appointment

[janloveslife]

I have my second heamatology appointment tomorrow in Plymouth. Feeling upset and down today. Hope it goes ok. I know hardly anything about this CLL that I have and cant believe all the detail some people go into on here. Will I really get like that when I have had it for some time?

[Myrddin]

You need to learn enough to be able to talk to your consultant and help your GP understand the condition you have ( they often know very little). Then try and get on living.

If you want to learn more then the information is available here and on the main site, like understanding your bloods.

If you can attend a patients meeting you will meet others in the same situation and learn that there is life after diagnosis and should treatment be required there are a lot of new options on the way .

Hope all goes well at the next appointment. There are many here who know what you are going through so you are not alone.

[Cammie]

Jan

Firstly pick yourself up we are all routing for you!

Secondly patients vary in their need to understand this condition. Some simply get on with it leaving the knowledge to their medical team others like to learn about the condition so they can play a full part in their management of the condition.

It's early days for you, having had 16 years with it I guess my knowledge has grown and because I have an interest in deciding where we go if treatment (should I say when treatment) is needed again I can play a part and understand where I am going.

From your point of view at this time just ask the questions you need answering that will put your mind at rest.

I am sure things will go well tomorrow just think of it as a learning exercise.

Best wishes

Geoff

[Newdawn Administrator]

Hi Jan, good to hear from you.

You were only diagnosed 3 months ago and at that stage I was still a quivering wreck with little understanding of CLL. In fact I found a word I'd written in my notes in early 2012 in order to look it up later. That word was 'lymphocyte'. My GP had talked to me about my raised levels and I'd never previously heard of or given such things a thought. I was sure I'd heard of a Lymphocyte on Star Trek!

Everybody on here started like that unless they were previously medics or biochemists! So please don't fret about knowing and understanding all the terms because it's up to you to absorb as much as you want to. Some people happily go to their consults and put everything in their doctor's hands oblivious to levels, chromosomal deletions or understanding of treatment options. It doesn't appeal to me as a coping strategy and I sense it wouldn't appeal to you either but there's no right or wrong way. Which is why every question, no matter how rudimentary is totally valid on here.

Early consults after diagnosis are scary but they don't need to be. This is the time when the Consultant is getting a feel for your unique presentation. He'll want to be setting baselines to monitor progression and at this early stage, he won't be overly concerned. Ask for copies of your lab results...tell him you want to be an involved patient and learn about the condition. Ask any questions and share concerns. Tell him about the soreness in your left side that you previously posted about.

I'm sure all will go well and he'll tell you what level of monitoring will be done for you. Sometimes it's more frequent in the early stages. He should examine you and may even order an ultrasound on your spleen area if you report concerns.

Take someone with you especially if you'll be stressed about taking it all in. Then come out, have a nice treat and let us know how you got on!

Best wishes,

Newdawn

[virdieblue]

Knowledge is power!

[Newdawn Administrator in reply to virdieblue]

I couldn't agree more VaCooper but I have a friend with pancreatic cancer who tells me 'ignorance is bliss!'. It wouldn't do for me but they'll be many on here who feel unwilling or unable to absorb the technicalities.

Regards,

Newdawn

[AussieNeil Partner Administrator]

Hi Jan,

You are in the early stage of CLL and understandably overwhelmed at the wide range of topics on this site, because you have yet to understand to what extent your CLL is affecting you and hence what content is relevant to you now or likely to be relevant in the near future. It takes time - years (which we thankfully have) to get to that stage of understanding.

If you stay in the early stages of CLL or progress only slowly, then much of the detail may not be important to you - particularly if you get a supportive specialist and primary care doctor. You also need to keep in mind that our community is likely to have far more members that are being impacted by their CLL - hence their active involvement here, than those that are able to keep living their lives largely unchanged.

Some of us (self included) have had to take serious interest in our CLL due to the significant impact it has had on our lives, so that we know what to do to minimise further inroads into our quality of life. Unfortunately, CLL is a fairly rare cancer, so primary care doctors are unlikely to be knowledgeable about the specifics of how CLL affects us. In the early stages we only get to see our specialists infrequently - perhaps just once or twice a year and then we only have 10 - 20 minutes with them, most of which is taken up with a routine examination and a check on how we've been going health wise since our last appointment, leaving very little time to discuss the inevitable questions we have. Hence the value of belonging to this community where we can pass on what we've learnt from our experiences, hopefully saving others from the painful learning curve we've been through.

While we hope you don't need to 'get like that', i.e. get into the detail of living with CLL, a good way to improve your chances keeping CLL a minor influence on your life is by seeing what tips you can apply to yourself from PaulaS's 3 part series on coping strategies for living with CLL, starting here:

healthunlocked.com/cllsuppo...

I'm sure your haematology visit will go well (but see if you can have someone with you to help you remember what was discussed). If after your meeting, you have some unanswered questions or need answers clarified or expanded, just ask about it in another post and I'm sure someone will be able to help.

Neil

[janloveslife]

Thankyou all for your kind words and helpful advice. I will let you know how I get on.

[Cllcanada Top Poster CURE Hero]

If you have a phone that can record audio, it is very helpful to ask the doctor, if you may record the appointment, and review it later... much is missed in early appointments, ....

failing that have someone with you to take notes... a second pair of ears is useful...

It will go fine... anything you don't understand, ask the doctor to explain... don,t be afraid to do that... doctors often take a lot for granted...

~chris

[saintjohn]

Good luck Jan,hope all goes really well for you

Regards

John x

[Peggy4]

Hi Jan. Firstly, there is no need at all to get bogged down in the mechanics of this cancer we have unless you want to. Some of us, myself being one, like to have some knowledge and others prefer to leave it to the professionals, there is no right or wrong. You are naturally feeling overwhelmed by it all and frightened, the same as the rest of us were(and still are some of the time) It's good to have a little knowledge I feel so that the fright does not completely overtake us. The first print out I was given at my Dr's surgery was so blunt and to the point that I was petrified. Personally, I like to know a little so that when/if the next step comes, I am a little more prepared as to what to expect. It's the not knowing that would worry me more. Don't look too far ahead and try not to spoil today by worrying about tomorrow. You are not alone, remember that. Peggy.

[Bubnojay]

Hi janloveslife,

I was looking at some of the replies you and other newly diagnosed people have received, and it reminds me of something I want to share with you. I look at the responses newly diagnosed people receive and I can remember when these very people first posted themselves, panicked, scared and afraid as we all were when we are first told we have a leukemia, and the frequent comment we hear that its a better cancer to have, reassures us not one bit. We have all been there.

So here you are among friends who do understand, and best advice I can give is breath deeply and don't even try to take on board all the information you can find here, it will give you a serious headache, and it is too much to take in when new to CLL.

Knowledge is gained slowly bit by bit and you too will one day be reassuring others.

Steer cleer of googling for answers, then you won't frighten yourself. Just read and take on board the bits that matter to you, ask for printouts although initially they will seem like double dutch. Over time your knowledge will build and so many helpful people here to answer any questions you need answers to.

I see our 10 yr since diagnosis and no treatment members writing today, I am 5 years post diagnosis so cannot join their club yet, but we will get there.

Do let us know how you get on.

Very best wishes

Bubnjay1

[sumok]

sending good wishes and and supportive thoughts!

different people want to delve to different levels of detail - but it is good to get a handle on a few things, as mentioned by others here. take those intimidatingly detailed responses as a guide for some of the things you want to know. and trust that none of us had any of that to start with, it was learned over time, and you will do so also.

[janloveslife]

Feeling happy today. Had a good appointment. No deterioration in my levels, in fact my lymphocites had gone down very slightly! I have to have a scan on my spleen because of the pain I have been experienced but they are not concerned. Wont have anymore blood taken again for another three months. So relieved and happy today.

Thanks for everyones kind thoughts.

xx

[MsLockYourPosts Passed Volunteer]

I'm glad things went so well. I laughed at New Dawn's comment about finding a note with a word she had written down. I have recently been clearing out old clutter, some of which is the original booklets, etc. that I received when I was first diagnosed (April 2003). There are all kinds of notes, underlined sections with question marks, medical terms. The ones that apply to me I now more or less understand. I will never have a great scientific mind. I used to read and reread the scientific articles posted by people like Chris, download them, and reread them a couple of more times, thinking that I had to understand every word.

I also now know which things don't apply to my particular case, and have a reasonable familiarity with treatments - old, new and approved, and in trials - and where to go if I want more information about one. When I was diagnosed Campath was the promising drug. It now is in the ancient history section - still used for very specific cases, but not the norm as we were told it would be at the first CLL presentation I went to. You should have seen me sitting in the very back corner of the room terrified and totally confused.

The most important thing I've learned is to find doctors who know what they are doing and who are willing to work as a team. I've dumped several over the years and dread the process of having to replace anyone on my current team. My hematologist moved away Jan. 1, but for once, I already knew the doctor who is taking over my case and feel totally comfortable with him.

Keep us posted. You will find your comfort level, as far as how much you need to know and understand.

[janloveslife]

Thankyou for those kind words, at the moment it's all new to me and a mystery. It's really interesting to hear other folks stories on herex