Hurt and puzzled

[Safta]

Don't you just hate it when close friends discover that you have CLL and start avoiding you like you have some sort of infectious disease?

I understand they feel awkward, but hey, we were friends....

[Oleboyredw-uk]

I agree with your view, which I why I've tended not to tell anyone, and have a very tight control of who I tell what to.

I did share quite a lot of info with friends who had come to stay and it became obvious afterwards that one of them had difficulty with what I was saying, however they have stuck with us.

There are one I've avoided telling for a number of reasons.

The thing is news like this is a 'behaviour changer' in my opinion ( my words, probably a correct term but I never tried to find it ), and I put in in a group that includes marriage, divorce and death, all which can change people's behaviour towards someone.

Stick with your good friends, you'll know who they are and they'll give you what you need from friendships.

Rob

[Safta]

and we will never know whether we ourselves are going through a 'behaviour change'. The moment I realized that I will not live to a ripe old age, something did change inside me, fear mixed with relief. Other factors come to mind too.

Most of my friends are wonderful, my family is terrific, just one dear friend has totally avoided me for a year now.

[sparkler]

It must be very sad for you Safta, that one close friend has avoided you since finding out about your CLL and I believe things could be at play here that Taliesin talks about in his blog yesterday - people may be afraid to face the reality of their own mortality or also to face the reality that they might possibly get cancer too.

As discussed in Newdawn's blog, some simply do not know how to react and so for them it's easier to avoid you.

I think we do also go through a "behaviour change". Yesterday I answered Newdawn's blog and talked about friends and their reactions to my CLL. I have many good friends who I have known for a long time and although most do not ask about my health (we don't often meet up, as they don't live locally) I am able to have a really good time with when we do get together but we don't talk about my health.

This could be as much down to me not wanting to, as at those times I like to try to be the person I was before dx,(funloving, lively, independent) and choose not to bring up the CLL topic when we meet. It could be that if I chose to talk about it, they would surprise me and be very supportive and I think some would be.

I am a rather like Newdawn described herself, more comfortable with and used to being the supporter rather than the supported. Perhaps if I were able to reach out to more friends and ask for their support, then they would be there for me.... but maybe not..... the fear of further rejection maybe prevents me or maybe I just don't want to be seen as needing something from them....

Warm wishes

sparkler x

[Safta]

I really enjoy your posts! Shame there is no 'like' feature on the blog.

I told very few people, I live in a small village and am very well known here (active in local politics etc). The last thing I want is people refraining from asking me to take something on because I am 'ill'. So I told no-one here, in fact it is hard having a secret, almost a burden. But it is better than pity any day

[MarkTC]

I have to pick you up on your statement "I realized that I will not live to a ripe old age".

There is no cure at the moment I conceed, but the medical advances and technology being employed means that there is a very real chance of anybody in the early stages of CLL at this moment in time, being able to achieve a ripe old age.

Reconcile your thoughts, we all have had to, but never give up to fatality. I am not suggesting for a moment that you may have been negative around your freinds in the early diagnosis stage , but if maybe they sensed your fear and some negativity maybe this has sent them off hiding?

Try meeting up with them again, the New Year is coming soon, a great chance to wipe the slate clean and start afresh.

[sparkler in reply to MarkTC]

I was really positive when I first told people of my diagnosis but the very word "Leukaemia" was enough to send some into hiding; indeed it took a long time for me to actually believe and accept I had it myself.

When I spent time with a Psychologist (as mentioned in the other thread) it was not for Depression but to try and come to terms with the situation myself and to attempt to understand the response (or lack of it) from others.

I am not sure that the way in which we tell people, necessarily makes any difference to how they will react... this is just my take on things though.

sparkler x

[Gartshore in reply to MarkTC]

Thank you, for your uplifting words!

[Hidden in reply to MarkTC]

hi thank u for comment

[HAIRBEAR_UK Founder Admin]

Very true the word leukaemia does drum up traumatic images that unfortunately make the news, I remember when telling my kids about my diagnosis I told them I had a blood condition. This explained my mental distraction and the need for increased hygiene, why sometimes I don't do Dad things.

However the psychological impact of diagnosis and early CLL is well documented. Negative vibes can stimulate negative responses. Interesting thread. I hadn't thought about it that way. I know we should n't be too hard on others and yes New Years Eve is fast approaching. I think I will make the effort to go seek a few out that I have let drift off or have retreated from. Thank you.

nhs.uk/Conditions/leukaemia...

the recent paper by the HERG study group highlights some of this, there is an article from Chaya in an earlier blog I posted that expands on a lot of this.

Incurable, invisible and inconclusive: watchful waiting for chronic lymphocytic leukaemia and implications for doctor–patient communication. You can download the full PDF here:

herg.org.uk/publication...

Nick

[Safta in reply to HAIRBEAR_UK]

couldn't open the link...

[sparkler in reply to HAIRBEAR_UK]

I know what you're saying Nick but when I told my kids (albeit adult ones) that I had a blood disorder, my son said "is it cancer Mum?".... I had to be honest!

When I was diagnosed, I was told "it's nothing to worry about. Just forget about it and get on with your life.... enjoy every day"..... I haven't found that so easy to do.

sparkler x

[HAIRBEAR_UK Founder Admin]

Try this it should take you to the full PDF download:

herg.org.uk/publications/20...

Here’s Chaya Venkat’s colourful editorial of the paper.

updates.clltopics.org/4085-...

[Safta in reply to HAIRBEAR_UK]

amazing, I could have written this myself (if I were a better writer). The observations are spot on, I kept reading this and wondering whether Chaya knew me.

A lot of the time I simply don't let it get to me, for instance I have a feeling that I will get obsessed by this site, feel the need to react to everything written instead of being involved in my previous day to day obsessions!

[HAIRBEAR_UK Founder Admin]

Yes leukaemia does scare, I had to be very careful as my kids were just ten and 13 and there was a kid on their Favourite TV program at the time, Tracy Beaker I think, the girl got leukaemia not sure if she made it. Over the last three years the kids are now teens and know, but it was delicate. I am still going to seek out the few I have become separated from for whatever reason. Maybe I now think a little differently?

I am banking on living a long life , with a few more bumps in the road. (they now want to go to Oxford or Cambridge, LOL)

As for friends in the general population, I have less, have I ostracised myself, circumstances changed, no longer hanging out with fellow builders, don’t drink, don’t smoke, don’t have as much money? They probably would find me boring now? Some friends have got whisked of to wed, other’s kids have now gone to different secondary schools. In hindsite I cannot pin down their departures to my diagnosis.

However looking back I was very sensitive to change as so much of it seemed to be going on. Did I expect too much of them?

[MarkTC]

Hairbear. No not at all, it's just for a while after the shock the world needs to revolve around you for a bit. It's all about getting the perspective back and with my partner that has been very easy. My feeling is good friends, the ones you really need, stay. The waysiders go.

I have never boasted a wealth of friends, I have a few close good ones and guess what, they are all still around and all supportive. That's not luck, thats freindship.

I liked your comments about not drinking and smoking as much and basically pubbing it, I have curtailed my drinking somewhat, never smoked, and my food intake has taken a strange divergence to more fruit and veg lol, must be more psychology there I think.

I thought i'd leave you with an example of my circle of freinds. In the summer, when you can catch it, we have many bbq's. Last summer at one particular, we had all been at the drinks for quite sometime and I said, "theres a 1 in 5 probability one of us here will get cancer". They all looked at me, I tipped my glass and folllowed, "just letting you know I took one for the team". They turned the garden hose on me and got the kids to make a t-shirt that said, No1 dickhead.

[Safta]

Dear MarkTC

Do send us all a photo of you wearing the t-shirt...

[Newdawn Administrator]

Nice one MarkTC, love it! Lol

Newdawn

[Hidden]

Hi everybody...I joined the site a few days ago but this is the first time I've contributed. This is a subject that's really affecting me at the moment (I spoke to Newdawn about it recently..hi, Newdawn, finally done it!!) I was diagnosed two years ago but made the decision, as a lot of you on here have, not to tell many people. However, my husband and I decided to tell a couple we were extremely close to...this is a couple we socialised with frequently, had family days with - in short, friends we thought we'd have forever. After months of excuses from them, as to why all that suddenly stopped, we were told they "couldn't cope" with me having cancer...It has affected me deeply and I have no idea how to get out of this "downer" I am feeling just now...

[Safta]

I think certain people just can't cope and we have to accept it. I find it very similar with divorce, when a friend gets divorced, there is an awkwardness that some people can't get over. On the one hand it is part of life, on the other hand there is no sure vocabulary for handling the situation. (I know this from friends who were very hurt when they were 'abandoned' by close friends after divorce). I have even seen this ridiculous attitude when someone got laid off work, other men particularly seemed to fumble with it.

People are what they are, some rise to the occasion, others just crumple.

[Newdawn Administrator]

Hi Granof2, great to see you here. Sad and angry at the subject you describe though. I just feel now that true friendship shines through, it is unconditional and totally accepting.

My experience is that people who let you down are often life's takers and when you can no longer be relied on to provide what they need without inconvenience, they scarper. Who needs them?

I have a close friend I'd crawl across hot coals to help and she'd do the same for me.

Fairweather friends who 'can't cope with you having cancer' must want to live in a charmed world. I feel for them because life is not like that and they've lost the specialness of your long-term friendship. It's hard not to feel hurt but I'd pity them more.

Take care and keep well,

Newdawn xx

[Hidden]

My eldest sister died two years ago from cancer (not CLL). Life-long friends (40+ years) disappeared in droves when she 'came out'.

Our societies are the problem, and the 'runners' are as much a victim as 'we' are victims of the 'runners'.

I have written a blog here 'Are Taboos a Crime Against Humanity?' that, in part, reflects some of my sister's recollections. I have been told it comes-across as a little hard-hearted, that was not my intension.

Blessed be.

[Oleboyredw-uk]

I've reread this blog as I think this is a very important discussion(to me at least).

An update on my earlier comment...

I wrote "I did share quite a lot of info with friends who had come to stay and it became obvious afterwards that one of them had difficulty with what I was saying, however they have stuck with us."

What I'd not said was that having lost contact we'd not seen these friends for maybe 10 years, until I bumped into one miles from home. So we met up at theirs for the first time in years in June, which was when I first spotted my neck swollen (they did not see it ).

Anyway, we went to theirs again for the weekend a couple of weeks ago and in the interim they've been to ours, which was when I the quoted incident occurred. They are waiting for us to supply possible dates for a weekend at ours around Feb/Mar time.

We actually had a problem finding a pre Christmas mutually suitable date due to family commitments for both of us and it was them who insisted on not leaving it.

My summary, the best ones will stick by you.

I wish you all a peaceful ad enjoyable Christmas, Rob

[jangreen]

Hi I have read all the blogs in this series. I agree with so many of them. I know from my own experience that stress plays a major role in CLL. It was after a heart break that my condition progressed to needing treatment, before it had been stable. I was told at the end of my treatment to advoid toxic people and I think that's good advice. I try now to surround myself with upbeat people and not needy people who I find emotionally exhusting. Although I don't want to bore people to death about my health I also don't want to have to protect them from the truth. That's a heavy burden to carry. Cancer is unfortunately a part of real life but so is getting on with living and enjoying life. Sharing these types of feelings helps. I go to Christian healing once a week, its not the American type who you faint and then exchange large amount of cash. Its free and more like meditation. I find that I need to look after my emotional/mental/spritiual state. Another thing I do is Walk for Health where its as much about social as excise. You can walk and talk. Hope Christmas and the prospect of a New Year feel you with optimism and not dread.

[Chrisfer]

Hi all

Reading this has served to validate my decision to not share my diagnosis with anyone but my mother.

[Hidden in reply to Chrisfer]

Hi Chrisfer,

You have not quite excluded everyone because you have made a wise decision to share your diagnosis with us. I'm sure we all wish you did not have it, but are pleased to welcome you to our CLL family. Most people I know are well aware that I have CLL, and I have found it makes no difference. I respect your decision not to share with others, but a wise choice to share with your mother.

You may find that as you travel the journey you will become more comfortable with sharing with those who matter to you.

Best wishes

Bubnjay

[pitbull]

Wow an interesting read. I fully understand how people feel and I know it i a difficult thing for people to comprehend, after all it is Cancer and the big C in most peoples eyes conjours up the inevitable image of pain and death. It is most unfortunate that CLL and Leukaemias are tarred with the same brush.

I have to admit it affected me and put a lot of doubts and thoughts into my head when I was diagnosed nearly a year ago but I have had lots of advice form forums like this, reading and good test results to make me realise life goes on and don't let this bloody disease beat me.

I am very open about the fact I have the condition, I don't shout it fro the roof tops but I don't hide it if anyone asks, I do however have to think about how to tell my new employer again when I start a new job in February and I have decided not to tell my Father or Mother in law as they are too old and frail to cope with it but otherwise I tell people if it is appropriate, Yes people react in different ways, some just don't know how to cope with the news, my response is say nothing and carry on, I haven't changed or grown horns. I do have difficulty with people who cant cope with the news I have cancer, the clue is in the "I HAVE CANCER" not them its me who has to cope with it!!

To date, the friends I had have remained friends and I haven't experienced any change in attitudes so I guess I am lucky.

[NooNoo14]

I am like you pit bull. Have told all nearest and dearest apart from the in-laws who have just lost their daughter at 52 to early onset dementia. Can't bear to heap more misery on them. All friends and colleagues have remained close but suspect that now, after 3.5 years on W&W with no physical symptoms they are starting to doubt the diagnosis lol.

Netty

[Psmithuk]

I found this subject really interesting, as I have been on W&W for 13 years now. I haven't lost any friends in that time because of having CLL, and no, I didn't tell my elderly Mum. My daughter took a lot of convincing that I was still OK and that I'm not passing it on to her children (unlikely, but possible I think). A friend (back from Oz for a quick visit) was with me, and we went to see my neighbour who is being treated for breast cancer. We were talking about cancer incidence, and the friend commented how she found it hard to believe one in three people are troubled by cancer. I pointed out that I had CLL and my husband has had a melanoma removed, so there were three people in that room affected by the big C.

When I have told people about it I tell them what my GP told me when I was diagnosed - that the chances are more likely that I will die 'with' CLL rather than 'of' it. The only trouble with this is that people dismiss and forget it as I look 'OK', and then don't appreciate what is causing my fatigue!

Does anyone know the likelihood of it being passed on to the next generation?

[AussieNeil Partner Administrator in reply to Psmithuk]

The rate of familial CLL is thought to be around 10%, but it varies with ethic background. There is also a slightly higher risk of other blood cancers in relatives.

[Psmithuk]

Thanks for replying, Neil. Perhaps I won't mention this info to my daughter!

chris

[Safta]

and I am no different from what I was then! Same numbers, some fatigue, same friends and same optimism.

I prayed then that I would see my youngest son married before I "go". He is married now and has the most gorgeous little daughter. Should I pray now that I see HER married too?