The strangest thing

[harker]

My parents are in their mid-80s. When I was diagnosed with multiple myeloma I knew it would have an impact on them, but I was amazed by how much my communication with them was rocked by the sudden introduction of a massive health threat into the family. I knew it was an unnatural situation. I have four children, their grand-children, so I instinctively knew that they would be having the most abhorrent thoughts. For me, aged 52, the thought of out-living one of my children was too horrendous to contemplate. I certainly would not enjoy living with that sort of grief. So, I understood that it was much like that for them. But it wasn't easy for me to manage. They came to see me in hospital and brought an old letter I'd written from outback Western Australia in 1973. It was a young loving son's homesick letter. They reminded me of it then left it with me on the hospital bed. I sensed that they wanted me to do it all again for them. We chatted on for a bit, then Mum said "Would you like to hop into bed?" I'd been in the room for a week, mostly doped up and out of it lying on the bed. I'd only just started taking visitors. I knew where the bed was, when I needed it! After they left I held the ragged 34 year old envelope in my hand and thought about what had just happened. I started to realise that they were both seeing the situation entirely from their own points of view and did not realise the impact their gestures had on me. Over the next few months, an emotional gap became evident. Mum would ring up and say, in her most quivering voice "Has there been any progress, darling?" The answer being "No" only made things worse. Another time Dad wanted to know how I felt about the lack of progress of my treatment. The tone he used when he said it alarmed me. His question was put with real frustration. I realised he really wanted to say to me that he was frustrated by the lack of progress. Frustrated by MY lack of progress. These were not good feelings. The worst of it was realising that they saw me as an extension of themselves and not as a separate person. I started to see that, from their point of view - putting it bluntly - it had happened to them. And it was hurting them. Me having cancer was the cause of them feeling hurt. Hence their urgency to know what I was going to do about it. What was my plan for stopping their hurt? With that realisation I finally understood why I was reacting to them. At the time every instinct I had was being channelled into surviving each minute, each poisoned hour, each blood level crash and recovery. Everything I said and did was about living as best I could. I just had no capacity to make it better for them. Since remission I have drawn a new line around myself. Inside it, I smile knowingly because my life is the best it has ever been. I am happy and engaged. I am in love with my wife who was forced to set a carer's course on her own. I have adult children who have eyeballed fear and I am so proud of them. I now venture out with more compassion than I have ever felt and shown before. But that line stays there. I know my own territory now. It's so healthy. Drawing and redrawing my line is a big part of living with cancer.

[AmandaC]

Thank you for sharing your story. My mum had very little contact with me when I was ill and cried to everyone we knew that I was possibly dying....talk about self absorbed. I was also treated like I had done a bad thing getting cancer and got so sick of people acting like they were all to fantastic to get it. I like the idea or re-defining the line...that is where I am at now. My boys are only 3 1/2 and 14 weeks but my 3 1/2 year old really has been through alot and truely understands the importance of life. I'll bet your children our well rounded, fantastic young adults and how great you and your wife are embraking on the next stage of your relationship and still really inlove 🙂

[stevec]

Hey Harker, we must have posted almost at the same time last night! I've just spent hours thinking about your post. I had the same issue with my mother as you had with your parents, only it manifested itself if different ways. The first thing she said to me when I told her about my diagnosis was 'well I think your father handled it particularly well'. He had died from cancer about 2 months earlier and he'd kept to himself about it, I didn't know how serious it was until about a day before he died (and she didn't really know until then either). I was completely open with everyone about my issues from the start and she must have seen this as a sign of weakness in me. I think that deep down she thought that dad deserved some sort of reconitition for what he'd been through and that I could provide that by being a complete mess over having the same thing. I couldn't have a conversation with her about anything without some kind of reference or comparison to him being brought up. She was quite offended when I refused to use his slippers and dressing gown during my first hospital stay (which involved a fairly large and risky operation). The gravity of the situation must have hit her about a month after I was diagnosed and had just finished my first round of chemo. I'm not sure what did it, perhaps coming to visit me in the oncology ward for the first time, which was as I was getting ready to leave after spending 10 days there (I'll never forget walking under the big 'Oncology' sign for the first time with an overnight bag). But at that point she decided to take 3 months off work and come and live with us. I spent a lot of time with her during chemo and really, it was completely for her benefit. She still talked non-stop about my dad, but also started telling me about every single death story she'd ever heard of ('so and so' (a 90 year old friend of my grandparents) died, 'did your hear that Sir Edumnd Hillary died' (I'll never forget that one) etc.). She also told me about all the symathetic conversations people were having with her (people that weren't talking to me). I think she'd resigned herself to the fact that I wasn't going to make it, even though everything (bloods, scans, oconogists opinions) was overwhelmingly positive. She was building herself up for the next stage of her personal tradegy and had no-one to talk to but me. To me she was clearly mentally ill at the time and needed help dealing with what had happened with my dad. But all her friends and the rest of our family (including my brother) wouldn't deal with her, and she refuse professional help, so she came to me (and I let her). When I look back now I can almost laugh at the irony of her building herself up for my death, not only infont of me, but exclusively to me. She now tells me she didn't handle things well when I was sick. I tell her it doesn't matter and it doesn't. Its over now and I can't change it, but more importantly I've realised I can't change her and I can't fix her problems. Like you, I've now feel like my life is the best its ever been. I'm healthier than ever and I can see more value in everyday things than I ever knew existed. I also know my own territory well enough now to know when lines are being crossed. Thanks for your post Harker. Your a beautiful writer, keep it up!

[harker]

Thanks stevec It was quite a challenge for me to post that item. I have not written about my family like that before. I have written and published a lot in other areas, including many autobiographical pieces, but nothing that exposed me quite like this. It was confirming for me to read your thoughtful piece in response. Now I feel even more assured in moving along in the direction I am now choosing. There is some significant grief that accompanies me, because of changed relationships, but that won't change my direction. Other people have their own direction. I will try and respect that as, at the same time, I make a point of respecting my own direction. That's pretty new for me. It's really very therapeutic to write this. Thanks.

[stevec]

Hey Harker, It was hard for me to write about my family too, I've never really spoken to anyone much about how they've been, other than Amanda, but she was there through it all anyway so she doesn't really count. Part of me feels bad for putting it out there (especially with my photo attached) and I think that part will always be there, but I've learned that I need to do these things and that I have as much right as anyone. Your right about the therapeutic value of writing. I'm definately someone who works through things by writing them down. Steve

[Michelle]

Hi Steve, Just had to say that your reply to Harker's post came through my inbox this week and I had to respond to one point you made. The way you described your experience walking under the oncology sign hit me so hard. My time with lymphoma and treatment is pretty blurry in patches, but nothing will erase from my mind the memory of having to wait for a nurse whilst standing under a huge oncology sign. It was before I was diagnosed, I was waiting for a bone marrow biopsy. I knew I was very sick but absolutely freaked out when I read what I was standing under. I wanted to scream that I didn't belong there, that I wasn't old, wasn't ready to die, etc. etc. I felt terrified and trapped. When the poor nurse tried to insert a line into my hand my veins had all but run away funnily enough, they sedated me in the end. Will never forget the finality of that sign. On the funny (??) side, when I did land on the chemo ward a week later, they were smart enough to call the ward 'acacia' instead of oncology. Not sure what wattle trees have to do with being poisoned half to death to escape death, but anyway... It means so much to me to see others understand because they've had similar experiences. Thank you, best wishes, Michelle

[stevec]

Hey Michelle, The oncology sign still freaks me out. The moment I had to walk into that ward carrying an overnight bag will live with me forever. I'd been out of hospital from major surgery about 2 weeks when I was called in for chemo. At that point I'd had surgery in another hospital and had only been handled by a GP and surgeon. I hadn't seen an oncologist, but I was really keen to get everything underway because I had a pretty rare case that no-one knew much about other than 'its really agressive'. Later I worked out that agressive can mean treatable, but initally all anyone would say is 'you might not want want to know too much more...'. I was feeling great despite the fact I'd just had major surgery. They'd removed all of the cancer that could be seen in me (a large tumor), my energy was returning and I had no nausea for the first time in over 6 months. It was the middle of summer and all I wanted to do was go to the beach with my family. The hospital called and told me I had to be admitted for a day or two to be assessed for chemo and that this would happen in about a week. The next day they called and said 'please come in right now' which freaked me out, but I called back and found it it was just because a bed had become available and they wanted to fill it asap. I'd been diagnosed about a month before and I'd been through all sorts of thoughts about what the future may hold, but walking under that oncology sign still hit me like a ton of bricks. It just felt wrong. I was led to a 4 bed room with 3 other people over 70 years old (2 on respirators and 1 with advanced dementia). It felt completely surreal and highly disturbing. Amanda was with me and I told her to go home because there was just no point in her going through it too. I spent the rest of the day there, lying on my bed in my relatively colourful clothes and sneakers, with product in my hair and more colour in my face than I'd had in about a year. Every few hours a nurse would come in and check on everyones meds, whenver they got to me they'd say 'are you sure your on NO medication? oh, well that'll change'. Later that night I was moved to a private room, which was a massive relief. I'll never forget the first few hours I spent in a shared oncology-ward room either. I found out later I'd been put in with the sickest people there while my room was being vacated (which had taken about 12 hours longer than they'd thought). I ended up staying in hospital for 10 days, the first 5 were just to have a series of tests to determine if I could handle chemo or not, then 5 days of actual chemo. I looked very out of place during that whole time, but once I was tethered to a drip people stopped treating me like a visitor and telling me off for using the patients-only tea and coffee. Thanks for sharing your story. Steve

[Michelle]

It's true that you can be most alone in a crowd. I was lucky enough to be in a private room throughout my treatments but for the actual chemo days I was in a big room with lots of very sick and very old people. I just shut down mentally, I felt so out of place and alone. I wore this one bonds hoodie every chemo day so I could pull the hood over my eyes, put my headphones on, and hide for 10 hours. It's amazing what you said about staff confusing you for visitors because I think that totally sums up what happened to me/us all? - "What the hell am I doing here??? There must be a mistake". I appreciate you writing about your experiences. I just read a message from your Amanda earlier and I'm stunned by what you've both been dealt. Your patient-only tea n coffee comment is so funny because it's so true. I think we all should have kept a book of quotes of the ridiculous things people said/say, to help us laugh at it 🙂

[AmandaC]

Michelle funny you say there should be a book on rediculous things people say to you during treatment there is a girl called "Tracey Hinde" on PC who is writing a book called pet peeves and its all the stuff we talk about going through and people say and do to us. You should gte onto her to add to her list 🙂

[samex]

Hi guys, I'm new to all this but some of it is so familiar. It is intersting to relate to the difference I found from being a surgery patient (emergency hemi-colectomy) to 5 weeks later walking into the oncology clinic by myself after having had a picc line put in. Suddenly, I was a cancer patient and all of my friends who had cancer had either died or were dieing. I felt very scared and very alone. After 4 hours, I just felt sick and as you guys all know, that went on for months! Regarding family, my then 18 year old didn't want to know about it and still doesn't talk about the cancer time.His way of coping was to not deal with it. My then 13 year old was my rock and he often still is. My husband was and is great, but I think he feels that it is all over now so let's just get on with it. I find this a bit hard at times. You guys with young families are amazing - my heart and hat go to you, Samex