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  • racy
    racy Member Posts: 976
    edited April 2013

    Kylie and Ariom, I had Mondors for about a week. I still have other post radiation effects.



    Yay Chrissy and other ladies! We will have fun in Sydney!

  • chrissyb
    chrissyb Member Posts: 11,438
    edited April 2013

    Sue, any particular time to ring?

  • mandymoo
    mandymoo Member Posts: 632
    edited April 2013

    Hi everyone, I have been lurking for a while and trying to keep up with all the news but not contributing.

    Angela, my thoughts and prayers are with you, and I hope that we hear from you soon. 

    Alyson, I hope that you soon recover from your bout of pneumonia. It is bad enough dealing with cancer let alone anything else on top of that. 

    Trhisa-Anne, I hope that you get over your cold, I guess that it is that time of year again.

    Annette, I am glad that you have finally had your tooth pulled out even though it was quite expensive. Your health and comfort is more important than money, anyway. Chrissy, I soooo very pleased that you have had good news about your daughter and it must be reassuring to know that the doctor will keep an eye on her as well. 

    I have had a lot of scans done in the past few weeks and my news has been quite mixed. Overall, I say that I am quite happy with the results. CT scan showed that tumors in the liver, lungs and brain have shrunk since the previous one in November. MRI, also confirms that the dreaded Leptomeningeal Carcinoma has reduced. Bone scan, however shows progression in the skull, spine, ribs, shoulder joints and hip joints as well as humerus and femour??? and X-rays done late yesterday to see if there is a risk of fractures in the hip or shoulder joints because they are quite extensive. NO SYMPTOMS, so I am not worrying. I saw the oncologist yesterday as well and I am now also taking denosumab.  I will get the Xray results tomorrow. 

    I have spent the past few days with my daughter and grand daughter and am now happy to be home having a rest. (Looking forward to the end of daylight saving as well. lol)

    CheersSmile

    Mandy xox

  • suzieq60
    suzieq60 Member Posts: 1,422
    edited April 2013

    Chrissy - Annie said there is a nice cafe down the road from her place - I'll PM you her address - easy to find - off Goodwood Road near corner of Cross Road. We thought of going in to the city, but she said parking can be a pain.

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited April 2013

    Hello everyone

    Chrissy - what fabulous news! Yay!! I'm so pleased for you and your DD

    Annette - hope your mouth is feeling a lot better today - getting a tooth out is no fun, but at least it won't hurt you any more :-)

    Mandy - I'm sorry to hear about your news, although some of it is good - so Yay! for that.  I vaguely remember you saying you were coming to Sydney too?  And driving up?  Did I imagine that? lol

    I'm getting a bit better every day, still coughing a lot, but my head seems to be clearing a bit, which is good.

    Thinking of you all

    Trish

    xoxo

  • Alyson
    Alyson Member Posts: 3,737
    edited April 2013

    Morning all.

    Trish so pleased you are getting better but please please be careful. I had cold/cough and thought it was fine but now I have pneumonia. Look after yourself. I hope I can get to Sydney with you others, Chrissy said to talk to you as you were looking into accommodation. I may even try to get to see my cousin in Canberra. That will depend on finances.

    Mandy sending big hugs. And Annette I hope your mouth is feeling lots better.

    Must go and get into the shower

    Chrissy take care, was so pleased when you let me know about your DD.  What a day it was yesterday. You have a great day with Suzie and Anne

    Hugs to all

    Alyson

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited April 2013

    Hi Aly 


    Yes - mum, I promise I'll look after myself :-)

    I'm hoping to get as cheap accommodation as possible, will be looking into it in a couple of weeks.  If you do come to Sydney and need a lift to Canberra I'll be driving and happy to give you a lift if that helps?

    Cheers


    Trish

    xoxox

  • midnight1327
    midnight1327 Member Posts: 1,331
    edited April 2013

    Hi girls, hope everybody is ok today. My mouth is feeling alot better, had my Mac cheeselast night and it was lovely, but hard to eat as my throat was quite sore and a long my jaw, but the yogurt was lovely and really was cool and soothing, i may have some scrambled egg for lunch, be nice, i love scrambled egg, i just do it in the microwave. The dentist which was a different one yesterday than the weekend one, but he was feeling around my jaw and just checking before he injected me, and also mentioned a prominent swelling in my neck and that he felt was not related to the abcess and also asked if it had been seen by GP and i told them yes, i had to swallow water and he felt my throat ie Doctor and the other dentist said, the same on sat. They say i have enlarged  thyroid, but as i have not got onethe thyroxine tabs keep me alive, but am wondering if i have swollen  lymph nodes and the iron low etc, just hope it is not anything sinister. i am wondering about this body being like it is,they not going to commit themselves til  they know i guess.  i am between a rock and hard place. try not to think about it. But it is at the back of my mind and  everything is an effort.

     I have to get more interviews set up and i can't be bothered with it all, but i have to, have a few rung up and need to set up interviews with them. so i will do that later, have to call these students about helping with the alpaccas on sat, got two that maybe interested. so everything an effort to me and i hate it.

    Mandy i am sorry that you have progression shown from the bone scan, but glad other areas are better. What is that other Leptomenigeal carcinoma, hope you don't mind me asking, i have never heard of that before. am interested in just knowing where abouts in the anatomy it is.

    well guess i better go and do something other than sit here. so will look in later, cheers girls

  • mandymoo
    mandymoo Member Posts: 632
    edited April 2013

    Hi Annette, I am glad that you are on the mend, enjoy your scrambled eggs (Yummy!!)

    I have 3 tumours in the brain (or actually the lining of the brain), one above my left eye, one in the middle at the front which seperates the left and right brain, and lucky last, the dreaded Leptomeningeal carcinoma (or something like that) which is on my right side. The lining of the brain has 3 seperate layers, I believe, and I am not sure which layers any of them are in. The prognosis for LM is extremely poor, but Xeloda is a drug that can go through the brain barrier and it is working, so yippee!!!

    I have some episodes of mild confusion such as reading all the updates on this website as an example, and then my mind goes blank. Also someone can be telling me something and I completely understand everything, and then the next minute I have forgotten everything. These episodes dont last long, and I find that if I do one thing at a time and concentrate on it, then I have a better chance of remembering. I write a lot of things down and that helps to bring back my memory (lol). I am not sure if others can relate to this, but until November last year, I did not have this problem and I was studying at Uni getting distinctions and credits. I am not going to Uni anymore, because I have lost that ability to retain information. 

  • midnight1327
    midnight1327 Member Posts: 1,331
    edited April 2013

    Hi Mandy, thankyou for explaining that. that must be very fustrating for you. Do you suffer  from many headaches with this, as there would be pressure there  i would imagine? Gee i feel for some of you girls. sometimes i get concerned with my elments, but compared to you ladies, i have got off lightly so far, i do have issues, but i still am able to get by at this stage. I see the neurologist tuesday, my mri was clear, so i did not think i would be seeing the doctor. But i am not  turning down the appointment, i will see everyone they want me to see. they take so long getting to  see them. The scrammbled egg was yummy. lovely and soft.  thankyou for yr answer to my question Mandy. Great big hugs xxxxxx

  • Tammy_M43
    Tammy_M43 Member Posts: 565
    edited April 2013

    Mandy, sorry that along with everything else you have has to give up Uni when you were doing so well..... All power to the Xeloda!

  • mandymoo
    mandymoo Member Posts: 632
    edited April 2013

    Hi Everyone, thank you for your concerns, Midnight and Tammy and everyone else. 

    Midnight, I only started getting headaches and some confusion a couple of days before I was hospitalised with Pleural Effusion in November last year. The headache went away after a couple of days and less than a week later, I was told of LM in the brain and was put on steroids?? My blood sugar went up, because of that, and I dont suffer from Diabetes. Apparently that is a side effect of the steroid, so I refused to take them anymore. Luckily, the headaches did not come back, so I think that everything got caught quite early. If it was not for that Pleural Effusion, then I would not have had all these different types of scans and I would not have known of any progression into the liver, lungs and brain. And believe me, Midnight, I think that my quality of life is excellent as I have no symptoms at all, unlike poor you with your low blood count, tiredness and other things that I consider that those issues are not being folllowed up in a timely manner by your doctor and/or Hospital. You are in my thoughts daily, and I admire what you can still do despite all your challenges. You are an inspiration. Smile

    The only things that irks me about having Cancer is getting DVT and lymphodema and all the side effects from the Xeloda, but I consider it a good trade off for a longer life. Wink

  • midnight1327
    midnight1327 Member Posts: 1,331
    edited April 2013

    Good morning ladies. it is rather cool this morning.Grrr. the wind is very cool.  Hope everybody is ok.

    Thankyou mandy for that encouragment, my mother tells me i am a very strong women born of good stock she says lol, i don't feel very strong, i am dreading those alpaccas tomorrow, bit we have employed  two young men, so i will be handing most to  them to do the work, and i will just assist when needed.

    The Hospital rung yesterday to see if i had all my instructions for the colonoscopy and no i have not, they sent it out end of feb, flaming mail, we have not been getting stuff, we wait for ages for things, that should take only two days, its  really annoying and concerning as those things that are medical are very important and i may miss out appointments because of it, like they get sent out and don't arrive. so she sending out again and if i have not received it, i will go and see her and she will give me another copy. We still waiting on Bil Bank card as he opened a new account three weeks ago and it is coming to ours as it was the most realiable address til lately. the mail is pits now, they cutting down as so many people use enail, but there are still things that need to go in ;post and be delivered. anyway i am about to have  pain tab as my tooth a little tender today, i never took them last night as it was not sore, so left it, but it is now.  catch you later. girls xxxx

  • Alyson
    Alyson Member Posts: 3,737
    edited April 2013

    Morning all

    Have just spent last hour or so on the nebuliser at the docs has made chest feel better - I won't say what the stuff I coughed up was like!!! Have more steroids and a second antiB to cover all bugs. Have to go back up later.

    Annette, I really don't know what is going on in your part of the world. Now look after that tooth.

    DDs are about to arrive with coffee and lunch.

    Big hugs to all.

  • kyliet
    kyliet Member Posts: 587
    edited April 2013

    Annette, I hope your tooth feels better soon.

    Jenn, my new onc is Matthew Wong. He has been at RNS and just moved back up here. Hubby came in and he was terrific. Quite young and up to date with everything, highly recommended by nurses.

    He is sending me for more scans for the lump under my breast. He wasn't impressed with the quality of the US and mammo I had in Jan. He thinks it is scar tissue but will send me for MRI if we don't get clear answers. It was lovely to have every concern seem really important and said if 'anything' worries me we will look into it. 

  • midnight1327
    midnight1327 Member Posts: 1,331
    edited April 2013

    Lol me either Alyson, but the special package arrived this morning, so everything ok with that, if she had not rung me, would of been abit of a disater, mind you i was starting to think i would ring her and see if they had sent it out. My tooth feels better once i took the Panandine. hubby had a headache and i gave him some instead of panadol, headache left rather quickly which was good.

    Glad your chest feels better since nebuliser. My Granparents used to have breathing issues, esp Grand father and we used to have give him the head over the bowl with teatree oil in the water, man it cleared your nose with out putting your face in it, strong, he reckons it used to clear him out, i would think it would take  the breath away, stronger than vicks.left an odour in house, but actually quite pleasent. Those were the days,  i miss whangarei, better than down here. all my freinds are there too. i don't hear much from them, i text them and and i get a reply, but its not on going.meaning they don't want to get into conversation and i have noticed that since my BC Dx. i hear that does happen. Never mind i have others in my life too down here, but palmerston north would not be my chosen place to live. oh well catch u later.

  • midnight1327
    midnight1327 Member Posts: 1,331
    edited April 2013

    Well Kylie looks like you and jenn are set up nicely with these new onc's, very glad you have both found somebody that will work with you, so you had a very good first date too lol kylie. kool, well i must go and do these dishes, has  DS got his plaster off yet? i bet it has writing all over it, has he?

  • kyliet
    kyliet Member Posts: 587
    edited April 2013

    Annette, DS plaster on for another 6 weeks, it was a big break. It is like having a toddler around the house again.

  • midnight1327
    midnight1327 Member Posts: 1,331
    edited April 2013

    gosh it must of been,  well i hope it heals as quick as it can. I guess you have to help with his bathing cares too. well hope it all goes well.  take care.

  • mandymoo
    mandymoo Member Posts: 632
    edited April 2013

    Alyson, I hope your chest improves soon. Is the GP going to take an xray of your lungs, just incase it is cancer related??? I was just wondering, because that is how they picked up my pleural effusion. Take care, and I hope you will be on the med soon. xoxox

  • Alyson
    Alyson Member Posts: 3,737
    edited April 2013

    Yes Mandy I have to get a chest xray. About to go back up to have another go on the nebuliser and the want to see me again tomorrow.

    Kylie, I laughed when you said DS is like having a baby around again. When DH had all his heart troubles he was great when he has a cold he is on deaths door. Can DS get around?

  • suzieq60
    suzieq60 Member Posts: 1,422
    edited April 2013

    Having a lovely visit with Chrissy - great lunch and great conversation on a lovely Adelaide day.

  • mandymoo
    mandymoo Member Posts: 632
    edited April 2013

    Suzieq60, Enjoy your lunch with Chrissy and say hello to her for me. Yes, the weather is absolutely superb today. If I had known earlier, I would have met up with the 2 of you. Oh, well, perhaps next time. xoxox

    Cheers

    Mandy 

  • melp27
    melp27 Member Posts: 295
    edited April 2013

    had a job interview today and got on well with the manager. its at a tavern but doing their office work. the last lady who was there only stayed three months and then got offered a better job and left them in the lurch. he didnt ask me the usual interview questions it was more about can I get along with him? he does get angry and swear sometimes but he can also be very compassionate. was laid back to a point saying it may take 4 days per week to learn the job and then it could drop back to three days after a while. my main concern is not acting too desperate and taking the job just because i want to get out of the government system so bad.

    i want to say i could do it because i think it could be a good place to work and i think i can do what needs to be done. thing is im not 100% sure i could handle going from what im at now to 4 days a week of work both physically and mentally. he hasnt offered it to me officially because he still has one more person to interview but he said ring him sunday and let him know what i think. 80% of me says yes go for it but there is some hesitation about if im ready for that.

  • midnight1327
    midnight1327 Member Posts: 1,331
    edited April 2013

    Trish. How are you doing? Hope you are feeling better and kate and linda hope you girls are ok,

    Chrissy, hope you had a lovely lunch with suzie. sounds like it was fun. lol did you have yr iced coffee, my fav  drink.   catch you all later

  • aussie12
    aussie12 Member Posts: 421
    edited April 2013

    Hi all

    I had my first fill today, I got only 50ml put in, it felt a bit tight at the end but hasn't been sore yet. I go back next Friday for next fill. I'm back at work monday after being off for 6 weeks, I went their today and they seem good about what I can and can't do. I'm sorry to say that I haven't really missed work and it would be good to not go back.

    Melph best wishes with what you decide to do, I'd change my job tomorrow if I could.

    Midnight my favourite drink is iced coffee or mocha drink, mochonna in packs of 10 you make it up yourself, yum.

  • mandymoo
    mandymoo Member Posts: 632
    edited April 2013

    Aussie12, That is fantastic news. How exciting, and I hope you don't have too much discomfort. Good luck with your work, too. It may take your mind off thing, though.  It is a weird feeling after coming off cancer treatment and you then have to get back into the real world. There does not seem to be much support for people once they complete cancer treatment and they are NED. Anyway, this is your next part of your journey, and I hope your breast reconstruction will allow you to move forward and onward. I have never tried mochonna. Are they in supermarkets in packs of 10? I would like to try them as they sound yummy. 

  • suzieq60
    suzieq60 Member Posts: 1,422
    edited April 2013

    Sorry Mandy - I forgot you are down here - problem is my DD is having some dreadful problems with her husband at the moment and it was probably best you weren't exposed to the whole thing.

    We had a great luunh and Chrissy got to meet my grandson - I was jealous - he only had eyes for her while she was here.

  • mandymoo
    mandymoo Member Posts: 632
    edited April 2013

    Hi Suzie, no problems, I wasnt aware of that. I hope things are a bit better now. I hope you and Chrissy had a great lunch and your grandson sounds gorgeous. We will meet eventually, I am sure, and I am hoping to meet some of the others at the end of the year in Sydney. 

    Cheers,

    Mandy xoxox

  • suzieq60
    suzieq60 Member Posts: 1,422
    edited April 2013

    When we come down in happier times, I'll make a point of coming to meet you - I love Victor Harbour.

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