Need encouragement for love

[school45]

My husband was diagnosed just 4 months ago with sll/cll he's on W&W. He has felt really good physically, but emotionally lately he has really been struggling. I was hoping those of you that have been on W&W for some time could send some encouragement by sharing your stories. Thanks in advance!!

[AussieNeil Administrator]

I'm in my 9th year of W&W and my first year after diagnosis was rather challenging infection and fatigue wise. Emotionally it can take some time to adjust to living with what is still an incurable, but thankfully chronic condition (it took me several years). Suggest to your husband that he explore the Pinned Posts to the right of this post (or at the bottom of the page if using a smartphone or tablet).

Treatment options are far better now, with non-chemo options becoming mainstream and there's plenty that we can do to improve our quality of life while we are waiting to see if we need treatment - about 30% of us never do. Further, researchers are becoming increasingly confident that a cure is not far away.

Your husband should read the 3 part Coping Strategies - starting with the top pinned post, which will hopefully encourage him to join our community and share strategies for living life well with CLL/SLL.

Neil

[school45 in reply to AussieNeil]

Thank you Neil, yeah I think just getting use to the idea of it being a chronic condition is the hardest part right now.

[ygtgo]

Hi school

I was diagnosed with CLL stage 0 aged 47 in 2006, and I have not as yet needed treatment. ... I'm still on W&W.

My experience was of being checked every three months for a couple of years, then it became every six months, and now every year. Others on the site have reported the same pattern.

Of course this is a worrying time for you, we all can relate to the ' shock ' of being told that we have CLL.

There is a lot of experience and goodwill on this site, I hope that you make good use of it, if you are unsure about anything just ask, you will not be ignored, you are not alone with your CLL.

I will 'personal message' you with a ' dot-to-dot ' page of how I coped early on.

ygtgo.

[school45 in reply to ygtgo]

Thanks so much, look forward to the message.

[vinnet in reply to ygtgo]

This is wonderful ygtgo!! I was dx 6 months ago. Did you do anything specific which may have given u wonderful reprieve? I am 65, stage zero and praying for similar w&w as yours!!!

vinnet

[Ernest2]

Four months isn't long to get your head round the concept of watch and wait, I think many of us took a bit longer than that, and we are all different, a key feature of SLL/CLL. I have to thank all the good folks here on HU for getting my head round the concepts of watch and wait, and all that goes with SLL/CLL. I managed about 4 years of watch and wait before treatment in 2015, but it was only the start of this year when I got my head round that first line treatment was over (2 years ago) and more significantly I am watching and waiting again. That did get me down a bit for a short while, until I got my head round it. The key is what you make of it. I think the first 4 years of watch and wait were some of the best years of my life because despite the effects of CLL it made be re-evaluate life and adjust the work life balance and all that stuff.

Now two questions - do you know what your prognostics are, so which group of SLL/CLL and how near to treatment you might be (I note your previous post about lymph nodes etc). Second question if you are ok to share this stuff, can you tell us a bit about your work or retirement situation. The bit of your post that stood out to me was the bit about physical health, so try to make the most of that and organise fun things - not just one offs but continous change of lifestyle. It is easy to get bogged down with all the unpleasant stuff that completely takes over, blocking the good stuff out. If you care to share what you enjoy doing then you will probably find others here with similar interests, who can discuss that in parallel with CLL.

I'm thinking you are in the UK where the birds are singing as I write and the weather is about to warm up. If not, others around the planet will have to help me out.

Best wishes,

Ernest

[school45 in reply to Ernest2]

No 4 months isn't long at all. His WBC's are at 44,000 he can feel swollen lymph nodes, but other than that he feels really good. He's very healthy otherwise. And no we're in the USA. He is only 50 and retirement is a ways off. We have a very full life of kids, family, work and hobbies. Just this little bump in the road.

[Ernest2 in reply to school45]

Hi School,

That's a big place. If you care to share just roughly where you are, and areas of interest you will find others here on HU with similar, as you are seeing. Bumpy road is a good way to think about it, so its a matter of developing the right suspension to smooth it out, and the occasional trip to the garage to get the shock absorbers and springs checked out. I'm also about the same age and still working, but no kids. CLL/SLL can be as hard and I think harder for partners and carers, so hope you are getting on with it ok.

Best wishes,

Ernest

[Newdawn Administrator]

Hi School,

Four months is so early after diagnosis and at that stage I was still trying to find some peace with the news. When we are diagnosed with any serious game changer, particularly a cancer, there's a natural process we go through before reaching a kind of acceptance. The problem starts if we get stuck in a phase and develop an overwhelming sense of hopelessness.

He'll find his own level but I've found knowledge is power. It just fears some people however. There's so much longevity and positivity around CLL and the treatment landscape is now expansive. Much more than when I was dx 5 yrs ago.

There's lots of inspirational stories on here for you both. I've found that understanding my enemy dissipates some of its power over me. Be strong advocates for yourselves and draw strength from each other and your supporters.

My motto has always been,

'Don't let the fear of dying destroy the joy of living'.

Wishing you both well,

Newdawn

[ap64]

I am only 15 months in but have been in a good place for most of that time. i worked thru the feelings and came to the conclusion that I could not control my health in the same way anymore. Someone upstairs was now in control. I was therefore going to get down or accept CLL as my new teammate in life and get on with it. I have studied a lot of literature and C G Jung and I work in HR and it has helped me be aware of the human struggle. Read about the steps in dealing with loss i.e. denial fear anger sadness gladness and acceptance. We all have a favorite bad feeling and can get stuck there before getting to acceptance. In other words if u tend to be a sad person u can stay sad longer than u should and not work thru the loss. Try and get him to think about himself ten years from now. If he is still in w and w does he want to be down for that time and lose all of the good times when he isn't in control as none of us are. There is so much to be positive about with the treatments today life is too short to be wasted. My theory hope it helps

[UK-Sparky]

You are surrounded bu caring empathic CLLers on this forum, many with wisdom, many on different stages of the journey. Much advise all good has already been said. Give your self time to accept, time to research here and understand that hopefully CLL is just another bump in lifes road

Hugs and prayers

UK Marc, 7 years watch and wait!

[marcyh]

I have a troubling marker, my genetics aren't good and my oncologist believed I would need treatment in a year or two. He told us to do our traveling. That was 11 years ago and I haven't even needed treatment! Each of us is different and we also cope differently. I dipped emotionally and needed help. I also needed to get to know myself better and take better care of myself. I learned there are no shortcuts when we struggle emotionally, and it takes patience. My husband's patience was also critical in my recovery. I have a new normal and it's a good normal. I am grateful for what I have learned.

A quote that has helped me: "Worry does not empty tomorrow of its sorrow, it empties today of its strength." Corrie ten Boom, Holocaust survivor

Marcy

[PNall in reply to marcyh]

I was given very troubling markers : this really helped my day.And my mom has read her book twice since my dx.

[Saska-Jul31]

Hi, I was diagnosed a year ago and am still symptom free apart from some fatigue. I hope your husband will remain well for a long, long time. An encouraging statistic is that 30% of CLL patients remain on W and W and don't need treatment.

There is a very encouraging post from Peter who has actually had to have Ibrutinib but with remission and great results so we must always hope.

I was already on an anti panic med when I got my dx though. It's a low dose of Sertraline which I 'm on for post traumatic stress after years of coping with seeing my dear mum and her sister both die most horribly of dementia. So yes, I sometimes have dark thoughts but the Sertraline helps.

I find I set out to enjoy all the good things in life as much as I can but pace myself when I feel tired.

Hope this helps and all the very best to you both.

Sue

[Hazel33]

I am 6 years diagnosed and still on WW. Sometimes it's an emotional rollacoaster but I find it's best not to dwell on it too much. Amazingly those around me don't want to hear me whinging, and I find now I don't think I should talk about it when friends have actually passed away from more serious cancers. The quote sent by Marcy is true, why waste time worrying when you should be using that energy more positively. No one has a crystal ball. Enjoy your life to the full. Good luck.

[MsLockYourPosts Passed Volunteer]

I don't know where you are in the US, but you might want to look at cllsociety.org - good information and links to CLL specific resources, but also information about in person support groups around the US meeting or being planned, conferences, etc. (top of the home page). Taking myself to an LRF conference and actually meeting others with CLL helped me a lot.

You might want to lock your posts to community only before giving out specific information. You also will tend to get more personal responses, as the original post controls the privacy of responses. You can edit unlocked posts by clicking on the v at the bottom and then scrolling to the bottom of the post to click on community only.

[Seven6]

Hi

diagnosed 3 years ago, stable and w&w.

As mentioned by many diagnosis is a roller coaster ride. Initially I was fine, however, there seems to be a process. Mine was feeling fine, feeling overwhelmed, feeling angry and unusually irritable. I tried to deal with this myself but slipped lower, I did have 12 months on an antidepressant - not necessary cll but perhaps this was the trigger to feeling overwhelmed by other life challenges. Perhaps there is something about being OK in asking for help, not my usual place. Today I have reached acceptance and returned to enjoying life. I do all I can to stay healthy, good diet and exercise seem a real help. I feel too I am helping myself. I have learned to be a bit selfish and listen to my health needs and respond to this. Today I love this world again.

Support is important and good information. Support from family and friends but also from professionals. I am now learning to ask questions so that I can become a self advocate and an advocate in the understanding of cll. I had never heard of cll before diagnosis or of chronic cancers.

All the best

Seven6

[Peggy4]

I think it took me about six months before I began to really calm down and feel anywhere like 'normal' This forum was mainly responsible for that. Ihope it helps you as much.

Peggy

[Hidden]

Evening School45,

I was given the official news Feb 9th 2017 my son's birthday. I am on a W&W as well, I can say it's been an emotional Rollercoaster for me. This group is very helpful. Sometimes I have a day that It doesn't cross my mind,but honestly those days are not very often. Lately I've been feeling much better, exercising, watching my diet, and getting caught up on my medical check ups I have in the past neglected to keep up with. I go in Monday for a second Mamo first one with areas of concern, put that panic feeling back in my life again . I haven't even reached the point of telling my adult kids. I go back in May for my first check up. My husband and I have talked and decided to tell them after this visit, will also know then if I'll have to share any other forms of cancer with them as well. I think men may struggle more with talking about there diagnosis, it is early I know I'm still feeling so many emotions, maybe it's the W&W that makes it so intense. Best wishes and prayers to you both.