Carol W
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Fabulous, Fifty and F***ing Leukaemia

Carol W
Posted by
13 Jul 2015

An honest, frank view of my highs, lows and the pits of my journey. I hope not to offend, and appologise for any damming statements made. Hold on tight, here we go.

I've kept a diary since day one. That day of diagnosis - February 4th 2015 as it happens. World Cancer Day. How apt. How insulting. Then again, is any day a good day yo have a cancer dropped on you? I suppose I'd been half expecting it, three quarters expecting it. I was a staff nurse in a previous time so I knew that a bone marrow aspiation and biopsy was for serious stuff. My Consultant is a rare gem. She listens and is interested.  She takes things at my speed and I like that. I recall her saying that I has Chronic Myeloid Leukaemia. My response was one word......"Fuck". Not the most lady like, I agree, but then "Oh, thank you" seemed less appropriate. 

So I came out of clinic stunned to say the least. Not devastated, not tearful, not numb, not in denial but thinking, right let's deal with this, whatever it is. Because I hadn't researched leukaemias since my nursey years. In fact I probably knew next to jack shit about it. When I nursed, you usually died from a failed bone marrow transplant. Now this Doctor had used words like treatment and normal life span and no hair loss. A light at the end of the tunnel for me maybe. But cancer is cancer and, well, you just can't let it win. So, I've got leukaemia. It hasn't got me. Therefore I can take control. I can help me. I can take this on, because, well because Ive had a fairly shit life already and who the hell does this Phillidelphia chromosome think it is. So armed with my prescription for nilotinib battle commenced. First day of tabs, migraine from hell. Dear God, I thought I was going to die. Didn't know what painkillers I could or couldn't take. I felt pretty dreadful. My husband rang the clinic and they advised what to take. I used to take amytriptyline 10mgs for cluster headaches, but apparently thats a no no now. I was allowed to take one that day though and I can take one on rare occasions,  but I havent needed another yet. So with my head clearing I slept for ages. My appetite was very poor but if you are going to be in control, you need  to eat. How can your good cells recover if they have no nutrients.  I was given vulgar build up drinks by my GP. They would do until I could eat a bit more. I felt weak for the first few days. I dont know if that was me wallowing in self pity or if it really was the meds, or maybe a bit of both. And then theres the vulture relatives, who expect to see the steriotypical cancer patient.  Pale, gaunt, bauld and throwing up out of a sore crusted mouth. I am pale, always have been, I have lost weight and I am lethargic. But thats it. Thats all. I'm still me, I'm not dying any time soon. There is no need to dust off your funeral gear. It made me a bit unsociable.  People came to see me for a gawp. Like I was some freak in a side show. Avoiding talking about the "you know what". I played the dutiful patient through the tuts and the sympathetic sighs and reassuring pats . I had a month off work, I was only planning 2 weeks but needed that month. Lots of back and forths to the clinic. My blood work settlec really quickly. My whites were normal within 3 weeks. The  I got an ear infection. A GP gave me antibiotics. Big yellow horse tablets. I started back to work just after Id finished them. First day back st school and I was yellow like a minion. Eyes skin, the whole caboodle.  Back to clinic. Stop meds for 9 days. Thats 9 whole days and then another blood test. My liver had settled but it was thought that 600mgs of nilotinib was too challenging gor me. The dose was reduced to 400mgs once a day. Fasting only once whoohoo. I haven't talked much about my feelings. My deep down feelings. I will though.

Feelings don't always go to plan. I've had a pretty mixed bag of them. I didn't cry at first. Didn't grieve.  I think I was a bit emotionless for the first few weeks. Surely I should cry. I've got cancer. Thats bad. Thats terrible.  Thats so bloody unfair! But I didn't cry or become introverted,  because others cried and were sad and overwhelmed.  So....someone has to be strong...right? Someone has to hold it together?  It almost felt like a duty to assure and reassure others that I was ok and would be ok. And I suppose, because there were alot of clinic appiontments and sorting out meds, I was kept pretty occupied and focussed. I remember my cry. I remember it well. In fact I have welled up now, just rembering it. I have never felt so alone, so lost, so afraid. I didn't cry publicly.  No, thats not what I do. My family didn't see me cry and thats very hard when you live in a small 3 bedroomed house with them. The runaway tear that you quickly wipe that signifies that your chest is burning and you feel like it will burst open releasing a torrent of untamed emotion. And I fought to keep it in. So I lay in the bath seeking sanctuary to cry, undisturbed.  Not big, heaving sobs, but a continuous stream of tears, almost silent. I had never felt so sad. It lasted a good day, this sadness. I seemed to pick up again after that. I find it hard because there is very little support. I hear the gasps.  My Consultant is fab, my GP is fab, my friends are fab. My family is shit. I'm finding it difficult to make my point here, which is very rare for me. I don't want fussing and fetching and carrying for me, I just want my family to understand. Im not an invalid, but when I'm tired, I'm tired. I dont always feel like jumping into the car and toodling off to the seaside or the country side. It takes me longer to recover than it used to. I would love my husband to show an interest in my illness. He knows absolutly nothing about leukaemia. I asked him the other day if he knew if I wad Philladelphia + or not. He hasn't got a clue. This is what hurts me the most.  Whatever happened to "in sickness and in health". I dont want him to become obsessed with cml, but I don't think he even knows what cml stands for. Anyway, enough about him, thats depressing. 

I believe that I am a mixed worry bag. I mostly worry about stupid insignificant things and when the big things come along,  I believe what will be will be. Everything happens for a reason. Not that I seem to understand alot of these reasons. I worry before each clinic appointment,  even though nothing has changed and I feel well. Yet when I feel really sick or have a banging headache or a sore itchy scalp or any other of the side effects from the drugs, I seem to cope really well, take it in my stride. Sort it out with counteracting drugs. 

I try not to have too many down days. They are not very productive.  If my husband is particularly unfeeling, I tend to take myself off to more uplifting company. A laugn is the best medicine I've ever known. I laugh quite alot these days. I dont get too many side effects either, which I am more than greatful for. The odd bout of nausea is probably the worse.  A bit like morni g sickness although Im never actually sick. I get episodes of fatigue but thats part and parcel of it. 

I think I need to ring the McMillian people. See what support they can offer. Ive got a key worker that I met once. She works in the hospital and so I think by default she would be far to busy to spnd time with me chewing her ear off. Nhs staff are run ragged and I may be wrong in thinking this but I think being given a key worker just ticked a box. Shes not really a tool to be used. But I'm in a good place at the moment. I want to learn about my leukaemia. I want to read research. I want to be knowledgeable.  Knowledge is power. It will help me make choices and be a better me so that I can look after me and keep me healthy. Onwards.....

Comments

15.07.2015

Carol thank you so much for writing so honestly and openly about your experiences with CML. Reading about your diagnosis and the response of others to my condition reminded me a lot about when I was first diagnosed. It's difficult for others to deal with something like blood cancer, too, and some are better at dealing with and discussing issues than others. That doesn't make them bad people and it took me a while to understand that. 

I'm so glad that you've got a consultant that listens to you - it's really important to know that they're on your side and that you feel that you can speak openly with them about any concerns that you have. It sounds like treatment so far has had it's fair share of ups and downs and that you're still trying to find a dose of nilotinib that works for you.

I'm not sure what support network that you already have in place but I've found the CML UK group on Facebook extremely helpful. It's run by patients for patients and is a great place to get any concerns and your frustrations off your chest in an environment where people are more understanding of what you're going through. Here's a link if you're interested: https://www.facebook.com/groups/cmluk/

You're not alone in all this and we're here to help in any way that we can. Keep up the diary and stay in touch.