Dreading blood tests

[Kokobean]

My husband was diagnosed 3 years ago. He is in waiting mode, but every blood test sets me on edge waiting for the day our life changes. Any thoughts?

[Cammie]

Just think about it!

No matter how much you worry it won’t change the time when treatment is necessary.

In fact although you may not have said anything to your husband about your fears he will, no doubt, pick up the signals subconsciously and if this happens he too will become stressed. It’s a known fact that stress can affect the onset of progression.

You should be concentrating on living the best life you can together whilst in Watch and wait.

Humans are like magnets with a positive and negative polarity.

If you are negative you will attract negative things!

Being positive will attract the positive in life!

It works in all aspects of life.

Just think about the negative people you know. Are you pleased to see them or do you rue the day when they appear?

What about those good friends who are full of life always looking on the bright side? Are they more successful? Do they have a larger number of friends than Mr Grumpy?

The same karma works with us with cll.

Why make yourself miserable worrying about something you can’t completely control?

Live every minute !

Enjoy your time together support him now and in the future!

He will thank you for it!

[BCTexas in reply to Cammie]

Excellent response. And so very true. I can tell you first hand that positive thinking is very important to your health.. Especially when you have a compromised immune system.

Since the time I was diagnosed I haven't seen my wife cry once. I told her this has helped me because it shows me the positive side and won't allow the negative to creep in.

[Newdawn Administrator]

Hi Kokobean,

I think we all share the anticipatory dread of each consult and there’s something quite natural about that but the one thing I’ve learned from nearly 6 yrs on W&W is that CLL gives us time to adjust to changes. The numbers game is only part of it and there isn’t that one consult when things change so dramatically that day that the specialist rushes us off to a treatment room. It’s about monitoring and trends so there may be a time when the doc says, ‘such an such a level is a bit lower or higher’ so we’ll keep an eye on that’ or perhaps there’s an infection or change that accounts for a variation on that occasion. Yes, it’s true that if we are lucky, we see the changes taking place and can psychologically prepare for them. The treatment discussion starts but it’s part of a process not a catastrophic event to anticipate each time you go.

My advice would be to arrange something pleasant and relaxing for afterwards even if it’s just a nice coffee and cake. See it as an ongoing process not an immediate threat. Your husband is still the same person coming out of the consult as he was going in. Support each other, see each challenge in bite size terms and view this challenge as something you’ll see off and beat between you. Because you can and you will.

But we all understand...I’ve just noticed it’s your first post to the community too so a warm welcome and well done on posting your fears so honestly.

Best wishes,

Newdawn

[cllady01 Former Volunteer]

Koko, has there been any event in the three years that has caused you to be worried about the next blood test?

How often are your husband's appointments? Do you get copies of the tests so you can compare and see that things are going well?

Do you know what his CLL profile is so you can read some of the posts that may show you how others are coping with a similar profile?

Just trying to give you some "homework" so you can feel a part of the situation and "know" some things rather than worry.

We all have gone through periods of worrying without having a specific thing to worry about, so you aren't odd in that, but if you can begin to take an active interest in the specifics of CLL and maybe make a chart to reference each appt. and make notes to ask the Dr any questions you have. Also, ask any questions you have here.

[Kokobean in reply to cllady01]

Thank you all for your help and support. He had been relatively stable until maybe not quite a year ago. His lymphocyte ABS has shot up a couple of times and we are back to every 4 months instead of six. He also has RA and is on methotrexate and Enbrel which complicates things. I try not to show that I am anxious.

[closh]

Kokobean - I understand the worry of getting worsening results from each consultation - I did that for a bit over two years before starting treatment. Then when I started treatment, it wasn't bad at all! I just take a couple of pills each day and feel fine. I'm off to the gym at lunchtime with another CLL patient in treatment ( a different type) who also just pops some pills and feels fine. In a couple of weeks, I'm off to Japan skiing for 2 weeks - my friend's off on a fishing expedition. We're both fit and well.

My point from all of this is that what you are dreading, is likely not too bad at all. When your husband does need treatment, it isn't like some of the horrible treatments we see in other cancer patients. When I attend the cancer centre for my 3 monthly check up and to collect medication, I feel out of place and think that a lot of my early worry was misplaced (although I don't know how it would be possible not to worry at that stage).

If you're both keeping well (good food, exercise, enough sleep and a positive attitude) and have a good CLL expert for advice, that's all you can do and all you need to do. Come treatment time, you can expect that life will carry on just fine.

Graham

[grace2017 in reply to closh]

Closh, Hi my name is Grace. I just read this post and wanted to say I wish I knew you in person. This was so encouraging to read. I do worry myself. My Dad has CLL was first diagnosed in 2014 he had B cell Lymphoma. Such a scary thing and was in treatment for 6 months. He now is in watch and wait. I know this post was for someone else but, I want you to know how much this helps me. My Dad has other health issues and its hard. Thank you for sharing. I love all of you wonderful people. I don't feel so alone.

[MsLockYourPosts Passed Volunteer]

I'm not sure where you are, but you might ask about a support group for caregivers, or for patients and caregivers. If you post your general location others here might be able to help. You might want to "lock" that post so it and the replies don't show up on google (go to the bottom and click on community only). You can also lock anything already posted by clicking on the v, then edit.

It seems that with most couples one is the worrier / researcher - sometimes the patient and sometimes the partner. Your fears are not unusual. Don't be afraid to look for help for yourself dealing with this!

[cllady01 Former Volunteer]

Koko, it sounds as if your CLL Dr. (specialist?) is watching the blood levels closely. They do tend to go up and down and it is the long-term trend that is most important. If the RA acts up, some of the blood levels will be high also.

If your CLL Specialist is aware of all your husband's other medications, and receives regular reports from his other Drs., you can begin to relax some as the Dr. seems to be seeing him in relation to his concern--changing from 6 to 4 months is indicative of his careful watching.

As Closh has related, while treatment is not something any of us look forward to, it often seems to be that the anticipation is worse than the journey.

Your care and concern for your husband is important, but you are not alone and have the Drs. to carry some of that with you both.

Also any questions you have, if you have read many of the posts on this site, you will see there are others here ready and willing to share.

I hope you have someone you can confide in with the worry you have experienced. It helps to share aloud (or you might find writing in a daily diary form helpful) what your mind keeps whirling around. Putting the worry out into the light of day, can help you to sort and, hopefully, to see what you can do beyond the worry.

[pollyg2016]

Hi Kokobean, I completely empathise with your situation. I have the opposite case. It's my husband who has Lymphomia and every month just before his blood tests are due to be taken he becomes quiet and distant. I try my best to keep him positive and upbeat but it is hard. I try to stay positive because I don't want to bring him down. He is currently taking Ibutinib and is doing wonderfully on it. The doctors are pleased, everything is moving in the right direction. I fear that with his negative thought and could bring on stress. What we both do is Yoga which has been a great help in calming the mind. If you can find or do something that can calm your mind I would really recommend it. Even if it's just sitting in a room for 10min meditating can help. Please forget that it not just affect the person who has cancer but also partners, wives and other family members. To help both of you, stay positive, breath deeply and calm your mind. All the best for both of you.

[Kokobean in reply to pollyg2016]

I am encouraged by all the help and by those who have had treatment and success with the results. I am typically an optimist so feeling anxious is kind of new to me. I also am the researcher so I know a lot more than he does, but sometimes all that info provokes anxiety. Thanks again for all the care and help. I will definitely be using it.

[Dawn-Marie]

I try not to think so much about it. Which is hard I know, I go in every 4 months next check up in May. I talk to God a lot lol! When I am afraid I express this to him. I get a calming effect and go forward. I have enjoyed this site on the computer to gain knowledge about cll. But sometimes it upsets me to have more information. So I don’t have the answer for you. We need support and it makes me feel I am not alone with this disease.

Thanks

Dawn-Marie

[Glees]

I know how hard it is to be a caregiver and not anticipate trouble, but I want to really encourage you to simply live! I always try to plan something special just before and the day of our appointments so that we view it more as an outing and date day. We are in the middle of treatment now, but we had so many good appointments and I am so thankful for so much life lived and enjoyed. We have always been open with our friends and family about appointment days and they have graciously supported us and covered us with pray on each of those days and especially do now that we are in treatment. Some things we just can’t do on our own and knowing God cares about us makes a huge difference to us. Praying that you and your husband can treasure and take joy in the good health you have now.

[Kokobean in reply to Glees]

Thank you so much for your encouragement. We too are people of faith in Jesus,. I haven’t shared with very many people close to me about these fears so I need to do that so they can pray. Making it a date and doing something special is a great idea.

[Firefly14]

Hi Kokobean,

I think it’s totally understandable to be worried. I get really worried before my test results too. (Im guessing my husband worries too but he’s not one to mention it!) We’re only human. I find if people say “oh but you’re doing great why are you worried” or (the one that gets me the most) “just stay positive” for me that feels like more pressure to try to make myself be ok and not worry!! I know we all deal with things differently but for me the best thing to to is to tell yourself it’s ok to be worried, it’s natural to worry, that there are good days and bad days and it’s understandable that you have bad days... acknowledge how you feel and that it’s ok to feel sad, worried, anxious etc.

I definitely agree it’s nice to have something nice planned for after. I always take the day of my appointments off work and do something nice for myself - your husband is lucky that you are there for him and maybe you could do something nice together - a walk, a meal, whatever works for you guys.

I think the worry gets less as time goes on and you get used to this crazy rollercoaster.

Wishing you all the best

Firefly x

[Firefly14]

Ps counselling really helps me!!! Think about it x