I'd like to say thank you to those of you who commented on my first blog entry. It certainly does help to know that I can say what I feel and at least someone will understand where I am coming from but the question I ask myself is why do I sugar coat my fears to other people? We had some friends around on Sunday and one friend just sat to one side with me and asked me how I was feeling......oh...the bravado! oh the "I'm going to be fine" oh the...." well I am so lucky to not have it in my bones" when all I was feeling inside was that I didn't want the bloody disease AT ALL, that I was grief stricken, frightened, sad, hopeless and just a little angry. But no...I filled her with encouragement, didn't want to frighten her I suppose with just how bloody awful you feel mentally when diagnosed with cancer. I'm not particularly angry that I've got it, I haven't had the feeling of "why me" ...more the thought of "why NOT me" nothing makes me any more special than anyone else so I don't feel that I don't deserve this, because that would automatically make the assumption that someone else did and we all know that we definately would not wish this on our worst enemy. I've always been a planner....looking forward to the next thing. This has often times proved to be a curse rather than a blessing because I have tended to not finish things because I've already moved on to the next project. I love holidays and on the plane home from one holiday will start talking about where we will go for the next one...I've always needed something to look forward to. I feel at the moment that this has been taken from me and I don't know if I'll ever get that back and that really upsets me. I have done a lot of reading and soul searching about how to live my life one day at a time but I'm not mastering it quickly enough. At the moment I am receiving no treatment because they don't know what I've got really. I have had 5 weeks of neck radiotherapy and have recovered very well from it, the doc says if my next biopsies are malignant then I will get the treatment for myeloma which is thalidomide/steroids/chemo and I've heard they are pretty horrible but I refuse to google anything because everything about this is individual and I refuse to get myself frightened by stuff that isn't relevant to me. I feel well, I look well and that is what makes everything seem so sad. I'm likely to be given drugs that are going to make me feel dreadful with absolutely no historical evidence to say that they will work. I get through most days by not giving my health ANY thought at all, I bury my head in the sand, craft like crazy and watch so much tv that my brain has become addled anyway. I used to work but I was the only person in the office and felt it unfair to keep taking time off for doctors appointments in Perth so I resigned...I intend to go and do some voluntary work when I've got my diagnosis/treatment sorted but I'm flying to Perth every 10 days or so at the moment. I am having a tough day today, hence the rambling, crying..nay HOWLING in the shower this morning and yet when someone asks me how I am I smile and say "really good thanks" I want to talk to my doctor but it's a two week wait if I want to speak to him...I've made an appointment anyway. I'd like some drugs that just knock my brain out of action so I don't have a coherent thought at all. I take half a sleeping tablet at night which stops me from waking up in the middle of the night, cos that's when I get the screaming ab dabs! Crikey...this entry is all over the place isn't it? but I feel better for having put it "out there" because then it's no longer inside me. If you've read it..thanks...... I'm not as crazy as this sounds.
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Frequent Contributor
Makes perfect sense to me. Not crazy at all. Loupylass? If you say so, but I doubt it. I have multiple myeloma and have had plenty of treatment, including all the things you have mentioned, in the last five years. Is your cancer a blood cancer too? As far as talking to other people goes, I don't have any rules about it. I do not feel compelled to "tell the truth". Nor do I feel as though it is my job to make things easy for everyone else whilst I dissolve into a puddle on the floor. I guess I have learned to sense what would work in a given situation. I do not have high expectations of most people, but I have a very small number of friends whom I know I can dump on and be listened to. That is all I need. I do not need everyone to be able to hear the whole thing, or whatever. I maintain a very small network for that (maybe two people, three at most). The other aspect of this is that they do not know that you are changing. They are seeing the old you, but you are feeling new things and seeing them in a possibly very different way. Life is different. Maybe you need to make space for letting things unfold. There are good counselling services around too. I make use of them all the time. That's part of my new life. Lots of my older friends do not have a clue about that aspect of my life and I don't expect them to. Nothing crazy about your post. Not at all. I recognise it, for sure. H
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Occasional Contributor
Ah Loupylass. I am with Harker. This sounds very familiar. It's not crazy in my opinion. I think of it more as the new world order, and yes grief stricken is a common theme in this world. And how about that living in the moment ?! I said to a really annoying person in my early days, I am trying to take it one day at a time like you are telling me to, but I am so scared right now in this day!! I too am very selective about who I talk to and how much I share. I remember a friend stopping me in the school yard at pick up time and grabbing my arm, saying But How Are You REALLY??! I was nauseous from chemo and looked sick, and I said - Great thanks but what about you? Are you Ok?? She was caught off guard and blurted out, I'm ok, it's not me whose got cancer! I think I went through a peverse time when I was capable of deliberately confusing people, which was new to me. Now I talk to one or two who know how to listen and who know that I am not asking them to fix me or things- that I just want some care. So hang in there Loupylass - love the name! This new world takes a bit of getting used to. For me there are moments of light and moments of profound meaning; I hope you find some of this for you. Take care. Zen.
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Occasional Contributor
Hi Harker, you were a bolt from the blue in the fact that I am being tested for Multiple Myeloma...but I haven't got it in my bones...just soft tissue which my haemotologist says is unheard of in her experience. I started out with a plasma cytoma on the base of my tongue which was treated with 5 weeks of radiotherapy...don't know if it's fixed it but it feels ok. Have another appt with Oncology next Monday. My proteins however started to climb so had another bone marrow biopsy which came back clear then had a PET scan which showed that bones and body is clear but my arms have a number of hotspots which I am going to have biopsied next week also. Haemotologist reckons the hotspots are more cytomas and she thinks I may have to have thalidomide/chemo/steroids to fix. (sorry haven't got up to speed with the drug names yet.) I am so bewildered, because my doctor is....I already have had a lump on my arm biopsied and it turned out to be an unspecified infection so I will just have to wait and see what happens next week. It is so good to be able to interact with others who understand my feelings and can empathise...I'll also expect someone to kick my bum if I come over all ridiculous too :) How are you travelling with this addition to your life (MM) I would really be interested to know how you learned to cope. Thank you again for your caring response.
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Super Contributor
I can relate to all said so far . Some people ,a friend warned me early on,care, when they ask how you are while others are just curious . It's hard to know what to say to which person on occasions . Sometimes the reaction you get from others can make you wish you hadn't said anything at all . My counsellor advised me to have a few one-liners ready e.g. "I'm ok. Thanks for asking " for those times when you don't want to tell someone your business. It's surprising at first that some never say a word when you'd expect them to do so but we all react in our own ways .
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Frequent Contributor
Hi Loupylass Sounds like the diagnosis still has a few stages to go through! It is weird to have MM in soft tissue rather than in the bones. How do I cope with MM? The most valuable thing I have done is to read a lot about the relationship between illness and identity. And write about that. To start with, we see ourselves as: healthy - illness = sick person I prefer to see myself as: identity - illness = new identity In other words in my equation I don't end up as a "sick person". That's how I cope. I am a complete identity as much as the next person. I am careful about being cast in the role of the sick person, because that disempowers me. Other people, medicos and carers, give you that identity, not yourself. This is the short version. I am aware there is plenty to read and reflect on. I learn from that reading then I set about making it up myself. That's the fun part! H
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Occasional Contributor
I agree with the fact that our health goes a long way to determining who we are perceived as and I also agree that I don't want that to be the case with me. I was listening to a talk the other day where it was discussed why we term an illness as having something "wrong" with us. We go to the doctor and say there is something "wrong" when in actual fact it is perfectly normal to get sick...whatever the severity it is a normal part of life's pattern. So I too am setting about changing my perceptions and working out my new life with whatever it is I've got! Have a great day! J
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Frequent Contributor
Good luck with it. Let me know if it is MM so we can compare notes. H
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