm sorry if I sound quite maudlin compared to so many of you, but right now every lovely thing my girls do just feels so bittersweet. When I see my new baby coo and gurgle with delight, it breaks my heart to think of what may be to come. Iv felt so angry at times, 'its so'' unfair, why us, why now? Etc I no many of you will have felt the same and that it is pointless to waste time on such questions, but I just need to vent them somewhere. We have only told our nearest and dearest, its so hard to keep it to myself sometimes. Sorry for being so negative, I just needed to get it off my chest, most of the time I cope by being in 'denial'! We've been together since we were teenagers and I can't face a future without him, sorry I'm whining again! Would be helpful to speak to anyone who can inspire a bit of optimism or similar age / situation. I don't always think its a good idea to tell him how I'm feeling as I don't want to bring him down, but equally I can't bare to see him hurting - what do you say??!
Can't believe I'm writing this!: Hi, this is my... - CLL Support
Can't believe I'm writing this!
First off, you are among friends here so there is no need to apologise. We've all been through all sorts of feelings. I decided quite quickly that what had happened to me could not be undone (currently) therefore not to worry about it and to focus my energies on the future. i would suggest that with a young family you have something positive to focus on. I'm not as young as your husband, but even at my age (56 when diagnosed in June 2012) what i read suggested i was "young" for CLL. I've never pursued validating that but i would suggest that he has strength on his side which will help ,use that to your combined advantage.
One of the challenges we all face is who to tell and who not to tell, here you have to make your own decisions on that and everyone has their own opinion. For me i control it carefully but i have a small group of friends i trust who know. I see no reason to burden others.
Consider, if possible one or both of you attending the CLLSA meetings at some time I went to my first one in Cardiff recently and found it very uplifting, the messages coming out of research are very positive moving forward and hopefully we can all benefit in the future.
I hope things go well in the future for your family.
Rob.
All your emotions are what I guess we all go through at first.
However,I can tell you that here I am 17 years after diagnosis,untreated,and living a normal life.
I worked fot 11 years after diagnosis and stopped working at 60,as was allways planned.Since retirement I have kept very active and do works for 3 charities.
I was diagnosed at 49.
As Rob says try to attend a CLLSA meeting and have a chance to meet other CLL Patients,Wifes and friends.
The next meeting is in Liverpool on 12th March.
William
Hello mamof2, I am so glad that you have found a place to vent, it's so hard coming to terms with the diagnosis as I'm sure, like me, you had never even heard of this type of leukemia. I can really understand where you are coming from with this news coming at the same time as another life changing event. I was diagnosed the day before my wedding! I was only 27. To say it was a shock was an understatement. I think the diagnosis coming at the same time as the wedding forced me into a denial. If I had £1 for every time I said "I'm fine" over the first six months of diagnosis, I would be typing this on a gold & diamond keyboard!! Not talking about it lead me to feel very depressed and scared once the initial shock and denial left. My one piece of advice to you would be to talk to your husband, obvs not in a hysterical, aaaarrghgh, I'm so scared manner, but calmly and get your worries out in the open. One of the worst parts of this disease is the unknown. He could get treatment?? He may not get treatment as its not required right now?? He could be on watch and wait and never need treatment his whole life?? The unknown is confusing and scary, so your feelings are valid, so please don't apologise for venting. I am 5 years down the road from diagnosis and 33 yrs old. I am a mum, I run 10k's, I work, I'm at college & I have CLL. This hasn't stopped me from living my life and hopefully your hubby will be the same. Wishing you & your family the strength to cope with this and wishing your husband good health.
Debbie
XxxxxX
I say, bless your little heart. My husband was diagnosed 3 years ago (although apparently the medics have known since 2006) at the age of 73. We sat together with 40 odd years of marriage behind us while they told us, and gobsmacked wasn't the word! We are inseperable so speaking as the other half, I know exactly how you feel and what you are going thro. Nowthen the fact that Peter is much older than your husband makes no difference to the person sitting watching!! I feel panic, on my own, what will become of us, what are we in for just the same as you do. I tell you all this purely to let you know you are not on your own. We have two lovely daughters, grandchildren etc etc, they were all devestated - but we are still here and aim to be for a good time yet. Peter is still untreated although his white bloods are nearly off the scale, but there is good treatment out there for when we need it, so please please dont despair, there is a lot of hope for you and your family. What I've said won't help you sleep nights, and yes it is hard to discuss this with your husband, my husband tells everyone there's nothing wrong with him, and certainly won't talk to me about the future, thats why I joined this forum. I would be very happy to talk privately to you if there is some way to do this, but in the meantime I send you my love and respect for all you are enduring, and wish you well for your 6 monthly check up. Remember you are a team, and will be for a long time. x
Hi I so understand what you are talking about. I met my husband aged 16yrs wed aged 17 yrs and had my 1st baby 18 yrs we have been married nearly 40 yrs. I cannot conceive of a life without him. Do not try to become whole again too soon, try to work through your emotions. Easier said than done with your family to consider. Time is a great healer, but it can be hell during that time.Keep blogging as we will all help to give you the support that you need.Good luck and best wishes.
I would sugget some counseling would help,iether together or seperately.Your Doctor can arrange this .it is usualy free, and just helps off load and perhaps see things in a different light.Have they explained the blood tests to you? If your husband is only going every six months there is not a lot to worry about at this stage.I was diagnosed last June but had to go back every three months until the last time when they said come back in 6 months unless it gets worse.Worry of course does not help iether of you.Perhaps there is a group near you,if not specificaly for CLL the Lymphona Association is very good and the atmosphere is very upbeat even if people have had treatment.Anything else we can help you with iether contact us wholly or ask for direct line contact details.The most recent technology in the USA is very positve and it may prove in the end that your worry is unwarrented.Please feel free to contact again anytime.
Hi mamof2 I too have cll and totally agree with all the comments given, it is a shock and your emotions run on overdrive but you will get to feel better with time. A lot people are on 'watch & wait' there's nothing else you can do but be very positive and enjoy life to the full (I know you won't be thinking like that at the moment) Each time you see your consultant and your results come back good you will feel better like they say time is a great healer.Were all here for the same reason so keep in touch if you need to. Please try and be positive x
Hi, hope you are starting to have more hope after the replies you have already received. My situation was similar to yourselves in that I was diagnosed when I was pregnant with my first child, in my thirties. I had another child about a year and a half later before needing treatment. I will be honest and tell you that the intervening years have had many difficulties but, although relapsed again, I am working full time and feeling well. My daughter is at university studying medicine and my son is at college. I am so grateful for the opportunity to have seen them grow up and be part of their lives and look forward to see them married with children of their own.
Treatments, if needed, have improved so much during these years and, hopefully, one day soon a cure will be found. One huge benefit we generally have over many other cancers is the time we have to consider treatments. Staying positive does help. One thing I have learned to do is to love the life you have. I may not live my life quite at the pace of other people but I have time to savour it. I truly hope that you cam come to terms with the diagnosis and live the life you have, not letting fear of what might happen in the future ruin what you have now.
Best wishes x
Hi mamof2, I'm so pleased that people have responded to what was a heart rending post for me to read, I must be honest. It's so good that younger people have posted to share their experiences with you because in reality CLL is more rare in your husband's age group.
I'm 54 and was diagnosed 9 months ago. When I was in my early thirties 54 probably seemed old but now 74 doesn't sound too old to me (in fact it seems like a brilliant figure to aim for!). Of course your fears are intensified at your age with two very young children because serious illness was probably never on your radar and must be more shocking. And unfair!
To me the only thing I can imagine being worse than having this is for my husband to have it. Loved ones/carers must suffer horribly and I say that after speaking to a family member this morning whose son in his mid 20's has an aggressive sarcoma in his leg (cancer). He's coping but she isn't and constantly needs to ask questions that he doesn't always want to answer. He thinks she's fussing and sees demons where there aren't any. That must be the difficulty in talking to your husband because when you share a fear, sometimes it's hard to discuss it in case you upset each other. But you may need counselling because it's soon after the birth of your baby, hormones may play a part but you need to vent these emotions and fears. Speak to your GP and see if there's a service to help you. I know Macmillans have a specific carer support group and contacts for you to speak to about this.
There are lovely people on here who have offered help to you by pm too.
Being in denial isn't always a good strategy long term because the hurt is building inside so like others, I'd urge you to talk calmly to your husband and share this together as a joint project almost. I know I couldn't cope without my husband's support and I know he feels better being part of this with me. I don't have very young children but I have a highly dependent son with special needs so I'm a 'forever mum' and like you have deep fears about that.
You don't say how your husband is but if he's on his first 6 monthly monitoring, there doesn't seem to be any immediate alarm bells ringing. Mamof2, he could be really well until your children grow up. Don't let every day worrying destroy that time, it's so precious. And at 30 he's young and fit enough to benefit from the enormous amount of promising treatments that will be there if or when he needs them. Hold on to that belief and hold on to each other because he could be around for a very very long time.
Use the support on this site and don't be afraid to reach out for the help you need. It's certainly not whingeing, it's self therapy and self preservation! Sending very best wishes for his consult. Tell the staff of your fears, ask for a specialist nurse contact. And contact any time on here or privately if you need help. Warmest regards,
Newdawn x
Newdawn x
I was diagnosed in December 1994 at the age of 39, my son was 18 months old and at the time I thought I'd never see him grow up and that he probably wouldn't even remember me. I had my first treatment in1995-6 and had 11 years with no symptoms at all. My first relapse was in 2007 and since then I've been absolutely fine. I swim once or twice a week and play squash two or three times. I accept I've been lucky to respond well to treatment but you've got to take advantage of the good times and not waste them wondering what may happen.
My son is now at Oxford studying classics and I've had a terrific time because getting CLL/SLL makes you appreciate what you've got.
Hope this helps
What an uplifting post The Frog, it certainly helped me for one! Hope the good times continue for you and your family and your story must give renewed hope to the under 40's diagnosed with CLL/SLL.
Newdawn x
Dear Mamof2
I too was diagnosed in my 30s and understand the panic, fear and frustration that you both will feel. I am glad that you have chosen to share your feelings through the site - I faced my diagnosis without this communication tool, but I know it would have helped if I could have had people to talk to who had some knowledge of where I was coming from.
I am still on watch and wait 8 years later. Have had no treatment and still work full time. I probably look after myself now more than I used to, as I realise that currently I am the only treatment - this means I eat properly and make sleep an important part of my plans!
After I was told, I used to watch my young son sleeping (I was a single parent at the time) and wonder what on earth would happen to him if my time was cut short - he has grown up knowing that his mum has 'funny blood' and knows that I do get tired, he has even attended hospital with me for checkups so that he could understand where I went and what happened. He doesn't seem phased by it at all now and it is our 'normal'. I now creep in and watch him sleep (he would kill me if he knew as he is a strapping teenager), but I feel confident that I will see him grow up and have little fear.
I am sure that at times you feel sad and desperate - in a way, I am sure it is harder watching someone you love dearly be in such a situation than be in it yourself. My advice, for what it is worth, would be go with your feelings and try not to block them out - I thought at one point I was going mad as I felt that I became a cancer cell and lost myself within it - at this I asked for a few weeks off work and sought help - my local GP fixed me up with counselling, I had a chat with our vicar (not that I am remotely religious) but I felt he would be a pretty good listener, I took up some yoga and did a lot of swimming (if this site had been around I would have spent a lot of time on it too!). Eventually, and it wasn't quick - I found myself again and I resurfaced out of the gloom.
There are still times when I feel low particularly before my wait and watch appointments - my anxiety levels go up and I find it hard to sleep - I always take a full day off for these appointments as I believe I should invest time in myself to assimilate all that I am told (or might be told). I guess this is how it goes and how it will be, for me.
I do hope your husband's appointment goes well and that together, all of you, will continue strong into the future.
Things will settle down and a new 'normal' will be established,
Take care.
Thank you all for taking the time to write such heartfelt replies, I will try and reply properly tonight when this hungry baby and crazy toddler of mine ever go to sleep and give me a minute xxx
Hi there
understand completely what you are going through , the shock , the anger etc are all part of the process; go and smash some old crockery up (in the sink ) was one suggestion to me -- it does help relieve the feelings ! Do you have a local cancer care centre near you offering pallative care to both patients and carers , or does your local authority have a carers support section ?. We are lucky in having both , and they were/are a life line to me . Make enquires , ring samaritans or CLL support or BACUP,or Macmillian , if you are really desperate -especially in the middle of the night .They will listen , and it gets it off our chest, and helps the coming to terms with everything , and they are not emotionally involved like family and friends are .There are no real rules for this 'game' just do what you feel is right for you and your family .
One book I found really helpful , and was recommended by the hospital , was The Selfish Pigs Guide to Caring,, by Hugh Marriot . Its funny , honest and open , and very practical , and puts things into perspective , and is not affraid to tackle 'taboo'sujects , or the impact on your emotions .Tells you how to deal with other people , and their sometimes thoughtless , though well meaning responses to your situation , and their embarrassment at not knowing what to say to you ,and those who also 'disappear ' .It suggests ways of how to deal with doctors, specialists , and the 'powers that be ' /officialdom if you need practical or financial help at any time .A 'dip in book ' to go back to time and time again . Good luck . Give yourself time to adjust to your new situation , and enjoy your children ! xx
Hi again, well I'm sitting here feeding a very hungry baby so typing with one hand rather slow! But at least my oldest is now asleep! Where to start?! Thank you all again for taking the time to reply, it really has been help full, there's so many responses I've forgotten what I wanted to say to each of you! I didn't explain the full picture last night, sorry - we found out by chance, a blood test to rule out appendicitis one night in A & E after sudden abdominal pain (which turned out to be nothing). At the moment he is in watch and wait with levels that don't concern the doctor. She referred us to a psychologist to try and help deal with living with uncertainty ( but it took months to get the appointment). The GP actually broke the news 1st when he had to get bloods repeated (in the hope it was just a virus) but he promised it wouldn't affect life expectancy or affect him in any way?!! A trip to the haematologist soon told us otherwise! I fell apart, took time off work and he supported me more than anything else, which I feel very guilty about. I told my boss and asked her to tell some of the other senior staff but told them I didn't want to talk about it. I did so because I am a nurse working in an intensive care unit and I felt they should be mind full of which patients I nursed while still dealing from the diagnosis (many are there due to chemo induced problems etc). Upon my return I discoverd that many more people knew than where supposed to! My husband told work he had tennis elbow. Anyway after yet another GP told my husband he'd probably be fine (when getting sick note), I decided ' stuff it ' I'm going to believe him. I was finding it hard to get through the day and when you have a child to look after you just can't do that. Believing he'd be fine helped me go on, I've told myself if it n't been for that blood test we might not have known for another 10 years or more and we'd have been none the wiser, so then he could have had 20 yrs or more on w & w from there, and by the time he needed treatment if any , it would last another 20 yrs or more by then or there may even be a cure by then. But this of course is me at my most optimistic, the real worry is what if it does advance quickly now etc, at 34 there's more time for it to misbehave. I guess this is why I have become scared again in recent days as we will soon see just how quickly it is or isn't moving and so may optimistic bubble could burst. There are so many more things I could write, but to be honest my hand is getting sore!! I just wanted to thank you for showing me that a long. W & w is a real possibility and not just me being in ' denial '. I will let you know how we get on. I'm hoping I can get my husband on here but only when he's ready, its hard as i,I'm sure you all know accepting that this is part of our lives, coming on a forum makes it very real. I think he's still angry that he has it at such a rare age etc. Anyway take care, will keep you posted and thank you again xxxxx
HUG, and another three hugs.
Regular blood tests, like pap smears and other regular cancer checks, definitely trigger feelings of anxiety, fear and panic - basically an attack of the 'what ifs?'. Do whatever you can to help calm your mind in the week or two leading up to the test and result: there are lots of mindfulness and relaxation techniques; distraction may work, cognitive behaviour therapy might give you some ideas to help you manage this very normal anxiety. Eventually they will become routine...
Some of us find that understanding the nature of CLL helps us feel more in control and less prone to anxiety, though that doesn't work for everyone. And some find being pro-active about fitness and health gives them a sense of control (great idea too!) Some look for and pursue alternative treatments and that helps to give them a sense of control. And some simply get on with life, one day at a time. I'm someone who needs to feel in control, my husband lives in the moment. It can be hard talking my through my fears and about CLL with him.
Planning for the future is hard and confusing: there is so much to let go - expectations, hopes, some dreams and goals. I have coped by taking a more philosophical view: what will be will be and my job is to find and celebrate the enjoyable bits and reduce and manage the stressful bits. If I do those things I knew the future will take care of itself (does anyway!)
Don't apologise for your emotions or how you feel: definitely share in this and other CLL forums and groups - know that although we all experience life differently and have different circumstances, we all live with the shock and grief of being told we need to deal with a as yet incurable 'terminal' cancer. We remember what that was like in the early weeks and months and are sympathetic to your needs.
and another HUGE hug.
I like your philosophy anaturallearner. It's an approach I try to embrace too.
The one thing I cannot accept about CLL is it's 'terminal' tag. I cope with this by telling myself life is terminal anyway with no promises.
I think the responses mamof2 has had on this have been terrific and I hope have helped in some way. I've been particularlt pleased to hear from first time posters...don't be strangers now, you have a great deal to offer us all!
Newdawn x
Receiving the CLL diagnosis was a wake up call for me. It really was the first day of the rest of my life.
Immediately after the bombshell, I remember feeling angry that everyone else could take their life expectancy for granted, living in cosy entitlement, where as I had had that complacency stolen away. Every morning I'd wake up and there was the diagnosis lying next to me, ever present.
That was six years ago and I actually feel more fully alive now than I did before. I know what's coming ahead but that only enhances every moment of feeling well.
Before diagnosis I procrastinated, feeling I always had tomorrow but now I cram every day to bursting and relish being alive. Weirdly, CLL was quite a gift.
Mamof2
Lots of great advice above, lots of people diagnosed young and little effect.
Do vent away, but also breath deep! Life has a long way to go: we only get one chance! And we also only see our kids grow and develop once. So enjoy it and watch their development with awe and you will do that with your husband!
We just don't know what life will through at us, but in general we don't let that stop us planning and dreaming. I am taking the attitude that CLL is no different, just that it is one more known unknown amongst a myriad of unknowns (many of which could be worse)! In all probablity, life will go on for a very, very long time!
My kids are 12 and 10 and I have no intention of letting CLL of get in the way of watching them grow, planning for the family future and enjoying life. They are incredibly active in sports / musical and I am going to continue to help them develop their skills.....even if I wheeze a bit now whilst I run after them!
Andy
Hi all, it does knock you for six, that first diagnosis doesn't it. I had moved and when I said to my doctor that I was feeling very tired and hadn't been able to get over a virus properly he said 'that will be the CLL'. He thought my previous doctor had told me, as normal they had picked it up from a blood test. I left the doctors in a haze and he make me an appointment with a haematologist. I came out not really knowing what it was all about, but being me had to find out as much as I possibly could. I was 62, but I had been showing symptoms while still at work, getting every bug going etc. Once I found out everything I could I went back to the haematologist for my next W&W appointment and asked for a copy of all my results, and asked what my FISH test had shown. She thought I was making a fuss and was over anxious! I told her in no uncertain terms it was my body and I needed to know the results because I had a sick daughter to look after (she has since died aged 38 and I am now guardian to my grandaughter). It turned out I had a 13q deletion which was about as good as it gets. That was five years ago. I've been hospitalised with a very bad bug that they couldn't control once and had a complete hysterectormy for endometrial cancer, but I'm still up and going and still on W&W, although I do pace myself because I have days when I am very tired.
Mamaof2, I really felt for you reading that, but work together, find out all you can, enjoy today and eat well and have fun. Your husband might go for years without any symptoms, but I'm sure you can face what comes together. If I might make a suggestion, they have a lot more prognosis markers now and as he has a young family he might want to know. However, you both might decided not to bother and to take each day as it comes, we are all different. The very best of luck to you and I hope you look back at this in 10 years with him still on W&W.
Ibrutinib as a monotherapy
I'm tired
CLL in treatment and possible long Covid and managing isolation
