It was a Friday in November '19, I had been very anxious. I recieved a phone call. I was in tears. I had gotten a new job! I drove home, enjoying the music on Kiss FM, which was a first. I told my wife and hugged her and gave my nearly one year old daughter a sloppy and intentionally irritating smakeroo on the cheek. I went to bed a little nervous of how I might measure up to this new role. I was pleased to bring home some more bacon. By the end of November and into early December, I was considering jacking in my new dream job. Bacon was the last thing on my mind (I love bacon).
The letter fell on my mat like a ton of bricks, but really this humpty dumpty had been teettering on a wall for some time. My doc had found a huge increase in my white blood cell count in a routine blood test for mitochondrial diabetes (from me Ma’s side), the diagnosis was tbc. I fell into anxiety and depression. Got signed off. I had been overworked and drinking quite a bit for some time. My family had a history of cancer; specifically my dad and Google said it was a possibility. I had to wait two weeks. I feared I had cancer. I sat an important academic exam (hate them), and a day later the results confirmed Chronic Myeloid Leukaemia. I was right, I had cancer.
It’s manageable they said, it’s very treatable they said. That has been the case so far. The hardest thing was the existential dread. Duurh. Plus the bone marrow sample (now written examinations don’t look so bad).
I had a month to get work ready. I started Dec thinking I’d never be able to start a new job in Jan, but proper treatment for depression and a healthier lifestyle has helped me get used to the imatinib medication. I feel very lucky, and by crimbo I had felt like I turned a corner. Santa took away my dread and I started to come to terms with my diagnosis. I don’t have all the answers. But knowing a bit more about what I’m up against, put me back together again. The guys and gals at hospital are all good eggs. My bloodwise book sits on my nightstand, but I haven’t reread it yet. I started work. It is hard. It is stressful. But it’s not cancer.
I am not my dad. I think my journey will be different to his. I miss him terribly. I’ve been through some of what he faced, but I’m fairly keen to see my daughter grow up, so I’m grateful to medical science. I’ve felt quite alone. But I’m certainly more positive about the future. Not sure why I used a few egg puns. Feel free to poach them, yolks.
Hi, firstly what a brilliant way you have with words, you sound a Good Egg. Welcome to our community forum, it is here to support you and if you feel the need to speak to some other really Good Eggs then the Bloodwise support line is free from UK landlines and mobile phones on 0808 2080 888 and they are available to take your call Monday to Friday from 10am to 4pm and on Wednesdays from 10am-1pm, but you can get in touch whenever you want and leave a message and they say they will get back to you within one working day. Since that Friday in November, which is only about 2 months ago, it seems as if you have been on an emotional, practical, medical and physical roller coaster. To me your fear, stress and emotions seem to seep out of your post. To me just starting a new job is stressful enough. Since my diagnosis I do not deal with what personally stresses me well. I freeze and it all gets too much and the thought of taking exams or being assessed just makes me cringe. You also seem to share my love of music, but I have found Google and drinking are perhaps not the best idea for me sometimes. However you have made me think that I use humour, especially verbal humour, and the smile on my face often to cover up what is going on inside me. No, you are not your dad, and I am not my mum, but I feel I perhaps know what she went through, which I did not appreciate at the time. I would be interested to know how you and your wife have dealt with the last couple of months. All this talk of bacon and eggs is making me hungry, you can’t beat it, well you can beat the eggs, I suppose Take care.
Hi Erica. Thanks for the info. It’s been a roller-coaster, but we are doing as well as can be expected. I think the hardest thing is the uncertainty of things my wife and I took for granted in the future. We’re not certain how the drugs and condition might affect family planning etc. All the best.
Hi, I have learnt to write down all my fears, questions, thoughts, feelings, symptoms, medical conditions and practicalities as I immediately forget them when I walk into a medical appointment and the family planning issue I would have thought is definitely one of those for your medical team. Let us know what they say as it would only be an answer for your particular circumstances, but it might enable others to ask one of the unspoken fears we often have.
Take care.
@Ads9unders I have had my usual Saturday morning breakfast of two soft boiled eggs and two toast, lovingly cooked by my husband (for most Saturdays of the 44years we have been together) so am ready to egg your posts.
Reading your post reminded me of when I was diagnosed with HL in 2007. For the last two years I had finally got my work/life balance sorted, left teaching and was working in a GP practice with a smashing team. As my daughter said, it was great to have her Mum back. I could read a book, watch TV, chat with my family, go out, without thinking I should be doing some marking, lesson prep etc. My 3 children were getting their lives and careers sorted, the youngest was doing well in his GCSE year. We were comfortably well off and having decent holidays. Life was perfect…or so I thought!!!
It sounds as if there were other problems going on, with anxiety, depression and drinking, and although it may seem a strange thing to say, your diagnosis may have been a blessing in disguise. You are getting help for these problems, which is probably a relief for your wife too. We learn to take pleasure in the simple things in life, and watching your little girl grow, take her first steps, call you dada, build a tower of bricks will be even more magical. She may even break a few eggs to bake a cake!!!
You are never alone. We are here, as are the Bloodwise team (who are also good eggs) and you will also find other people here who you can relate to. There are threads on fatigue, which is common to most of us. I also wonder if you have told your new employers? There is information that you can give to your employers on the Bloodwise website.
You come across as someone who has a good sense of humour, and that certainly helped with my family (although some people frowned and didn’t think cancer was a laughing matter). I wish you every success in your new job and in your treatment. Enjoy life, and if you can do something, do it now!
I feel your pain: I was diagnosed with CML just before Christmas. I too had a lot on my plate: a new job running a small business, standing for election and caring for my disabled partner, to name but a few.
A little over a month later and I’m settled on the treatment, side effects have subsided and my white cell count’s back in the usual range. CML’s proving manageable though I have had to make some relatively major adjustments such as working from home for the short term at least. Now, I’m proud of how I’ve dealt with everything and positive about my future.
I would recommend asking for a holistic needs assessment with your clinical nurse specialist, if you haven’t done so. I found it a great help to run through practical concerns with my key worker, who had more time on her hands to answer questions than my haematology consultant.
Anyway, all the best for the future – CML’s a rough egg to cr ack, but I’m sure we’ll both get there
Hi Chris. You do have a lot on your plate, and CML dropping on you was not what you needed.
Saying that, you seem to be doing a good job keeping those plates spinning. I am pleased that you are adjusting to the changes in your life, but if ever things start to feel out of control you will friends here to support you.
Best wishes for your future, Louise
Wow, you have a lot going on and so much has happened to you in a very few weeks. I remember being in fear and shock for absolutely months, with thoughts and feelings whizzing around me. How has your diagnosis affected your relationships? Take lots of care of yourself.
Not well. That’s perhaps been the worst impact. I do most of the cooking, cleaning etc and it can be difficult when dealing with extreme fatigue. Unfortunately, my partner seems to have little appreciation for the fact that I’m working while at home during the day. In fairness, she has stepped up to support me in many ways but I’m not sure she fully appreciates the burden that I’m under. I suppose I should broach the subject but I’m unsure how to do so because the last thing I want’s to lose her!
Hi Chris, you say your partner is disabled, but does she work at all, and is she very limited in what she can do physically? If she is not able to help with chores, do you have a social worker so that you can perhaps be assessed for some help? Is there somebody who can explain the effect CML is having on you, or perhaps get the Bloodwise booklet (look on the Bloodwise website) for her to read
For now, prioritise what needs to be done, and then other bits can be done when you have a good day. Make sure you rest when you can. Best wishes, Louise
I asked the question around relationships because my husband and I both come from families that didn’t communicate and I was brought up not to show ‘weakness or feelings’ so I am the coper and carer (often with resentment) and expected my husband to guess how I was feeling and what my needs were. Unfortunately he carried on before because all he noticed was me appearing to cope. Still to this day he appears not to think about my diagnosis. I am getting better at saying my needs but it does not come naturally. Initially I could not explain what I did not understand myself. Today, Bloodwise do have some really useful booklets and information as @Pisces56 says and also my husband does the hoovering, washes the floors and irons (and also thinks he does them better than me, but who cares) and I have the odd nap. I have found the best way to broach a subject is to say how I am feeling and asking my husband if he could think of any way to help me. By the way my New Years Resolution was to do less housework. Take care and let us know how you get on.
Erica, My iron is rarely used, as I try to buy clothes that don’t need it, bedding gets crumpled as soon as you get in bed (although I do iron pillowcases). I do have a funny memory from my chemo days though, of when my elder son used to come home every weekend. I did his washing, but he did all the cooking (I got the better deal). My son-in-law was visiting and gave him a shirt ironing lesson. I obviously taught my daughter well as she never irons. Her husband has precise ways he likes to iron, so he gets on with it. School uniforms are non-iron now.
As for other housework, it gets done when it is shouting at me! A neighbour was hospitalised last year after having a cleaner in who made the house sparkle, but the cleaning products caused havoc. A friend and I often say that no good comes of cleaning
Chris you’ve got loads on, I think everyone does these days. Sounds like we found out about our CML at the same. You too sound like you’ve taken to the treatment well. I found going back to work helped get back to normal(ish). I’ll ask the clinical nurse about those things, that’s a big help.
I’ve spent a weekend at Centre parcs, and it’s been a long overdue break, but my wife didn’t let me jump in the plunge pool! I got to go on the flumes though. I too have struggled with the relationship impact of diagnosis. We’re just trying to be honest with eachother, but things seem to be a marathon not a sprint at the moment so, I’m trying to be pragmatic and concentrating on the bigger picture. Perhaps that’s just what you’re doing? Keep going!
It’s great news about your bloods, you must feel more in control. You’re smashing it! Hope the election goes/went well.
It is interesting what you say about struggling with your relationship and I am glad you are both trying because I know I do not deal with what personally stresses me well and often it just get all too much and I think I tend to go into myself which is not the best for my relationship and I think my husband does the same. At that point all my thoughts and feelings go whizzing round in my head and in hindsight I am inclined to look at everything from only my point of view and sometimes ‘the poor me’s’ leap in and I think perhaps my husband does the same. Thank you for making me think about my relationship and my part in it and please keep posting.
