When does 'watch and worry' turns to 'watch and wait'

I suppose the question of when does ‘watch and worry’ turn to ‘watch and wait’ is such an individual one. For me I was diagnosed with CLL in 2003 at 53 years old and I now feel so lucky to still be on watch and wait. For me it took at least the 5 years for the worry to start to change to wait that I continued to work because I remember I felt very scared that I had cancer and that my work colleagues thought (and perhaps secretly I did) that if I had blood cancer and still had the symptoms I was diagnosed with why had I not been treated. For the 5 years I continued to work I was physically and emotionally exhausted and just worked, ran a house and slept. I was in a continual state of worry. I think when I stopped working, although I still did some voluntary work, I improved emotionally and physically and started to look at how I wanted to improve my life and what I wanted to do. I started doing things where I was just me, not defined by my CLL.
My mind is like a washing machine which is continually churning around my thoughts and feelings, it has to have a full load on the go. So gradually over time the percentage of CLL washing has reduced and other washing has taken it’s place. However every time my medical appointments are due the worry ratio increases and I also get a yukky feeling in my stomach.
I think when, at last, my GP explained that it was best to just monitor my bloods and symptoms because treatments have side effects and that I could also become immune to them and encouraged me to also chart my blood results myself it helped. I would be interested in hearing others thoughts on this.

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Hi Erica
It was interesting to read your experience as it sound similar to me. Although I am only 2yrs into my journey with Primary Cutaneous Follicular Lymphoma (PCFL)
I think mine has just changed to watch & wait having cut the cord of constant reviews. My type does not show much in the bloods until the physical signs are evident. I studied lymphomas so much in the first six months I am confident that I will know when I need to call the clinic. They are happy because it saves their very precious time and I am happy because I avoid unnecessary appointment anxiety. I can’t be cured as its such a slow grower but I can control how much it affects me and limit the axiety & stress by handling life normally within my limits. I have found balancing my exertions and rest works best. Spreading the energy needs, taking more rest, keeping well and refusing to stress about anything helps a lot. Regular routine checks just keep the worry to the fore. I prefer my home monitoring, with good GP awareness & support I feel it is a much betterway forward for long term incurables.

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@Aabeaton in the introduction page, you said you were diagnosed with CLL and you are currently on watch and wait. I was wondering if you could share some advice with our members who are going through the same issue? Any advice would be appreciated.

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Hi Joshua, When I was diagnosed it came as a bit of a shock as the reason I had bloods taken was for a TIA (mini stroke). Being a nurse every thought went through my mind when I received the letter from my GP to say I had been referred to the haematology clinic. I was in a state of shock. When my consultant told me I had CLL, I just felt numb. Then my consultant said I would get my bloods checked every 3 months and there would be no treatment at this time. She called it " watch and wait " which means treatment would only be given when my bloods or symptoms determined that I required treatment. It has only been 9 months since diagnosis and I still can’t get my head around " I have cancer but do not need treatment" I am still working as I feel I need to keep busy, and I am only 57 so retirement is not an option for me at the moment. I feel I am on an emotional roller coaster, go to work, eat, sleep, repeat. Some days I feel emotionally drained. I start to worry about a week before my next appointment, thinking what will I do if my bloods are bad. My husband and I love our holidays and up until this year would go on holiday 3 times a year., I can’t even get excited about booking a holiday now “just in case my bloods are bad” I do hope my negativity starts to improve soon.

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@Aabeaton,
It sounds like it was a very big shock to you and I cannot imagine how emotionally draining your situation has been for you, but I am pleased that you are able to go on holidays at least 3 times a year to somewhat take your mind off of it. Do you have any recommended tips you would suggest to people who start to worry about their next appointment?

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Hi, I felt I was reading my own experiences with your thoughts and feelings. I so agree with empowering patients to take responsibility for monitoring themselves between medical appointments and it seems you have got to know yourself well. Reading your post has brought lots of feelings straight back to me the ‘work, eat, sleep, repeat’ and the worrying about the next medical appointment. I am sure others will relate to your post, thanks for posting it.

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@Karen-Ireland and @Erica do you still feel like your occasionally go back in forth from feeling like you are on watch and worry to watch and wait? Does it switch day to day for you?

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Josh and @Karen-Ireland, good question, I think I feel so, so grateful to be on watch and wait most of the time, but when medical or blood tests results and appointments are due I go straight to watch and worry. Also the worry comes straight back when I hear about others experiences. What are others experiences?

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@Erica,

It sounds like the worry sets in every time appointments are booked or blood test results.

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Hi Joshua
Yes, clinic appointments cause a lot of stress and anxiety for all patients. Primarily it’s the fear of the unknown - will this be the time it all kicks off? What if it does? How will I cope? How will the family cope? What will we do for money if I can’t work?
You have so much time to wittle and worry from the point of an appointment letter landing on your mat to the eventual moment you get to speak to your consultant that you can totally send your self crazy. As Erica says your washing machine of a brain is on constantly and the spin cycle can go out of control. This drains you of so much energy you can do nothing which only gives you more time to worry.
For me the letter would arrive two weeks from the appointment. You then have to phone & confirm your tourture. I have to take a whole day off work to go to my clinic. I travel two and a half hours to the hospital - a very long & stressful drive. I even began to develop fears of landmarks along the route, that created anxiety even when I was not going to the hospital just through the visual association.
At the hospital you are faced with a waiting room full of cancer patients all in various states of treatment which compounds your fears & increases the speed of the washing machine. I can wait up to an hour for the routine blood tests. Then another hour & half before I saw my consultant. By which time my bloid pressure would be through the roof and I would be a jibbering wreck. Just to be asked if I felt ok & did I have any new lumps. I had to write down any questions as my mind would stop functioning by the time I got in and my husband always had to come as I was in no fit state to drive. Then after the appointment there is the emotional come down to earth time and recovery from all the stress whuch can take days.
After a few cycles of this I decided there had to be a better way to manage my condition as the constant stress was not helping me. I resolved to take more control & responsibility for myself and my team agreed that there was no benefit to constant hospital monitoring until a problem arose again.
Now it takes some courage to let go, I felt a bit panicky for the first month but I know my type inside and out so I just needed to build my confidence up in myself. That is also something that takes a huge battering when you get a cancer diagnosis. Its the total lack of control you suddenly have over your life that does it.
So in summary my solution to diagnosis is:
Try not to panic, take it step by step.
Keep your stress levels as low as possible. Stress & anxiety compound your problem.
Be brave, take the bull by the horns and educate yourself on your type of blood cancer.
Accept that you just have to go through all the diagnostics until everyone is sure what they are dealing with. This can take months, it was 6mths for me. Thats a very long time to be stressed out and that will exhausted you by itself.
Try to carry on your life as normal as possible, within any symptom limitations you have. Give yourself lots of breaks. You have a lot on your plate getting to grips with your condition.
Go sick from work when you need to and don’t feel guilty about doing so. Just make sure your manager knows what you are dealing with.
Don’t go to any event unless you want to. Be nice to yourself until you are able to cope better. Its probably one of the greatest shocks anyone has to deal with.
Just know you can & will manage it all, in your own time & in your own way. Remember there is a huge blood cancer family out there as well, finding others in the same situation is a big help and support. If there are no groups near you get creative and start one yourself. We all need someone to talk to, grizzel with, get the latest news and laugh with when coping with our condition.
Hope this insite helps and you all manage to get yourselves to a calmer place eventually. Took me 2yrs :stuck_out_tongue_winking_eye:

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Wow, Karen, I really went through all the all to familiar emotions during reading your brilliant time line around medical appointments. I also agree with all your thoughts and actions at the end. Thanks so, so much for taking the time to write this, you have helped me so much and I am sure it will also help others. How does your husband cope?

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You are welcome Erica, I have always felt it is better to share difficult things so the knowledge may help others realise they are not alone. That was the toughest time for me, you feel so alone at the start.
The husband has been a rock but finds it very difficult to discuss anything as he finds medical matters very hard to handle - best not spoken about. Still it meant I had to reach out to others instead which I think is better. It lightens the load for your nearest & dearest.

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Hi Karen, I have a similar husband so I know I have to go to good friends to get my emotional needs met. As you say that is the joy of sites like this community forum and also getting to know ourselves and our loved ones, but I can sometimes feel alone and especially when I was diagnosed and my emotions and fear and anxiety were on high alert. Thanks for your post and please, as I do, share what it really feels like for you on this forum.

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Hello @Karen-Ireland,

Thank you for sharing this Karan. I’m so pleased you’ve found ways of ‘lightening your load’ following your diagnosis. Its really valuable to hear about your experience because, as you mention, so many people talk about feeling alone when they are diagnosed. I hope our community is able to support you further and I’m sure your contribution will really help others to manage better as well.

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Hi there
Thank you so much for sharing all your thoughts and feelings on this roller coaster of a journey !
I was diagnosed nearly 2 years ago with stage 3 NHL and am also on watch and wait . It has been a tough journey to cope with and one that has been a real shock .
Everything you say is so familiar to me and it helps so much to know your feelings , although very hard to accept , are normal and shared by others .
2 years on I am beginning to get to grips a bit better with managing how I feel , but during and after appt times I find myself going right back to all the worry and sadness of being diagnosed . It’s hard to manage , but I now allow myself the time it takes to process these emotions . I hope as time goes on this will become easier , 2 years seems like a long time though !!!
I find reading others experiences really helps me in these times ( hence why I am on the forum today ) having just had a check up - I am ok , but back on the roller coaster again at the moment and struggling to get back up !
I find it very hard to talk to my family about this , as they are so relieved and happy there is no change ( as am I ) that I don’t want to burst their happy feeling , with telling them the worry and stress of the previous weeks has wiped me out emotionally . It takes a few weeks for me to pick myself up and get back to “normal “ again !
But I know I will get there , and I found the best way is to acknowledge the bad days and let them pass - then the good days will be back again . I am beginning slowly to learn to live with NHL and appreciate all the wonderful positives around me . I am finding the strength to fight it , and not let it define me . For every bad day I have 10 times more goods :grinning:
Thank you everyone for helping me realise I am not alone xxxx

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Hi Jo, just reading your post brought back my feelings of fear and worry and I was diagnosed in 2003 and I have been on watch and wait ever since. It is a tough journey, but as you say the good days get more and more, I think I am a very lucky girl. I also find my family cannot take my feelings and I am lucky to have some brilliant friends who will just listen and not try to take my feelings away from me. However I find it is only my blood cancer buddies who really, really understand. We might all have different stories but we seem to share the same fears, thoughts and feelings. Please don’t beat yourself up as your feelings seem very natural to me. I find it so upsetting and hurtful sometimes that my family cannot be there for me, do you?

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Hi Erica
Thank you for your reply . Yes it is so hard not being able to share things with the family . My husband is amazing and I know he finds it very hard sometimes , but sometimes chin up attitude isn’t always what we need ! Sometimes it’s just nice to be acknowledged and allowed to be sad , but I do understand that that can be very hard for him. I know that I also try too hard sometimes to be “strong “ when really I don’t have the energy to do so !
I guess living with cancer is always a learning curve ! I think as it’s 2 years since diagnosis I have been shocked how hard it still can be ! It sounds like such a long time but it still feels very hard to deal with . I suppose I hoped by now I would be finding it easier to watch and wait !
It is a comfort to share my feelings and know that my new “normal “ is normal !
Thank you for your kind words and support xx

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Hi Jo, yes, the chin up attitude is so difficult for me too, it hurts, but I realise it is not about me and that it is the other persons coping mechanism. I was brought up being told being strong in situations was a quality that would be admired by others, it is a hard mask to wear. Please keep sharing your honest feelings as I am sure so many of us relate to them.

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Hi, I’m sorry you are going throttle of this . I am in a similar situation as you I was diagnosed yesterday with essential thrombocythemia and have been put on watch and wait, I am on an aspirin a day at the moment but have been told if things change I will be put on hydroxurea drugs and if things stay stable until I’m 60 ( I’m 55 now) I will be put on it then. I am also feeling shocked and emotional at the moment and my tummy has been churning since yesterday when I was told I also feel very confused about being told I have cancer but with no treatment and trying to explain it to family and my friends so far has been exhausting but I’m hoping things will settle down soon and I will calm down and learn to live with this condition. Good luck on your journey :slightly_smiling_face:

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I’ve just read through everyone’s comments on this tonight and as being newly diagnosed with blood cancer everything you have all said rings true with the thoughts I’ve been having the last two days. I had my daughter and son in law over today and trying to explain to them what I have was so difficult they just don’t seem to get it that I’ve been told I have cancer but no treatment as yet, my daughter said that she looked on it as if she had as much chance of getting this as I have and that it’s no big deal really and one of my friends said but you’ll be fine because it isn’t cancer yet . This has been so hurtful to me as they just don’t understand , I get it that they are trying to be positive but I feel they are dismissing my worries and fears for my future, I even have my daughter the booklet my haematologist gave me for myself and family to read through and when they left I noticed she had left it on the arm of the chair . I’ve been feeling so down and emotional today … Sorry :neutral_face:

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