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  • velo
    velo Member Posts: 16
    edited October 2019

    Hi Moth and Marian -

    Thanks for the welcome. Yes I had my previous tx in Victoria. MO not very emphathetic. But he does return calls if I have questions.


  • cathy67
    cathy67 Member Posts: 411
    edited October 2019

    Hi ladies!

    I was referred by moth to this forum, so grateful we have this one in Vancouver.

    I will spend time to go through all what you were discussing, but it is holiday now, busy around.

    So, can anyone tell me your gathering details? Just in case, I don't have enough time to find it before the meeting time. By the way, I am in richmond BC,

    Catherine

  • moth
    moth Member Posts: 3,293
    edited October 2019

    Hi Catherine - yay you made it over!

    We're looking at Saturday Nov 23 1 pm at Cactus Club, Broadway & Ash.

    I'll be posting an RSVP surveymonkey in a second :)

  • moth
    moth Member Posts: 3,293
    edited October 2019

    Can everyone pls RSVP by clicking here https://www.surveymonkey.com/r/Z9N3LHQ

    I'll make reservations in a couple weeks once we have some numbers.


  • cathy67
    cathy67 Member Posts: 411
    edited October 2019

    Hi moth,

    I am preparing for chemo. Are we using port or picc for the chemo, if 8 rounds, do you pick up this option?

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited October 2019

    cathy67, I had a port for my round of 8 and loved it. I had a Bard Power port then (2012/13) and have now now. The Pics is more hassle though probably less costly. For showering, you have to cover or detach~~not sure as I never had one. The port can also be used for blood work, I have mine done through my port and am about to get that done. The lab tech leaves it accessed for my chemo tomorrow. Pokes are almost impossible so if your veins are also poor, then a port is a godsend.

    Marian

  • moth
    moth Member Posts: 3,293
    edited October 2019

    I never had a port, just had an IV started each time. I'm not sure what criteria they use for ports but it wasn't even offered to me

  • cathy67
    cathy67 Member Posts: 411
    edited October 2019

    marianelizabeth,

    Thanks. It took a while to put IV into my arm during surgery day, nurse said my vessel is hard to find, I definitely will pick up port. Not sure if insurance covers or not, hopefully.

  • cathy67
    cathy67 Member Posts: 411
    edited October 2019

    Thanks moth,

    It sounds lots of stuff to do for chemo preparation. I did lots of shopping for surgery, then found most of them are useless, I can spend through very easily. Hopefully, this time, my preparation is also useless, but still must prepare.

    Another question, ladies in Vancouver, where I can find wig, I want to try on myself, thanks. Have candidate, once decision is made, go and buy it.

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited October 2019

    cathy67, I bought a wig at a recommended place in North Van. It cost about $550 and I wore it 5 times. This time I had it cut and styled and wore it once. It does look good, but I find it oppressively hot, with frequent hot sweats. The port should be covered and if you have poor hard to find veins then it may be recommended. Moth, you probably have good veins and I suspect there are more people on chemo who do fine without a port. As for preparation, Moth can you think of anything special? I start chemo again today at 3:30 and tomorrow I have a PET/CT scan. I look forward to it in hopes of finding out what made the pain so bad recently.


  • cathy67
    cathy67 Member Posts: 411
    edited October 2019

    HI Marianelizabeth,

    Thanks for the info. You only wear wigs five times? But your ACT lasted at least four months. Mine is always short cut, very simple black hair, hard to find such style in wigs store, all are too fashion. I just don't want others feel strongly that it is a wig.


  • moth
    moth Member Posts: 3,293
    edited October 2019

    Cathy, I wore my wigs < 10 times altogether & my chemo went on for over 5 months altogether. I rocked being bald and beautiful! I didn't even buy my wigs until I was pretty much finished chemo & really if I hadn't been going back to school, I wouldn't have bothered. As it was, I really only ended up wearing them in a couple situations where I didn't want to explain things or it wouldn't have really been appropriate for my illness to intrude into the setting. And I wore them a few more times later when my hair was starting to grow out but hard to style; but honestly, looking back, I should have probably just not bothered (though my wigs were kind of fun). I got my wigs online.

    Mariane - chemo prep, hmm. I think my list would be:

    A binder to keep track of documents and keep your own chart of symptoms & what meds you're taking when.

    A folder in the binder for insurance & tax receipts. Some things are not covered and can be claimed either through extended health or on your taxes or both so keep all the recepts

    All the meds that are prescribed (plus alcohol swabs and a sharps container if you have to self inject grastofil or neulasta)

    Softest toilet paper or disposables just in case you get diarrhea.

    I made sure to have a stock of OTC anti diarrhea and laxative meds and I think I was also advised to get heartburn meds by the chemo nurse. I don't think I used any of that but I didn't want to be scrambling for those things if I needed them.

    Lysol or similar (unscented is best) antiseptic wipes for the house to disinfect surfaces a bit more rigorously while you're immunosuppressed + nitrile gloves to wear while using them because otherwise it will burn the skin.

    Soft cotton beanie hat to wear at night &/or under toques - heads get cold!

    Make sure you have your favourite unscented face & body wash, cream, body lotion and lip balm. I ended up needing saline gel for my nose as otherwise I had cracking and nosebleeds but not everyone needs it. Skin tends to get fragile and very thin.

    Ask for a prescription for the "magic oral solution" at the first sign of any mouth or throat sores - again not everyone needs it but if you do, don't wait, ask for it right away.

    Softest bristle toothbrush you can find.

    hand sanitizer gel or wipes in strategic locations to promote hand hygiene

    Netflix or hulu or amazon prime and a list of tv shows which hit the right balance between keeping your attention but not requiring much thinking - for the days when you're pooped and just want to relax. Sometimes I was too tired to even think what I wanted to watch - it was good that I had a playlist set up and I just turned it on. There is free wifi at the BCCA and I watched netflix on my ipad while getting my chemo infusions.

    flu shot! for yourself & everyone around you

    transportation arranged to & from (unless you're having the kind of chemo which doesn't end up making you too shaky to drive yourself)

    Nice to have: cleaning service (or a super helpful family!) to keep kitchen and bathrooms spotless and disinfected; someone to wash the bedding every week & put it back on the bed.

    I was all about keeping everything super clean and soft - like I was a very overgrown infant. SillyHeart

    Because I was so neutropenic at times, we had boxes of masks too. I wore them when I went out. At home anyone in my family who got a minor cold wore them when close to me. One of the largest immediate risks to all of us while undergoing chemo is opportunistic infections - colds, flus, viruses, stomach bugs - these can all become very serious so infection control is paramount. If your blood counts stay good it's less of a big deal but sometimes it's hard to know when blood counts are falling.

  • cathy67
    cathy67 Member Posts: 411
    edited October 2019

    Thanks moth!

    I did a flu shot yesterday, this is my second time in my life. My daughter always get cold in school, but it is impossible to let her also get shot, they just don't want to do.

    I am hiring someone to do cleaning after my surgery, my husband and my daughter always made home dirty. Someone also told me to stay away from public place during chemo, but I want to back to my fitness club, I renewed the annual membership the same month I got highly suspicion report.

    I will go through this list again, so good, will start do shopping once I decide to go.

    Moth, who will prescribe me all medication? Medical Oncologist? If so, I shall prepare a list next time I see him.

  • cathy67
    cathy67 Member Posts: 411
    edited October 2019

    Moth,

    Any benefits for patients in chemo? Yesterday, I got my free flu shot.

    I only have BC MSP, no any employer insurance. Anything I may need but not covered in MSP? For example, is port covered? Please advise.

    Thank you!

  • GG27
    GG27 Member Posts: 1,308
    edited October 2019

    Cathy,

    Your port surgery would be covered by BC medical, just ask one of your Dr's. I did not have my port for chemo but got it when I became stage 4 because of monthly infusions. I love my bard power port. I make them use it for everything.

    If you don't have extended medical you should sign up for Fair Pharmacare. I had a lot of my prescriptions mainly covered.

    I suspect that I was quite different from others but I found chemo to be not too bad at all. I painted the entire exterior of our 2 storey house, built a rock wall and a garden. I would crash for about an hour nap every afternoon but found the steriods gave me increased energy. I did take lots of cleaning precautions at first but found that as time went on I needed to get out of the house & feel somewhat "normal"

    I got 2 really nice free wigs from Canadian cancer society. They have a professional hairdresser who restores the wigs & helps you pick out ones that look best on you. Most of them have been donated by other cancer patients. Call your closest society office. I only wore them when I went out, I live in a very small place & didn't want to be known as the cancer patient.

    good luck, you've got this, sounds like you've got lots of help here.

    cheers, dee

  • cathy67
    cathy67 Member Posts: 411
    edited October 2019

    Hi GG27,

    Thanks! Yes, I did call to make sure I was already in Fair Pharmacare, first thing to do after got biopsy report. I am not sure how they calculate,. I found they already give me discounts for my blood pressure medication, but so far no costly prescribed medication for the family

    I will ask for the wigs, however, I stay in a city, and always meet someone you know. I just don't want to repeat my story again and again. Some are very kind to offer help, some are keeping asking your feeling, are you scared?

    The other thing is that, how to get counselling support? I heard there is free service. After getting my post op report, I am really depressed, because I am always on six months followup, and I strictly follow it, then the end of day turns out node positive! How could that happen? I kept telling people around to got for screening, telling them I am an early caught, then reality is so brutal, and winter is the worst season, I need counselling support. I have been serving community as volunteers for many years, it is my turn to be served.

  • Pots
    Pots Member Posts: 189
    edited October 2019

    For counselling try BCCA Psychosocial folks as a start. They are a team of social workers that can refer you to psychologists and also will see your partner. Also maybe ask your GP for a prescription for anxiety/sleep meds.

    The oncology team will give you the prescriptions related to your treatments but you have to ask things like the mouthwash or ointments for rashes that are related to your symptoms.

    One of the things I found helpful was getting a plan in place for meals. Often I felt ok to cook and even felt a sense of accomplishment for making a good meal to feed my family but for the days when you can’t, have a plan. Some friends brought suppers, we went to Costco and a local catering company for good quality premade dinners. There was no guessing as to what was for dinner. Also have a stash of soups, crackers, smoothie fixings on hand for you when nothing tastes good but you need to eat.

    I think the standard for early stage chemo is a PICC line unless you have bad veins or are getting something weekly. I had one then for about 18 weeks which made showering a challenge but not impossible.

    Keep exercising just wipe down the equipment before you start!

    I bought a wig thinking I wanted to look “normal” during treatment. I only wore it a few times because it was uncomfortable and hot. I didn’t like how I looked in it, it felt fake. And then I stopped wearing it, graduated to soft hats and I guess I came to terms with trying to hide that I was getting chemo. Some of my cancer buddies back then (2013) refused to wear wigs at all, two wore nothing but wigs the whole time ...it’s really up to you to see how you feel.

    Be well,


  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited October 2019

    I loved scarves. This time I can’t because no matter how hard I try I cannot manage with only one working hand. I do have several hats and now it is colder I sometimes wear toques.

    BTW, my chemo went fine today and so far I feel OK. Tomorrow I have to fast for 6 hours prior to the PET other than water.

    Maria

  • cathy67
    cathy67 Member Posts: 411
    edited October 2019

    Marianelizabeth,

    Good to hear you went through with chemo today, and best wishes for your test tomorrow.

    I am waiting hospital's call for CT-Scan that my MO ordered last week.

  • cathy67
    cathy67 Member Posts: 411
    edited October 2019

    Pots,

    Thanks for the good suggestion, I will write down, as people here said.

  • cathy67
    cathy67 Member Posts: 411
    edited October 2019

    Hi Vancouver ladies,

    I just got appointment date with radiologist, it will be before my next meet with MO. But radiology must follow chemo, how to handle this? Nowadays it is so hard to see doctors.

    By the way, anybody can tell me any place I can find icy cap that they mentioned for hair loss due to chemo, I guess only on website, right?

  • cathy67
    cathy67 Member Posts: 411
    edited October 2019

    Hi Marianelizabeth,

    Where you bought that wig? I noticed you are in Victoria, but I am in Richmond. I have almost exactly same hair style after 20s, so it is worth to prepare the one that I can use for long.

    Thanks.

  • moth
    moth Member Posts: 3,293
    edited October 2019

    Marian - glad your chemo went well, hope PET scan fasting is over & done with now too.

    Cathy - pretty sure the BCCA still doesn't allow cooling caps in the chemo rooms. Someone from this board tried to get permission in 2018 and was refused and I remember seeing a letter saying it was a province wide policy? No problem seeing the RO - they just want to meet and tell you what they're planning for your once you finish chemo. Once everything starts rolling the cancer agency will make sure all your appointments are done correctly - I found I really didn't need to organize things as they did handle all that very well.

    By the way, each cancer agency office has a patient records office and you can go there and ask to get all your records. They will print it all out and then every few weeks you can pop in and just get anything new. They keep track of what you have and what's new. It will be typed up reports of recommendations from all the doctors and summaries of all the appointments, surgical report, pathology report etc.

  • cathy67
    cathy67 Member Posts: 411
    edited October 2019

    Hi moth,

    Thanks for so so valuable info! Next step is to find a wig, I want to have it not for chemo but for my future life.

    Anybody knows wig store in Vancouver area, let me know, I plan to use this treatment break for shopping, spending time with my 14 years girl, and back to fitness zumba class.

  • cathy67
    cathy67 Member Posts: 411
    edited October 2019

    Hi Vancouver ladies,

    I forgot if I has asked here or not. How about port? Mine will be 8 rounds 2 weeks ACT, will I need it? Or it is an option? Don't know our province's regular practice.

  • moth
    moth Member Posts: 3,293
    edited October 2019

    I think your doctors will make the port or no port decision based on your health and veins etc. I didn't have a port & it never even came up in our discussions while prepping for chemo. Do you already have your chemo dates? Have you had your "chemo teach" session (it's like a group session run by an RN explaining the whole process and people can ask questions. Family members were encouraged to attend ours as well)

  • cathy67
    cathy67 Member Posts: 411
    edited October 2019

    Hi moth,

    Thanks. Still waiting for the oncotype score.

    Guess then will come this chemo teach session, so sorry to hear it is a group session, too many cancer patients!

    Will ask MO whether port or not.

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited October 2019

    My understanding is if you have poor veins that are difficult to access then a Port or Picc line may be advised. It will be covered if recommended. I had my first port put in at VGH Vancouver by an anesthetist and my second one here in Victoria by a radiologist. The Picc line is a bit more hassle for showers and location.

    Ann I appreciate all your cooking/meal Tips. Even now I struggle and eating has been hard to do since my hospice/hospitalization.

    So for the good news~~I got my PET/CT results yesterday and "there is not a lot of activity." I don't have the report in hand but it sounds good. The plan is to continue chemo (Gemcitabine) until the end of December, do a scan in January and start Tamoxifen. There was nothing to tell us why the pain ramped up so it is anybody's guess, possibly radiation scar tissue messing with the nerves. So I have little pain with my pain pump embedded and the idea of "just tamoxifen" sounds appealing. I do not mean to diminish tamoxifen for those who take it premenstrually but to off chemo for anytime at all makes me happy.

    Marian


  • cathy67
    cathy67 Member Posts: 411
    edited October 2019

    Marian,

    Thanks for the reply!

  • cathy67
    cathy67 Member Posts: 411
    edited October 2019

    Vancouver ladies,

    Sorry another question, how to get Counselling support for patients? Preferable a phone number so I know they got my request.

    Even without this, I am already kinda of depressed every year when this season comes, but I've never tried medication. These few days, I always feel life is so meaningless for me, I know my friends are forever there to help, but just cannot help thinking .. ...

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