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Unicornkisses's avatar
Unicornkisses
Member
9 years ago

Whew, tests and Chemo starts. I need a secretary.

I had a nice relaxing time on the cruise. Mostly succeeded in forgetting about cancer,
I find shower time the worst. A big mirror in the bathroom brings the whole thing crashing back. Carefully washing around the wounds and then the ritual of oils, Betadine for irritated spots and bra back on with pads over the nipple areas. And massaging oils carefully into sore areas. This is the time I start to think about everything.
Anyway, Monday I saw the Oncologist. He was great, spent 1 1/2 hours explaining everything to my husband and I in quite a lot of detail. Said I had a choice of Chemo, which spun me out as I really had no idea, but of course he went on to explain the cocktails and the risks and benefits and side effects of the three that were appropriate for me. In the end there was really only one that suited, especially as we have a family history of heart problems. Mine is fine so far though.
so FEC3 + D3 at three weekly intervals with a gap in between. Should take approx 5 months to complete.

I have a portacath inserted next Tues 28th under general. It wasn't offered, it was stated that I was having it as he won't put Chemo in the small veins more than once. Funny how Oncologists differ, isn't it.
so I saw the Vascular surgeon yesterday morning to arrange that.

Had an Echocardiogram on Tuesday, rather weird listening to them recording your heartbeats, they are very squelchy.

saw the GP yesterday too for a Pap smear, she insisted as it was due. Also went through some dos and don't related to Chemo. I use a lot of Ibuprofen for migraine, which now I can't use, so it is onto the Panadeine Forte (constipation and put me to sleep) and Releiver tablets (which knock me around a bit so I usually avoid them if possible). 
Another reason for me to stomp around angrily and kick things!!!!

after the GP, went I for a preChemo blood test.
I now have a file card at Douglas Hanley Moir!
What a pain though that they can't access the Portacath for the bloodtests, though and I still have to use a vein.

Today confirmed I start Chemo on Monday 6th March.
thank goodness I can now confirm my clients for this week and part of next. 
That has been a real pest as they are assuming I am not working and they are not turning up to appointments even though I have made them and said I will call if I have to change or cancel.
why can't they ring me if they are not sure, not just assume things, it is very frustrating as I have other people waiting to come in.
These are the issues of being self employed. I will now go and ring and confirm everyone!

I am taking the two weeks off after this first dose of Chemo and will see how I go.

Rang the Health fund to confirm the gap cover applied to the portacath procedure and anaethetist.

seriously, with the amount of paperwork, phone calls, bills and appointments I need a secretary.
Or perhaps to give up work, it would be easier in some ways but not in others.
I just hope I take the right paperwork to the right appointments.
Having gone off the HRT last December when I found the lump, my mind is a fog at the best of times.

Whew.

I know everyone is different but I would appreciate any comments on FEC +D treatment if you have them.
I have a 6 page list of side effects and ways to treat them from the Oncologist but first hand tips would be great.
I am compiling my Chemo box with Movicol, diarrhoea treatment, mouth stuff, eye drops etc.
What do I need to know?

yours exhaustedly, Jennie

12 Replies

  • Afraser's avatar
    Afraser
    Member
    9 years ago
    Absolutely true that steroids can have these effects too. But many women find that in addition to pre meds, extra steroids are provided specifically to deal with nausea and are optional. Steroids can also have side effects. As with so many things with cancer treatment, the best approach is individual, trust your oncologist. 
  • melclarity's avatar
    melclarity
    Member
    9 years ago
    Well I am hoping too that you will be fine! sending wonderful vibes! You are susceptible the following weeks after infusion. Yes I too focused on that too, as I watched it through the drip I kept thinking its making me better, step at a time!!! The Steroids are to  make chemotherapy more effective and to help reduce an allergic reaction to certain chemotherapy drugs. The only thing that helped me was Ativan and it helped me sleep too which was more effective to get me through that first week after infusion. xx
  • Afraser's avatar
    Afraser
    Member
    9 years ago
    They give you steroids as part of the anti nausea regime. V important for some, less so for others. As I didn't get nausea, I successfully begged off them on my second cocktail. Once you have a couple of sessions, you'll have a much better idea of how it affects you. Fingers crossed for an easy run!
  • Unicornkisses's avatar
    Unicornkisses
    Member
    9 years ago
    That is reassuring about the infection risk, I really should wear a mask when grooming all the time, so it is not too alien a concept. I might wear one when I go to the GP though, everyone is always coughing there. I will ask the Oncology nurses when the most susceptible period is, I am guessing the week after the Chemo infusion.
    The nurses sounded lovely on the phone when I rang today, and assured me they would guide me through. I am trying not to think about it too much it just makes me feel sick and shakey. I am just concentrating on getting my bag and paperwork ready.
    I will pick up some EMLA patches on Tuesday when the portacath goes in.

    I hope I am not like that, Mel, that must have made you dread the next dose.
    I am going to try imagining the Pacman scenario if I feel foul, and follow the medication instructions to the letter.
     I too am allergic to Maxalon, so hope they have something else.

    What do they give you steroids for with the Chemo?
    the Oncologist said I would get anti nausea and steroid infusions at the same time.

  • melclarity's avatar
    melclarity
    Member
    9 years ago
    HI Jennie!
    Glad you enjoyed the Cruise!!! You do sound very prepared which is great and half the battle. I didnt get the chance of a Portacath and my right arm is corded badly but honestly it doesnt bother me at all. I did 4 FEC 3 weeks apart and 8 Taxol. The FEC is the 'red devil' or one of and is the hard hitting one. My Oncology nurse told me how I reacted the first time will pretty much set the scene. I unfortunately was quite ill and so for the next 3 infusions I had to go to Hospital for a few days and then home. I couldnt work as planned as was too ill, however many ladies have managed fine to do so. All my plans went out the window and so I went with it...turned out to be the best thing for me, difficult as am a single parent but personally great. The time I could work I was with special needs children and my Oncologist said there was no problem about germs etc., as you have as much chance of getting something in a supermarket. So they said common sense stuff really and wash hands alot. I like the idea of the mask though too! 
  • Zoffiel's avatar
    Zoffiel
    Member
    9 years ago

    The only infections I have had are localized in unhealed surgical wounds from a couple of weeks before my chemo. Which was a known risk and thankfully have been managed with oral antibiotics. The high risk period for infections--unless you have an underlying condition--is quite well defined. Maybe you can modify your practice to avoid those times. Or just take a punt and hope for the best. 10 years ago I was working in a public library and had no problems at all.

    Good for you providing an education session for your GP. It's shameful that they are not aware of really well publicized services like the breast care nurses. Nice to know she will investigate ***rolls eyes***

  • Afraser's avatar
    Afraser
    Member
    9 years ago
    Hi
    I worked right through chemo and never picked up an infection from anyone else - human, animal, gardening or anything else. So wise to take precautions but all going well you may not be at a high risk. Best wishes.
  • Unicornkisses's avatar
    Unicornkisses
    Member
    9 years ago
    Thank you, ladies. Yes, I did get the My Journey Kit. I am making very good use of all the books and information.

    When I saw my GP yesterday it was the first time I had properly seen her since being told I had breast cancer in Christmas Eve. On that day we left the surgery with a referral (also faxed to the surgeon who was closed until 9th Jan ) and that was all.

    Yesterday I had a long appointment and boy, did I make the most of it.

    During the appointment I mentioned that she had given me nothing and that I was beside myself with worry until I found this site, and about the My Journey Kit and the Online Support Group and also about the Breast Care Nurse (who I also had to find myself)
    I told her that I could have saved a week of desperation at least if I had had the information.
    She did not know anything about these resources!

    I gave her details about all of them, and she said she would investigate, so I hope the next lot of ladies she sees gets more support.
    To her credit, she said she had never had anyone who was in my position before. Everyone else had been able to contact the surgeons straight away and get appointments.

    I will be mentioning this to my Breast Care nurse and the moderators on here as I find it amazing that the very large Medical practise has no handouts about these services.

    I don't know why the pathology place could not access the ports. I know it requires special needles. She just said they couldn't. 
    The hospital is about 1/2 hours drive from me but if I can have the tests on the day, before the Chemo, that would be okay. At least they can use the port for the CT scans and I am guessing for the anaesthetic for my mastectomy in 6 months time.

    My husband is really worried about me working during Chemo in case I pick up an infection from my clients.
    I am not sure what to do about that as I am self employed and 5 months is a long time to close down.
    I plan to wear a dental type mask and use the hand sanitiser, but I will handle their dogs that they have been kissing and coughing on, I talk fairly close to them, maybe two feet away.
     I am wondering how risky it will be.

  • mum2jj's avatar
    mum2jj
    Member
    9 years ago
    I was going to suggest what Zoffiel did.  I am actually a nurse, and  have previously worked in pathology.  These days a lot of the collectors in pathology are not nurses.  Having said that even the nurses are not trained in using portocaths.  However most of the oncology unit nurses are happy to collect your samples for you if you pop in there, so check if that is an option.  They may even be able to send them off to the lab.  Your oncologist is awesome in my opinion.  I have had BC twice and did not use a port the first time.  My veins are now trashed for life.  I can't use the veins in my other arm due to BC/lymph node removal.  SO now every blood test is a drama.  I had the port the second time and it was awesome.  It was a bit of an eyesore as it stuck out a bit but made chemo so easy. I found FEC pretty tough going with the nausea worse the first week. Ginger ale was another good friend of mine.   I used to take the week after chemo off but could work the other two weeks.  make hand sanitiser your new best friend.  Have it in your bag.  Wipe over everything form trolley handles at the shops and tables in cafe's with it.  I did this and managed to get by without picking anything up.  I also avoided cinema's etc at the times when my white cell counts were lowest.
    I know the secretary feeling, it's amazing all the paperwork and info.  The My journey diary is a huge help.  Did you get the BCNA My journey kit? It also has a nice wallet to put all your paperwork in.
    All the best.
    Paula xx
  • Zoffiel's avatar
    Zoffiel
    Member
    9 years ago
    Why can't they do bloods through the port? You may find that's just because no-one at that particular place is trained to use it. I go into the oncology unit either here or in the town where my oncologist is based and get the nurses there to do it. It doesn't matter where you get the tests done as long as all the relevant people are on the list to get the results.
     Ask again and find out why that decision has been made if you really would prefer them to leave your arms alone.
    My port is a bit dodgy and won't always draw, or will but very slowly. I have decided that my poor old arms are for emergencies only so it's the port or my feet/ankles (which is not nearly as unpleasant as people seem to think it is)