Hello everyone, so glad to join your group with my first post. I live in Cairns and was diagnosed in Nov with ER+ PR+ HER2- and underwent lumpectomy for 4.5cm tumor and removed 7 lymph nodes. Outcome was 4 of 7 nodes were cancerous so my prayers to avoid Chemo went unanswered. I remain very grateful that I got away without having to have a full mastectomy. Further tests showed lesions in liver and lungs which have since been cleared as not cancer, what a huge relief. I had a port implanted which is very irritating and a constant reminder of the chemo to come. The waiting as you all know seems to be endless from the moment the GP says you have cancer to the day of your first Chemo. My first day is Tue 9th Jan and it feels like a dark cloud hanging over me, I almost cant wait to start so the anxiety of what is to come finally arrives. I've read that you all say it's different for everyone, so I guess I wont know how to cope until I'm in it. Any practical advise for my first date with chemo would help enormously. And, is it okay to be on your own at home after treatment? Also, how do you cope with what to expect following treatment? I don't want to sit around waiting for symptoms to emerge, what does everyone else do when they get home?

Hi thereSorry, but waiting is an unavoidable part of the treatment - it is not possible to predict how you will react (or if it is, I don't know anyone who knows how to!). For a first treatment, it is useful if you have someone (a family member or friend) to go with you and to help you home if you feel unwell. What happens during and after the first treatment will give you some idea of what to expect thereafter, although if you change therapies (I had 3 months of A/C, then 3 months of Taxol) your reactions may change .I don't know if you are living by yourself, or mean is it OK to be home alone for periods of time (ie if others are at work). Again, it depends how you feel. I had no nausea or fatigue, some have nausea but are not frequently sick and have a degree of tiredness, some are badly affected by both. There does tend to be a cycle - you will get to know what that is, and then can plan better as you will know what days you feel better and what days you don't. Take something to do during chemo - whatever you enjoy - reading, crosswords, but something to occupy your mind - it can be tedious, and it doesn't help to sit fretting about what's happening. Most day oncology units will offer you something to eat or drink, but you may want to take something with you - It's another way to fill in time. If your chemo is likely to make you lose your hair, this may occur in about 14 days after you start. Scalp tingling and slight discomfort beforehand is normal. My day oncology had a small range of scarves and hats available (although I chose to wear a wig). It's almost impossible to shake off that dark cloud at this stage, but remember that every chemo treatment is one nearer the end of your chemo treatment, count them down! Best wishes.

Hi there,I’m 3/4 of the way through chemo - completed AC and finishing of taxol now.i understand your anxiety of just wanting to start. Wanting to know what it’s like. Getting on with it is empowering. Feels like control. I get you. I felt the same. When it did start I was ok. Anxious and teary but ok. No nausea. Bit tired but I was still recovering from bilateral mastectomies (one elective/I’m 41)All things considering I felt good. Head hair fell out about day 17 along with all other hair about day 14. I fell into the cycle of treatment. Feeling bit crappy for a week then 2 good weeks. It really was not too bad. I had no expectations so was never disappointed or surprised. Talk to the nurses. Tell them your worries: they will make referrals if necessary. Be frank and honest. Trust your team.Maintain gentle exercise. It helps with fatigue. I swear it. Referral to exercise physiologist will help.Try some mindfulness practices. I was pretty anti that stuff but it has helped my type a personality settle down a bit. Try to sleep well. Get help with that if necessary. Ride the wave. Don’t fight it. Best wishes.xx

Wow @Sunshine0206 you look great bald I looked like a big potato head lol! photos haven’t loaded chronologically so the first one is when I cut it short Before I stsrted chemo the second one was just after my mastectomy and prior to treatment the third one obviously shaved it when I stsrted to lose it the fourth one is me now and the last one is 3 months after chemo finished. Margie xx

Terrific advice, thank you everyone, I wanted to reply to each conversation separately, but can't work out how to do it.!! I don't have children, I only got married in March (2nd time) seems unfair to have to deal with this so soon after our wedding. I lost my first husband to mesothelioma in 2008 we were together 31 years, I cared for him for a year before he lost the fight, I never would have thought it would happen to me. I'm going to keep reading posts here and asking questions as a way to get through this. Thanks again xoxox

You look damn great @Sunshine0206, I found the loss of hair liberating at the time and yep one less thing to worry about in the morning. While having a shower one day, no hair washing, no leg or pits to shave and then no make as eyebrows and eyelashes gone - it dawned on me ....this is what it's like for blokes!!!! No wonder they can get ready so quick!!!!@Braveheart60, I too had long blonde locks - very smart to go shorter. Good for you! You may find your taste buds are not effected til down the track a bit. Definitely prepare and freeze meals. If you think of your diet a it like a pregnancy diet, no soft cheese no salad bars etc and buy a baby toothbrush to be gentle on your gums. You will mouthwash after each meal - I didn't like the salt mouth wash so used Biotene no alcohol mouthwash which was good. I too too had both breasts off - as I didn't want to be doing this again. Depending on your pathology is if you still need radiation even if you've had mastectomies. I chose bilateral masts as I didn't want to do the rads. All the the very best. Xxoo

Dread of Chemo | BCNA Online Network

56 Replies

kmakm
Member
8 years ago
@CherylMcI How are you doing?
Jual
Member
8 years ago
Hopefully you will have a better experience for the next one, the vomiting must have been awful so sounds as though your onc is across that. Doesn’t hurt to ask some questions to the onc about things that might help next time such as whether a higher dose of steroids is needed or starting an antihistamine at the same time. Best wishes. Jual.
Mollygirl
Member
8 years ago
@Braveheart60, I got really knocked by the first cycle I think it shocked my body. But subsequently coped better the next round. You must feel so scared of moving forward. But it sounds like your onc is all over it - I so, so hope next round is not so awful for you. Biggest hugs xx
jennyss
Member
8 years ago
Dear @Braveheart60 - 'Bummer' as we used to say back in the 60's; and backing up @Sister 's best wishes for your next cycle
Sister
Member
8 years ago
@Braveheart60 I hope you cope better with the next cycle.
primek
Member
8 years ago
OMG you poor thing. Hopefully this round will be much better plus you'll have the injection to boost white cells. I needed Dexamethasone for 4 days, stemitil 8 hourly and ondasetron wafers half hour before meals. I could eat and the head spins and nausea was settled enough to tolerate. I spent every cycle of AC from day 3 in my lounge chair for at least 3 days. At least week 2 was better and great week 3. Yes...I get the I'm going to die feeling...I had it the 1st round. I truly hope round 2 is better for you. X

I literally lived on toasted cheese and dpicy chutney sandwiches. ..plus bubbly water. It's about all I could face. I managed to gain weight of course even on that.
Braveheart60
Member
8 years ago
Thanks everyone for your support and advice, I haven'[t been on the forum as following my Chemo on 9 Jan I had a very rough ride. 3 Hours after getting home I started vomiting and didn't stop till I was taken to hospital where I stayed for 4 days. Dr said I was super sensitive to Chemo and it took them a while to balance out the meds so I could start to recover. During this time I really thought I wouldn't be able to continue with treatment, it felt like the drugs were slowly killing me. I couldn't speak, eat, relax or sleep. I went home on the Saturday morn barely able to sip flat lemonade and swallow mashed up banana. Next morning I woke with a debilitating headache and what felt like a golf ball in my throat and temp of 38.3 so off again to hosp. Stayed the day in emergency and they found a chest infection and thrush in my throat. Pain killers and big doses of antibiotics and some disgusting liquid for my mouth and off home again. By this stage Day 6, I was only able to live in the moment and felt like my life had been taken away from me never to be got back. I guess depression had set in and the feeling of hopelessness got the better of me. Each day since then has improved and today Day 14 I feel like my old self again. So, now I understand that the cycle is, week 1 (forget it, just get through it) week 2 and onward just gets better. Due to my severe reaction, Dr is going to reduce the chemo by 25% and up the anti-nausea meds. He says I won't be as bad again. With this hope, I'm preparing my body and mind for Round 2 on 30 Jan. Meanwhile, I am eating healthy, little and often and walking 30mins a day as of today. Mentally, I know that if I feel really bad again, I can believe that it wont last forever and I will get back to normal. Good news that I still have hair!!! for how long though???
CherylMcI
Member
8 years ago
Onemargie I was so grateful to read your post on your experience. I too have been diagnosed with triple negative bc having just opted for mastectomy rather than two lumpectomies. I had an immediate reconstruction with an implant and my recovery has been startling (to me) easy. However the pathology result and the awful scenario painted by my surgeon has frightened the living daylights out of me. He’s talking BRCA testing, axillary lymph clearance, removal of other breast plust the implant just done and redoing with tissue reconstruction, plus chemotherapy and radiotherapy (the radiotherapy would compromise the implant apparently). It has knocked me sideways and I’m really not sure how over-reacting HE is being and how much I should challenge wha I am prepared to have done. I had a mother and sister who had bc but my sister had a different type and after lumpectomy and radiotherapy she’s been fine for over 10 years. It’s a very confusing and stressful time and currently I’m waiting for the Dr to come back to me with his recommendation post multi-disciplinary team discussion.
Spiv1803
Member
8 years ago
@Braveheart60 we start taxol on the same day. Good luck to both of us :)
Chea
Member
8 years ago
Hi Braveheart 60. I hope all went well for you today. I do hope you have someone to go home to. I also live in Cairns and I am free to talk to on the phone if you wish. MY cancer is similar and hormonal. Have not had chemo as I am on chemo meds. Let me know and Take Care. T