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

Hi, I am replying to both your posts above, I have already just replied to another one. I am so glad you are posting. You were diagnosed only a few hours ago, I cannot imagine what you are going through right now, it brings my diagnosis thoughts and feelings in 2003, aged 53 yrs, straight back. I also feel sick and I still get a yukky feeling in my stomach every time a medical appointment is due. I have been a very lucky girl and I have never had treatment and I am still on just monitoring (watch and wait). I have Chronic Lymphocytic Leukaemia. I, my family, friends and work could not get our heads round me having blood cancer, but no treatment, just monitoring (watch and wait). Also, without treatment, I had to learn to manage the symptoms I was diagnosed with, it took a long time. I certainly could not explain to others what I did not understand myself. Yes, family, friends and work all made comments that really, really hurt me, but looking back I was super sensitive emotionally for a very long time and they just didn’t know what to say, and even now cannot be there for me sometimes. I remember feeling so let down by my family and friends, I really do wish this community forum and the Bloodwise support line (details above) were available then. You must be so exhausted and I expect finding it so difficult to sleep. I remember my washing machine of a head going continuously with fears, thoughts and feelings and going into overdrive at night, the darkest hour is just before dawn and all that. I found my body also coped at diagnosis but then it had to let go at some point and then the fears and emotions came out. Thank you for being so supportive to others whilst you are going through so much emotionally and physically yourself. Please keep posting we are all here for you.

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Erica
Thank you so much for your reply it really means a lot to know there are people on this forum that understand where I am coming from emotionally, I have been feeling a bit better today but sometimes the bad thoughts and feelings keep popping up and as I am at home alone during the day I have a lot of time on my hands to overthink things but I’m trying to stay positive. Tuesday and yesterday were the worst days for me I think I cried buckets . I know my family like yours are trying to understand my condition but as you say it’s hard to get your head around telling people you have a type of cancer but with no treatment as yet , you get the feeling they don’t really believe you somehow but I have decided I am going to consentrate on myself and let everyone else think what they like. I’m sorry you are going through this as well I’m not sure what type of blood cancer it is you have but I wish you well with it and hope you can keep staying as well as you have been :blush:

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Hello all
I have been catching up reading all your posts. I agree totally with everything.
These issues are as much about the physiological impact as the physical problem. Plenty of systems in place for our medical needs but little for the mental needs. There is a process to go through and we all need support to handle it. Family & friends are often in shock or denial themselves, we are in shock, panicked and desperate for information and solutions. The washing machine heads are in full spin the nights and days are full of stress and worry. We are robbed of our normal happy lives until we manage to find others to help us through. No one can really help or understand like a fellow patient but try to remember that they too have to handle the ups and downs, the panics and worries, the anger, the frustration’s and the sadness. Sadly this is not something that really ever goes away completly you just get better at dealing with it. You can get some help to do that from organisations like ‘Cancer Focus’ or Maggie centres as well as tge online forums. Its a bit like bereavement counselling but also another opportunity to meet others in the same boat. Although scary at first, reaching out to others for help and support is a positive and benefical move. I have made so many new friends creating my own lymphoma What’s App Group of pals and joining specialist Facebook groups.
Like any trauma there is a human emotional process to go through. Shock, sadness, disbelief, anger, denial etc you just need to learn to understand, accept and eventually live happily with the new you. You develop coping stratagies to managed the tough times which will come and go along the road. You learn to be nicer to yourself - l give myself permission to have duvet days and do only what I want.
Some folk have an intense fast and scary ride with their cancers but can eventually achive complete remission and move on with their lives.
Us indolent type just have to learn to handle being on a long very slow journey where we just watch for the occasional stop off for some treatment and hoping it does not happen too often. That journey never really never ends we, just adjust to it.
Aim to get passed the emotional impact as soon as you can. Seek some proffessional support to do that if its available and if you feel you need it - I tried a couple of sessions but felt I was teaching tgem more than I was learning. :joy: The 'New You is not that bad once you get there. Don’t expect too much from family & friends they are either having just as much of a problem as you, suffer from ostrich syndrome, too much positivity or selfishness.
Humans…what a complexed animal we are :grin:

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Hi Karen, all I can say is I agree with everything you have said and you worded it so much better than I could and the ending is so, so true that we are complex beings and that is why it is such a pity some medics don’t and don’t have time to look at us holistically. My notes are so thick or long on line there just isn’t time !!! but so many of my complaints are all linked like the CLL and ongoing shingles. My new me is actually a far more insightful person who looks after my physical and emotional needs and has lots of fun and adventures, what your ‘new me’ like?

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Hi erica
My 'New Me" is currently is doing its very best to ignore the fact I have a blood cancer. Feeling a lot better psychologically for that. Just have a sensible awareness that I have it but as we don’t want treatment until it becomes a bother and its very unlikely to cause anything serious, why waste time & energy on it. Thats just wasting your life. Main principle for me is watch for lumps & bumps or eye issues. Inform all medical people you see that you have it especially if you need any other procedures. Keep in touch with the lastest thoughts on your type and make best efforts to chill out and enjoy life. Feel lucky that my diagnosis was no where near as bad as some peoples is, yet most manage to pull through eventually. The human body is quite an amazing thing even when it goes off the rails a bit. The mind on the other hand can be a tricky fellow to handle so requires a firm hand :blush:

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Hi New Me Karen, it sounds good to me !!!

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Gosh, I have joined lots of support groups but found this so interesting and very helpful. I’m 43 and was diagnosed with follicular lymphoma in January 2017, initially thought just to be in the parotid gland so I recieved radiotherapy. During the next scan an area in the abdomen showed up so since September 2017 I’ve been on watch and wait.
As much as I’m trying to get my head around it, someone like me (who likes to be in control) is really struggling! It’s very hard to change your mindset and see this as a positive thing (even though I remind myself constantly that it is) when all you want to is get rid of it.
Through counselling I’m trying to understand how to do this. What scares me is that this is the new normal and I have to get used to that without worrying about what might be, when I might need to tell the children etc. Easier said than done but I’m determined.
It’s just about not giving yourself a hard time and taking it slow. It’s life changing and so unexpected and I’m beginning to realise it’s going to take time and that’s ok X

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Hi Nichola, yes, I certainly like to be in control. Just reading your post brought all those feelings including fear and anxiety and my washing machine of a head whirring round with all those thoughts the what if, what might be, when, how etc. etc. and that yukky feeling of apprehension in my stomach. I have CLL and I was diagnosed in 2003 and I have been a very lucky girl (and I mean that) to have been on watch and wait ever since. I am now 68 yrs old. Over the years those horrible, scary thoughts and feelings have subsided to a manageable level, but whizz back when medical appointments are due. I know realise, although I should have before, that I never knew what tomorrow would bring. Be kind to yourself, I think it is only that your body has had a life changing shock and is still on high alert and that takes a long time to subside. So many people will relate to your post. How old are your children and what have you told them?

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Hi Erica,

It’s nice to hear that I’m not the only one with these thoughts! It can be very lonely at times. You have done amazingly well but I imagine that worry is always there to some extent.
It’s very hard with the children. When I was first diagnosed the radiotherapy was given with the aim to cure so I didn’t go into too much detail. Just said some nasty cells needed to be zapped. I think the excision biopsy was more scary for them as there was a large cut on my face. The reality of them seeing it in my abdomen a few months later was a complete shock and I’ve thought of nothing more of when to tell them. I have a PET scan in March so will see what that brings. It’s always on my mind as I don’t want to worry them unnecessarily but on the other hand don’t want to hit them with it when more scary treatment might be needed.
Lymphoma action have just released a video explaining to children which I thought was amazing and will use as and when I need to.
It’s been great reading all the comments on here and talking to people just like you! Think I might be a regular contributor - won’t be able to get rid of me :joy:X

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Hi Nichola, I have found with children that the important thing has been to keep communication open and tell them what is going on in an age appropriate way and ask them what they are thinking and feeling and ask them if they have any questions. I personally think children sense when there is something amiss and their imaginings are far worse than knowing. We don’t want to get rid of you and please let us know how you are getting on.

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Hi Nicola
Its a very hard thing to get your head around but for the slow growers the idea is, the fewer treatments you have the better the long term outcome because at the moment any treatment can only manage not cure you and tge treatments can take their toll on you - the path of ever deminishing return. However all the ideas one has of cancertreatment is the quicker all is seen to the better. Education is the key, understand your type of lymphoma, there are over 60 different ones and all behave differently and need to be handled differently. Buddy up with other follicular patients if possible they have all the lastest on your type. Follicular is a big group so you should find lots of pals. Mine is very rare, I’ve only managed to link up with a few others world wide, via a facebook group, only two others in the UK and me on N Ireland but I found them all by reaching out, going to conferences & workshops and started a little Whats App group for those I met. Welcome to the Lymphoma World, you may have a very annoying lodger but you have many more new friends :grin:

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Hi Nicola, my thoughts are that most slow growing blood cancers do not follow the acceptable routes of other types of cancers and I am more than happy to stay on watch and wait for as long as possible for the reasons you give above but also because I have been told that I could get very immune to current treatment’s and as you say all treatments take their toll emotionally and physically. I absolutely love your last sentence, brilliant, please keep posting.

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Hi, really sorry that should have been ‘Hi Karen’.

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Hello @Karen-Ireland,

Thank you for offering such wonderful advice to another member on the forum. You mentioned a little bit about finding others who have a similar experience with you in terms of rare blood cancers. Are they on watch and wait as well and how did you feel finding others who have a similar blood cancer as you?

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Hello Joshua
Beong told you have a blood cancer is a tough thing to hear. It rocks even the strongest of us. Then to learn it is currently incurable is a second blow. The third blow is being told that despite the above you will not be treated until it is necessary, because all you are thinking is ’ this has to be treated and now’!! The fourth blow comes when you realise that nobody is even researching your type because it is so rare that insifficient numbers make trials a non starter.
You feel so alone isolated and abandoned. Your mental state suffers and you feel that no one can help you.
Luckily I am a problem solver. I could not accept my situation. I could not be the only person on the planet that had my type. So I set about hunting on the internet for information and connectivity to others enduring the same as me. I also created a little leaflet to put into surgeries and clinics looking to build a local friendship group. I had to do something positive.
Finding others dealing with the same subtype and issues was a wonderful feeling. You instantly no longer feel alone. You can chat openly with each other because you all go through the same feelings and have to deal with the same shock, horror and devastation. But the best thing is you get to exchange knowledge and experiences. You can learn how your type is being handled all across the world. Find out what works what doesn’t and the side effects.
For my type - Primary Cutaneous Follicular Lymphoma which is a slow growing B cell type. Watch and wait is the order of the day here in the UK with radiation when symptoms become a problem but in the US they have different approaches.
By linking and chatting you learn and feel more empowered. With knowledge and understanding you are able to put things into perspective. Feel less in the dark, worry and stress less. Which is a really good thing seeing as there have been medical studies done on the source triggers which suggest that stress plays a big part.
I also found others who had lived successfull with my type for nearly 30yrs. I think that was the best news.
Most in my group are on watch and wait permantly. Running at about 75-80% normality but suffering from the mental strain of having a long term chronic condition that won’t kill you so no one is really interested in it. Stuck between GP’s who wont deal with you because its cancer and clinics that are not really suitable for your type of cancer. Life constrained but feeling lucky that you don’t have to go through the treatment that so many others have to endure.
We just have to do our best to forget it as much as possible until it causes a problem or we would have no life at all.
Karen

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Gosh, Karen, your post was absolutely brilliant and ‘just say it as it is’ but from such a lovely heart felt personal viewpoint and I think it will help so many of us. I have one of the commonest blood cancers, Chronic Lymphocytic Leukaemia, and have been on watch and wait for 15 yrs and you described watch and wait far better that I could. Please keep posting because you have a wonderful way with words that we can all relate to and keep producing your leaflets and send them everywhere you can think of.

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Karen, your post is really wonderful and will be really helpful and validating to those on watch & wait, thank you so much for sharing. How is your leaflet making & sharing going?

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Good evening all. I totally forget that I posted on this thread a couple of years ago. It is such an interesting topic and one I enjoyed looking back over. It made me reflect a lot on if the watching and waiting had become more manageable. So, has it? I suppose I am managing better. I don’t think I’m at the 75% as @Karen-Ireland talked about, more at 50% I’d say which is an improvement on when I first posted just over two years ago - that’s got to be a positive hasn’t it! I feel so much better when I can talk about it and sometimes that’s hard to do. Counselling really helped me and I think it still could. However, do you think It gets to a point when you have to try and manage on your own? Like all off us, the current situation heightens my worry a lot. I’m tearful, anxious and struggle with sleep. Not that anybody else would notice because I’m great at plodding on, so I suppose if I’m getting through each day I’m managing. I know that follicular lymphoma could go for years without being treated. My biggest worry is what if it doesn’t? Is working my bones off what I want to be doing? Even though I love my job do I need a new challenge, because if anything changes am I going to wish I done more. I grateful I’ve been on watch and wait for so long but worry each year might mean getting nearer to treatment. Just writing this makes me realise I always think of what the outcome could be in a negative way. It’s so hard to change those thought patterns. @Erica, how do you find you manage now?
As you can tell my minds running in overdrive tonight. In summary I think I have weeks where I manage really well and a week like this one when I don’t. I find it so hard to explain and really not sure others understand. Phew - feel better now that’s off my chest. Thanks for letting me rant!

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Oh @Nichola75, I just agree with your whole post.
I think about ‘watch and wait’ or ‘active monitoring’ more practically now and less worrying emotionally, however I do not like being out of control.
I am more emotional since diagnosis and especially during Covid my emotions have been all over the place, in a way I am out of control again.
I cry at the least thing.
I realise I do not deal with what emotionally, physically and practically stresses me well so I have also been taking steps to de-clutter my life.
Going back to watch and wait I have realised how lucky I am to still be on it and all the time new treatments and ways of treating, more targeted and less aggressively, are becoming available.