CML - Guilt! Lots of Guilt!

[Kibbit]

Hi Everyone,

My name is Jo, I’m 34 and was diagnosed with Chronic Myeloid Leukaemia (CML) about a month ago. You’d think I’d know how to spell Leukaemia by now but alas, I need to use spell check every single time.

I spent some time this afternoon on the phone to a very lovely lady from the Blood Cancer UK helpline, and following that I just wanted to write a post with my feelings at the start of my Cancer Expedition (better word than journey) as I was worried I wasn’t normal, but the very nice lady assures me that I am. As such, I came here to write a rambling post about my diagnosis and how I feel about it.

I suppose you could say that my diagnosis wasn’t actually a surprise to me. I’m a little bit of a hypochondriac and I’d convinced myself twice before now that I had Leukaemia, only for the blood tests to confirm there was nothing wrong with me. As I sit here now, I cannot help but laugh at the irony of this. Most recently I’d convinced myself again that I had Leukaemia as I had these bruises start to appear on my legs, and they were huge. I’m a firm believe that you should name the things that scare you to make them seem less scary, so I called my bruises Barry 1, Barry 2, Barry 3 and so on. I went to the Doctor who examined the Barry’s and told me I was fine, but he’d order some blood tests to rule out anything serious. Obviously the Doctor failed to rule out anything serious as that was when I found out I had CML (apparently, 3rd time lucky).

The first thing I felt upon hearing this was relief. Not that I was finally sick, but that the fact I was sick had been confirmed by medical professionals and so now they could start treating me. Between the bruises and my Doctors appointment I had been a mess. Every time a new bruise appeared I’d call my boyfriend in floods of tears or hug the cat - I knew there was something wrong with me and it was just so comforting to know that now, it was going to be made better. I didn’t have to stress in front of the mirror anymore and I could stop obsessing over every tiny blemish. This leads to my second and the most predominate feeling I have.

That would be guilt. I have read the stories on the forums, and I cannot help but feel so very, very guilty. My current treatment plan is 1 pill a day, and as it stands the only side effect I’m having is constipation. I am so very, incredibly lucky and for that I feel guilty. When I shared my diagnosis with my friends and family, there were balloons, food, flowers… I don’t feel like I deserve any of it because I don’t feel unwell. I feel guilty for accepting gifts I don’t feel like I deserve. Yes, I have cancer. Yes, I’m undergoing treatment. But when I compare my experience thus far to the experience that some of you guys are going through, I feel ashamed of my diagnosis, like I’m not sick enough. I feel guilty that I am part of your community even though I don’t feel unwell, and I feel guilty for being lucky. The killer though is that I feel guilty because I cannot help but be thankful that I’m lucky.

My last few reviews have all been in the Day Therapy Centre at the hospital, and every time I go I feel terrible - like I’m at a club meeting even though I’m not part of the club. I feel nothing but respect and admiration for the people, and I say my little silent prayer to the Universe for their strength and wellbeing, and then the guilt descends because as I say my little silent prayer, I’m feeling well.

I looked around on the internet to try and help with the way I’m feeling, and all the bits I found in relation to guilt talk about the guilt you might feel for getting your diagnosis, but there’s nothing that talks about the guilt you might feel in situations like the one I’m in. My guilt is what stopped me from previously posting on forums such as this one, because I didn’t feel like this was a space for me, but the nice lady from Blood Cancer UK assures me that this is my space and you are my people. All of you. So here I am, joining in with the club. I hope that if anyone out there is in the same boat as me with this guilt, that you know you’re not alone.

I wish nothing but positivity and love to all of you <3

P.S. Because my Leukaemia scares me, I have called it Lucille. I can also spell Lucille.

[Erica]

Oh @Kibbit there is as big a space as you would like on our forum, you (Lucille and as many Barry’s as you like) are so, so welcome on our supportive forum and you are now part of our forum family.
It is not about comparing on here about who has the worst blood cancer, time on treatment, prognosis most of us probably share similar feelings to you and all feelings are valid, guilt feelings can eat away at you.
I often call it a rollercoaster of emotions and my head is like a washing machine of thoughts going round it. My fear sets in before, during and after tests, results and appointments. I walk into somewhere medical and my head goes blank which is why I have to write down all my questions before hand.
What lovely caring family and friends you have bringing you balloons, food and flowers.
It also sounds as if you are a very caring person and have the support of your boyfriend and cat.
I was in shock for a long while after my diagnosis, just be ever so kind to yourself and I look forward to hearing more about you on our forum and if you would like to speak to someone the Blood Cancer UK support line are also there for you.
Look after yourself.

[Chrispy]

Firstly welcome @Kibbit . I am a fellow CML sufferer who can’t spell it either even after 19 years. Like you my symptoms were Barrys and since then i have been on tablets and have mainly felt well. Again like you i have the constipation. The number of tablets may vary at times but there are very few side effects to worry about. But without the tablets you would be in serious trouble so in that way you are ill.

The first few months you will go through all sorts of emotions and all of them are normal. This is the place to share as i have found support from many people on a variety of subjects. This is a safe place where we all understand and nothing is not normal.
x

[Kibbit]

Hi Erica,

Thank you for your kind words - I’ve been feeling rather fragile today so they’re very much appreciated. I have tried very hard to stop the comparison because I know logically that everyone has a different experience, but it’s so difficult. I’ve booked myself in for a counselling session on Friday in the hopes that it will help.

I totally relate to you on the fear! In between appointments I’m absolutely fine, but the second the clock strikes midnight on appointment day I’m a nervous wreck! I actually did some reading into fear to help me try and process mine, and the most meaningful article I read told me that fear is best thought of as a friend who has the sole purpose of keeping you safe. It suggests that when you’re scared, you acknowledge the fear then thank it for keeping you alert, keeping you safe and then decide whether or not you need it at that moment in time. I’m going to keep this in mind for my next appointment!!!

Thank you again for your message.

[Kibbit]

Hi Chrispy,

The fact you can’t spell it after 19 years makes me feel a lot better!! There are too many vowels in the word and I never know which order I am supposed to put them in

Can I please ask what you do about the constipation? The hospital prescribed me lactulose but honestly, I’d rather deal with the constipation then go through that again!

I keep telling myself that this is just the start for me and I have a long way to go - I just need to learn to be patient with myself and suppose. It’s all very new still!

Thank you too for making me feel welcome - it helps

[Marylin]

Hi Kibbet

I felt relief when I was diagnosed with Polycythaemia vera (PV) as it confirmed to everybody that I wasn’t a hypochondriac. How sad is that, relieved that I had a blood cancer. Polycythaemia vera (PV) causes me to have clots which I live in fear of, but it is the difficulties with the NHS which cause me needless stress.

Welcome to this forum, they are a very understanding and supportive group, each of us have our fears, issues and causes of concern but writing to this forum brings comfort, help and camaraderie . A trouble shared is a trouble halved as the saying goes. We do understand what you are experiencing and will try to help you if we can. Marylin

[Kibbit]

Hi Marylin,

It’s not sad - I understand completely. It’s like validation that those feelings you had were genuine and real. I’ve driven myself mad before convincing myself I had things I didn’t have, but now I’ve got this I feel like it’s brought that under control? I always feared the worst, but now that’s happened and I’m handling it I’m more at peace with my health than I was before. It’s funny how the mind works

I’m sad to hear that you’re having difficulties with the NHS I’m sure that’s most unwelcome right now! Is it anything you can resolve?

Thank you too for your kind words. It’s still strange to me that I’m part of this now, but it’s early days! If you don’t mind me asking, when did you receive your diagnosis?

[Chrispy]

Hi @Kibbit . I do use lactulose but you can use senna otherwise. It works for me. Just a small amount before i go to bed each night keeps me going.

I do agree that the vowels do seem wrong sometimes and a’s and e’s get confused. I tend to use CML in most settings instead. I take Nilotinib which is easy to write but if i am asked to spell it verbally there seems too many i’s.

All the best

[Marylin]

I was diagnosed about 18 months ago, I was given blood test after I experienced clot in the lung and on portal vein of my live, then I had a clot in my carotid artery which was removed and the surgeon, a naval commander asked for the tests as I was having trouble recovering from the operation. I kept going to the GP saying I didn’t feel well, I couldn’t pinpoint any particular area of pain, twice I was told I had acid indigestion of all things. Then I lost partial sight in my right eye caused by the clot in my artery. I am beginning to feel like a cat that has used up most of their nine lives. Hence me fussing over the Warfarin tests, I don’t want another clot but I don’t want to bleed to death. By the way I remember the spelling of leukaemia by say it to myself as Le(e)-U-Ka(y)-e-Mia same with haematology ha(y)-e-mat-ology if that’s any help. Most of the time I try to forget the Polycythaemia vera (PV) as it gives me a healthy looking tan but sometimes the chemo,pills make me dizzy and very fatigued, I am lucky enough to have a treasure of a carer to help with all things so I can stop when I need to. Marylin

[Erica]

Hi @Kibbit can I ask what was wrong with Lactulose?
I have been on it for years without any problems.
As @Chrispy says Senna is an alternative, tablets or liquid form, it also works for me. Although it brings back childhood memories of my mother boiling Senna pods and a jug of this filmy brownish liquid that I had to drink regularly, yuk.
There is nothing worse than constipation it can really hurt and bung me up and make me feel really lethargic and yukky.
Be kind to yourself

[Dan0921]

Hi everyone, Is it cml equal to pmf? I mean I saw it many times that pmf equivalent to cml🙏🏻

[Erica]

Hi @Dan0921 I have no idea, but it is really a question for your medical team as they know your whole medical history and I will also copy your post to the Blood Cancer UK nurse advisors @BloodCancerUK_Nurses.
There must also be a reason for your question that you say you have seen many times before?
Take care of yourself and please keep posting

[GrandmaJo]

Hi Kibbit,
You are definitely in my club because my name is Jo too and I have CML. How is that for belonging.
I never had Barrys just pretend appendicitis! I am on a tablet each day but did have a gruesome set of chemo to start with. Just flow through the days in whatever way you can. Guilt is totally misplaced- try one of these instead - music, cake, walking, giggling etc the list is endless and they are far more productive than guilt. Giggling is best done with those family and friends who have had a fright with your diagnosis. If you energise each other with cake it works best and you will all feel so much better.
Not very serious - but I am sure things will settle for you soon.
I cannot match with your young years but that is a superpower which I did not have. It does however make things a bit more scary for you because you do not expect to get poorly at that age. Just trust me and remember that you do have at least one superpower!
Lots of love to you. Jo

[nelletap]

I have to reply. What a fantastic way you have with words. Exactly the sort of approach that helps the rest of us - or certainly me. I too struggle with spelling my disease. I decided some time ago it is my body or brain’s way of denying it exists. Your mention of guilt also resonated. When my hubby had a fairly long course of cancer treatment and we used to travel there together, it was the little kids I saw needing treatment that got to me. I tend not to mention things to my kids as if I remind them of my Chronic lymphocytic leukaemia (CLL) I can see the shadow of worry across their faces but then that means it is harder to say some things to them. I’m a bit of an ostrich but can worry when there seems to be a downturn. I’m going to think of a name for mine. Perhaps Celia and I must revisit Simon and Garfunkle’s song (which may have been Cecilia). I think this is the beginning 'Cilia, you’re breaking my heart. You’re shaking my confidence daily… Do ramble again if you have the opportunity. So nice to have someone express themselves so well in a way that resonates. Tricia

[Rich169]

Hi i got diagnosed cml a while ago and im still full of why me. I suffer from sickness nearly everyday and just wondered if you do to .Its turned my life upside down ,i only went to drs for a stomach ache .

[Erica]

Hi @Rich169 a great big welcome to our forum.
Yes, ‘why me’ is a very natural question.
I am concerned about your nearly everyday sickness, yes, it must turn your life upside down
Have you told your medical team about it, the severity and impact on your life?
Be kind to yourself

[Kibbit]

Hi Erica,

The lactulose gave me awful stomach ache - I honestly thought I was going to explode! I was taking 10ml in the morning and another 10ml in the evening, so I wonder if maybe I should have stuck with one dose? That said, I’ve not had any issues since so I think it was just the joys of adapting to a new medicine!

I will have to look into Senna, although you haven’t really sold it !!

Jo x

[Kibbit]

Hi there fellow Jo

No offence, but I wish we could have joined a different club than the CML club The ‘Jo’ Club is fine though!

I had pains in my stomach too which they told me to monitor in case it was appendicitis, but turns out it wasn’t - apparently random aches and pains is a thing now? I thought I was just getting older…

I would very happily replace guilt with cake, and tbf I think I have been… My breakfast this morning was 4 jammy dodgers, a yoghurt and one of those Fibre One bars. I’ve decided that come October I will behave as I’m doing one of those Charity Events that requires me to walk 100 miles across the month. Last night I ordered some new walking boots and a waterproof coat, though I suppose I could just use this as an opportunity to justify eating more cake and walking it off

It is scary but I find talking about it helps, at least in my own way. I have a little blog that I’ve started writing which is somewhere I can be honest about my feelings. Its exhausting pretending to be positive all the time - sometimes you just want to be angry!

You also have a superpower!! You are surviving <3

Love to you too, Jo x

[Kibbit]

@nelletap Thank you so much for your kind words!

I wish it was denial… It’s honestly not! I had a brain haemorrhage a few years back after I was hit by a stationary tree, and since then my memory has gone to pot. I just don’t remember how to spell it and end up with vowels all over the place!

Of all the things I’ve felt over the last few weeks, the guilt is the one that has taken me most by surprise. It never occurred to me that I’d have anything to feel guilty about, but then you find yourself in this position and suddenly realise it could be so much worse. Over the last couple of days I’ve alternated between Anger and Depression, but I’m sure Acceptance can’t be too far over the horizon and it has only been a few weeks - something I have to keep reminding myself!

Ostritching I think is a perfectly reasonable thing to do very now and then - sometimes we just need to make it through the day. I’m currently trying to remain above the sand but it’s getting more and more inviting by the day!

I thin Celia is a great name! Was that Simon and Garfunkel? I will have to google this - not heard that in ages! I’m more of a Mamas and the Papas or The Beach Boys. Brian Wilson was my first love I am sure that at some point I will be back to ramble!!! It’s getting me to shut up that poses the problem

Take care, Jo x

@Rich169 - I think ‘Why Me?’ is super natural too. I’ve come to the conclusion that I was just unlucky, but I suppose when I count all the other ways that I am lucky it does kind of balance out. I’m trying to twist this into an opportunity for me to re-evaluate my life, make some changes and be better. I’m not yet there though because I am still somewhat seething with resentment

I’m sorry to hear you suffer from sickness every day. I don’t have that - though if I take my Imatinib without any food I do get quite nauseous rather quickly. Have you spoken to your medical team as Erica suggested? I’m also sorry to hear that it has turned your life upside down and I relate to that. I have been trying to not let that happen, but yesterday my partner couldn’t come near me without me bursting into tears. I feel a bit lost at the moment, not sure if you feel the same? Always happy to talk it out if you’re having a moment

[Erica]

@Kibbit @Rich169 @nelletap @GrandmaJo @Dan0921 @Marylin @Chrispy
I never had such a rollercoaster of emotions before I was diagnosed.
My emotions are always on high alert.
I never had what my parents called negative emotions, I was taught ‘good little girls’ didn’t.
Also ‘good little girls’ didn’t cry.
Now I can burst into tears at the least thing and when I least expect it.
All emotions are natural and OK I now realise.
We are all OK and brilliant, unique people who have experienced so much.