Update on Missed a beat or two

Hi everyone, Well I have been in to visit my Oncologist and the Haematologist today. My Echocardiogram shows a slight drop in heart function in my left lower ventricle but the angiogram results were clear as was the heart X-ray and blood tests. So my Onc says at this stage she doesn't think there is a need to stop Herceptin so that went ahead today as planned. I will need to have more tests next month though. The 24 hour heart monitor results won't been known until mid next week but I think all they'll find is evidence of an ectopic heart beat that I've had for years. That's the good news I suppose. Curious that I seem to get good news but then there's some bad news hard on its heals. So the bad news (not too bad though considering) is that my Haematologist told me I have to continue with those bloody awful daily Clexane needles at least until I finish Herceptin which is the end of May, another 6 months after being on them for 10 weeks already. She also said that I'd probably be on blood thinners indefinitely but she'd look at the oral form, maybe warfarin, after May. So there goes my showing off my legs (AS IF!!!). With all the bruises on my thighs, I look like a grotesque, deformed kind of half leopard. No swimming for me! I asked if I could have the needles in my tummy but she was very reluctant to agree with all the scar tissue from my reconstruction surgery. I'm still as tight as a drum there anyway so no fat to grab hold of. More than I can say for the thighs. So best not we think. So ladies I will have to chant my mantras and say 'oh well' and 'go with the flow' and take it 'one day at a time'. I do know that I am a lot better off than some so I can't complain. Something to smile about though is that I braved it and went without my scarf in public for the first today even though my hair is really still too short and I am not liking the grey at all. Although I felt quite insecure without my scarf (it's been like a sort of security blanket) it also felt invigorating. I stopped thinking about my head after a while and just 'went with the flow'. I also had my first hair cut yesterday, the equivalent to a short back and sides LOL, nothing at all off the top. That's it from the half lady, half leopard. Perhaps I might join a circus ;) Love to you all Janey xxx

Janey235
Member
12 years ago
Glad your back on board. Love Janey xxx
Stemgirl
Member
12 years ago
Sorry to hear there's been another bump along the road to recovery. xx
Janey235
Member
12 years ago
Who said "Patience is a virtue"? Sometimes 'patient' is so bloody hard to be isn't it. But there isn't anything I can do to speed up the process and being impatient doesn't solve anything. As you say we've all had to play the patient game through this journey, we have no other choice. Love Janey xxx
Janey235
Member
12 years ago
Thanks Leanne. Glad you've found you way to the general posts. Love Janey xxx
Janey235
Member
12 years ago
Never thought of myself as a good writer but I do love helping people. Makes me feel good :) I never bothered to get a wig. It was last February that I started trying them on and I got so hot and bothered that I decided not to get one. I just try and make my scarves as interesting as possible making little rosettes and contrasting two scarves together. But yes it is a dilemma when the weather gets hot. When I get home after wearing a scarf all day, the first thing I do is rip it off. Yes I guess in the scheme of things we should be glad we are well. But you'd agree that wellness is also how we feel emotionally. It's such a big thing to take away the security of a head cover and reveal to the world our bald heads. I have an aunty that has suffered from alopecia for many years and she just goes around completely bald. She gets lots of stares and I so admire her for her attitude. Never thought I'd be in her shoes. I couldn't possibly have bearded my bald head in public. I'm much to vain for that. I really have to get used to grey hair though for the time being and stop worrying about what other people think. There's nothing I can do about it yet. It's quite ironical that we were discussing hair at work just before my diagnosis and how much dying hair costs but I said I wasn't ready to go grey. Well now I have to accept it don't I. I've always been told I look young for my age and I've have been pleased but I think that is in the past now. Grey hair certainly ages you. Oh well! Acceptance is the thing to do now. I'll stop rambling now. Once I start it's hard to stop :) Enjoy your Christmas parties Deanne. Love Janey xxx
Janey235
Member
12 years ago
Thanks for you lovely words. I am so chuffed to be a part of our wonderful group of Pink Sisters and am very happy if I can help others. My thighs can get sore sometimes. I find laying on them a bit uncomfortable. Sometimes the injection site gets a little hard lump and it takes ages for the lump to go away. I am massaging them with Bio Oil and Vitamin E cream to dissipate the bruising. But it's hard when I just keep putting more bruises in every day. As the first part of my day without my scarf was to Peter Mac hospital for treatment, I didn't get any stares as most people were probably quite used to seeing this. Later when I went shopping I didn't notice anyone staring but I'd forgotten about my head at that stage. Now the weather is starting to warm up I don't think I'll care who stares. I'll just be happy not to be hot :) Love Janey xxx
leanne_29
Member
12 years ago
I remember the first time I went topless as another friend of mine called it . I was still bald and like Deanne, I used to leave the house with out head wear and I got sick of having to go home to get one. My wig also made me hot and Robyn I also had Clexane injections for 6 weeks due to a blood clot from my PICC line Take care everyone Love Leanne xx
Deanne
Member
12 years ago
I'm glad it was mostly good news Janey. I can't wait to have enough hair to get rid of the headwear. I keep walking outside without my head covered and then realizing and hoping no one saw! I have a few Christmas parties to go to starting tomorrow and I am in such a dilemma about whether to wear the wig (gives me a headache and is hot especially with a hot flush or too!) or one of my turban hats. Ahh I should just be glad I am well enough to go! Take care. Deanne xxx PS I read your comments on Bobbie's post. You are so good at expressing exactly how it feels in those early days. It was very empathetic advice which I am sure was appreciated and really helped.
Deanne
Member
12 years ago
I'm glad it was mostly good news Janey. I can't wait to have enough hair to get rid of the headwear. I keep walking outside without my head covered and then realizing and hoping no one saw! I have a few Christmas parties to go to starting tomorrow and I am in such a dilemma about whether to wear the wig (gives me a headache and is hot especially with a hot flush or too!) or one of my turban hats. Ahh I should just be glad I am well enough to go! Take care. Deanne xxx PS I read your comments on Bobbie's post. You are so good at expressing exactly how it feels in those early days. It was very empathetic advice which I am sure was appreciated and really helped.
Robyn_W
Member
12 years ago
Janey,it is the people like you that make this online network the success that it is.You set such an example,with your sense of humour,your empathy and your logic.I personally would hate to be on daily clexane needles.i had 6 of them in the hospital,and I thought that was bad enough.I had bruises from that so I can only imagine how you must look.Are your thighs painful Janey?Did you get many 'looks' without your scarf?I am getting quite tired of having to wear something on my head all the time,but there is no way I could go bare headed .When it starts to grow back,I will brave it pretty quickly I think though.I hope you get a good result from your monitor Janey.Take care .xoxoRobyn