I have been looking back over my postings on here and have tried to compare what my journey has been like in comparison to others,And I have come to the conclusion there are many good outcomes for others and such positivity that (despite how happy it makes me to see others doing really well) I am bring things down in a negative way.
From the bad experiences on the 1st line treatment to everything that has gone wrong since I never seem to have a truly positive outlook on things,and now I'm struggling with health issues which I'm told are linked with the Ibrutinib,I'm awaiting an angiogram to see why my heart rate is fluctuating from a lowly 25 beats per minute to a whopping 188 beats a minute and BP readings of 89/60.I'm not feeling sorry for myself but I am frustrated that for all the good stories of journeys on here I can't add positivity,for that I am truly sorry.
So I thank you all for ALL the support and Fantastic advice over the last 6 years and wish you all well in life,I will continue to read your journeys but will no longer bring things down with my negativity.
With heartfelt best wishes to all
John
Written by
saintjohn
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John: Don’t go away! We are all on individual journeys that have high and low points. It sounds like you have been in a valley for quite a while which I am sorry for. You need good care and support to help get you to a better place. It sounds like you have a good medical team so let us provide a bit of the support. Please try and stay positive. I truly beleive doing so can make a difference. And don’t go away as this is one of the few places you can go to where others have had the same experiences as you.
John.. have you looked at dietary changes and stress management as both can cause the side effects you describe... and both could have a possible link to Cll.
Oh John it saddened me to read your post because you are exactly the kind of person we need to hear from. Your posts and reality resonate with so many and we all experience this horrid condition differently. It’s not a benign, jaunty little condition without consequences for so many and there’s times the treatments can throw up issues that are as troublesome and worrying as the CLL itself. That’s not negativity...it’s reality and it’s inescapable.
The last thing we want is for you or any member to feel their real and distressing issues are bringing others down. This site isn’t an entertainment site (although we like fun too). It’s primary aim is to support each other and I’m sad if you feel you have to be upbeat and positive to be a member. This isn’t the glee club and if you’re struggling, we care and want to know.
Take any time you need John and I’m not going to make glib recommendations about improving the side effects because I know you’ll have been through hell and high water to sort things.
We were diagnosed at the same time and have shared many issues and problems on here. Don’t bale out at the very time you need us my friend (and we need you). I may be starting treatment soon and may need every shoulder to cry on as possible. Especially strong ones who have already been there!
There are many folk here who are struggling.. If people only posted about their good times, the strugglers (and I am one of them).would feel even more isolated.
We all have our ups and downs. Sometimes the down times go on for a long time and we find it hard to remember what it was like to have a good day.
But we are a community that wants to support each other through thick and thin. We don’t want to be fair weather friends who abandon folk when they’re going through the storms.
I love to hear the positive things, how people are doing well on their CLL journeys and celebrating good news. I rejoice with them. But I also want people to be real about the tough times, so we can walk alongside each other – whether it’s through long grey dreary times or short sharp crisises
For hubby and me, the last year has been probably the hardest of our lives (though not just due to my CLL). I’m very glad I’m still part of this group and don’t feel I have to go away because I don’t have a lot of success stories to tell.
I have just read Newdawn’s wonderful words above, and agree ABSOLUTELY!
John, I think not posting is a mistake. I didnt come to this site to hear just good stories. I came to be educated and share experiences with people going through what I am. I love to hear possitive stories, but everyones battle is different, and only hearing the postive gives people( especially new people) false hope sometimes. We need both the good and the bad to keep us grounded. Plus I find the people hear truely care about members, and its a great form of support for those whose battle is harder. If for no other reason a good place to vent your frustrations. There could be members who only read and can relate to your story. Best wishes and please keep us posted. You are not alone in this battle.
John, I don’t know your history, but reading you are on Ibrutinib and it could be connected to your irregular heart rate (a common side effect) this site continues to need your input, especially for those on Ibrutinib.
Im sending you much love and prayers for your health.
Don't give up and don't go, we are here for you! After the lowest point, even hard to imagine, usually the best comes. I hope you will soon share a positive update!
John, you have had a rough journey so far but please don't stop posting.
Your input is so useful to many of us, in particular those who are in treatment or just about to start. It's so important to hear real stories, so that we know what might happen.
Wishing you well, take care x
We need the good and the bad to help us decide. Real people going through it, not some research document.
If all were negative or all were positive there would be a problem with this site.
CLLers can have dark days, very dark days, it’s natural but we all bounce back.
John, this hurt to read, I hurt for you. Please stay. We ALL need each other - from the watch and waits, those in treatment, those in (hopefully long) remissions.
I had a really crappy, super down day a few days ago and it helped me to come on here and read that day's experiences from my fellow CLL'ers.
Don't feel alone, you don't depress anybody; it's good to share our own experiences and share in others.
Oh, John, for every reality that you post there are people with the same reality who are afraid to post, and draw comfort from knowing that they aren't alone. You don't bring us down, you keep us grounded.
You might want to send a Chat to ThreeWs, aka Wayne, who had cardiac problems with Ibrutinib. His were resolved with surgery and he was able to continue on it, but he learned a lot about that down side of things while looking for answers.
Lovely though it is to read all the positive stories on here, it’s only right to bear in mind that it’s not like that for all. I think that reading about the less positive outcomes is so beneficial to those who are also struggling and makes us feel not so alone. I for one like to have a comprehensive overview of things, then I know what to expect. If we only ever hear the good stories that will only serve to make us feel more alone when our own experiences don’t measure up.
Also, for me, the opportunity to draw strength from my fellow CLL’ers in times of sadness and worry is invaluable.
As I’ve so often said, it’s a club that I had no wish to join but feel all the richer for doing so.
Please reconsider - we need all the help and support we can from the fantastic to the not so great. We need each other.
John, please don't give up on us and more importantly please don't give up on your self.You sound very down right now and that is understandable but we are all in this together. We want to hear from you and help support you...that's what this all about. I hope that you will reconsider and keep us posted. You have to know there are many of us that truly care...We need each other. I am praying for you , Pumpkin
John, please don't leave us. You were there when I first joined this group and you helped me when I was desperate. This condition is one where there are peaks and troughs. I think there is a tendency for those with good news to shout it from the rooftops (understandably!), and those that are struggling to hide. It gives a false impression, the good and the bad need to be aired to get a balanced story. I wouldn't want you to feel pressured to post if you don't want to, but I would hate for you to feel that you have to isolate yourself from this group. Do whatever feels best to you, but know we all want to support you.
Don’t give up John. Cll is a tough diagnosis to be told you have. Everyone on this site has good advice of what to mention to your medical team. Ibrutinib has the heart rate side effect. Your Dr. Can give you. Meds to regulate heart rate. I’m on carvedilol for heart rate. Keep busy , go speak to a therapist , take walks, get a massage pamper yourself a little. Don’t worry about your posts bringing us down,most of us have already been there. I hope your Dr. Can get you feeling better.
Like so many others, I don't think this should be your last post. Be as good as you can to yourself, get the best help you can and keep telling us like it is - you need the release valve and any helpful possibilities that others can suggest - and we need to know the range of realities that may await. Pollyanna we are not - nor need to be or need pretend to be.
Thank you so much for the reassurance and support,Yesterday was a particularly bad day and I let the depressive mood I am experiencing get the better of me in more ways than one,not responding to treatment in the way I had hoped has been frustrating to say the least,but having read all these responses and also meeting up with my Macmillan nurse this morning has given me such great support that I feel truly humbled,I thank you all for being there.
Great news that you decided to keep us around John. There isn’t one of us that hasn’t been in your shoes. We all need to help each other here because cancer sucks.
Don't leave us John. I too am struggling with side effects of Ibrutinib (especially heart issues) and although I try not to stress these, I hope I can still be supportive of anyone similarly struggling.
Please stay and share your knowledge and experience whenever you can.
Glad you are feeling better today. Probably just writing what you did yesterday may have helped. Just venting can be so beneficial.
Also, let me remind you that seeing someone else’s struggle may really help the people who are reading it in many different ways. One who is sharing similar struggles may feel encouraged that they are not alone. One who is doing much better thank you can read it and be thankful that they are not as bad off as they could be. One who is new to the site will not be scared because “everyone” is doing so well and it would give them a false sense that CLL is not as bad as they had heard. It takes all of us to make this forum work.hang in there!
I've just read your initial post and your most recent one. I am so glad you posted again and can only agree with all the above that we need to hear the good and the bad as so many of us struggle with multiple treatments and varying responses. I hope things improve for you and hope you realise that we do do want you to continue posting as and when you feel able.
John, what can I say to encourage you to stay and carry on posting?
I suppose just that we are here for the good and the bad, the sad and the happy, the remissions and progressions, the disappointment and elation of everyone with CLL or who cares about someone with CLL wherever they are and that includes YOU!!
I am sorry that your journey is so troubling. And by the way, "positivity" is way overrated. Just keep plugging away, one day at a time, one moment at a time, and don't close doors.
Oh, please don’t go away! I know for myself, I value Everyones journeys/experiences, whether they be positive or negative!! 💜 I get lot’s of information from some stories, scared from some stories, humour from some stories, sadness from some stories, Joy from some stories!! All the stories, opinions, neg or pos, teach me Something!! Please stay, John, and keep posting what’s going on with your health issues!! 🌟
This is an online CLL support group for exactly that reason - I don’t think you bring down the group in anyway - we all have broad shoulders. I’m very sorry to read all your struggles & best wishes moving forward.
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