January 2019 chemo starters

I felt the same Trixie, you will find you feel more in control once things get started.

Needing some encouraging words tonight. My op was 7th November and I haven’t started chemo yet. Onc said as long as I start before 7th Feb I’ll be fine but I’m finding it very hard to believe. I just have this tiny bit of my wound that has a soluble stitch poking out now and won’t close up. Has anyone had this? @Dikat I’m struggling with seeing cancer everywhere- like today I threw away expensive make up and a Yankee candle:-( trixie- me too! Just want to know that any risk is getting dealt with. I haven’t started hormone stuff either so I’m very scared.

Thank you kip. Xxx

Hi Stuck at 14, I was feeling the same starting to get stressed about it because of what I’d read, I’d had mine on 13th November & 13 Dec and so I aaked the Oncologist the dreaded question about the 30 day & 60 days! his reply was a bit shady but said you have to heal and can’t start until your healed and for me he said should be three weeks from this week coz also needed scan date but he said he could not do my predict due to the PC, its awful having to wait but we have to put our trust in the doctors xx

Thankyou all for sharing your feelings and tips. I’m day 9 and have definitely turned the corner today. I think I was lucky and didn’t have much nausea - when I do I just take the ant sick pills. My worste fears were getting constipated - that has been awful - again that sorted itself today. My breast cancer oncology nurse is going to get something stronger for my next round. I’m sad that I can’t stand chocolate - i’m A real chocoholic. But that’s a small price to pay. I’ve found very salty foods appeal most. Ice lollies are very soothing to the yucky mouth and orange juice cuts through well. I get my wig tomorrow - I feel very upset about it but I take heart from all you ladies who have coped so well. It’s my birthday at the weekend and going by some of your reports it looks like my birthday present will be braving the shave. Good luck and hugs to all of us going through this ?

I know what the chemo nurses/doctors are saying about not worrying about diet, because we’re going through enough already & don’t need another stress - it can also be difficult with all the taste changes to find anything that appeals. However, I look at it slightly differently, in that my body is already being subjected to the most toxic regime imaginable, so I should try not to load it even more (esp the liver which has to metabolise AC) by eating crap. So simple foods, fruit, vegies, a bit of protein etc are going to be easier on my body than heavily, fried, oily, processed food. It’s an aim rather than a rule though - I’m certainly not perfect.

The latest for me is that I’m now in hospital with neutropenia!! I knew it was a risk with AC but somehow didn’t believe.it would happen to me. Started getting achy muscles etc then developed a slight temp (just over 38) so according to the rulebook had to come to Emergency. My neutrophils are 0.1, I’ve had IV antibiotics as a precaution (though I actually think I have a virus) & am waiting to be seen by the oncology team.

Hi B74, just wanted to give you a big virtual hug. Hope they sort you out very quickly and you are home before you know it G

B74 I hope you’re feeling better soon ?

LB, big hugs, hopefully you’ll be sorted soon xx

Hi Stuck at 14,
I know how you feel. My surgery was not until 20th November. The hospital really messed up because I was diagnosed on the 9th August!!. My tumour at surgery time had doubled in size from biopsy time!! I was told before surgery that I wouldn’t need chemo… Of course I did and I will never know to this day if this still would have been the case, if they had operated on me in a more timely manner. They did put me on tamoxifen which quelled my nerves at the time, but when I saw the oncologist post surgery she said tamoxifen takes three months to work and that letrazole would have been more effective !!!Could you ask to see if you can start a hormone therapy, if your tumour was hormone responsive?
I started chemo on the 28th December, 5 weeks after surgery, they were originally telling me I would not start chemo until mid January, but at my first meeting with my Onc I told her i would not be leaving the room until I got an earlier date and it worked!!! I told them I was really unhappy about the delay in surgery and how I was always palmed off. I was not going to tolerate a delay in chemo too. Luckily my wound had healed, I just had a dry scab on my tummy ((I had a diep) I will say howeve, that chemo has definitely slowed down further wound healing and probably reversed the healing process by about 3 weeks, in that the scab still is there and the wounds were a lovely pink but became a darker red again once chemo started, However, this has all been liveable, if slightly annoying.
I can really understand your upset and fear, because I have been there, especially if the NICE guide lines for chemo are 31 days. The good thing is your tumour has gone???It sounds like it’s just belt and braces now. If are feeling upeasy can you go back to your Onc and stamp your feet a bit for better explanations and either push for appropriate drugs or a quicker date? I know this is not easy at all. What would the implications of slower wound healing be against starting chemo more quickly? It’s important we get answers. We are fighting for our own health and well being it’s so important. I regrettably paid a price for a delay in surgery and I was not going to pay that price again re; chemo. I hope you get full answers with solid justifications for their decisions. Good luck. Sending you loads of strength and empowerment.
Sunny daze xx

Sending you lots of love , strength and healing B74. I hope you get home soon and back on track. Thinking of you
Sunny daze xx

Happy a Birthday for the weekend Tbird. I know it’s rotten isn’t it. My 50th will be two days before my 3rd chemo infusion. The joys??? I hope you are able to find a date to enjoy your celebration. I am in the process of losing my hair. I braved the shave at the weekend, a half way house. I couldn’t cope with a full Sinead O’Connor, but that won’t be long now I think. I get my second chemo this Friday, so I will have to wait a week or so until I feel a bit better before going the full monty and braving the shave. It is so dehumanising though. My friend (ex breast cancer) said this to me tonight, it’s only hair. “Hair today, gone tomorrow, back again another day?” We can do this. Xx

Hi B74… hope are you bearing up in Casa NHS.   I had exactly the same during my T chemo, a 2 night stay.  I had IV antibiotics and regularly blood tests throughout the day and by day 2 the neuts were 0.6 (still not great) but they said as there were no signs of an infection I could go home.   I actually think I was a more risk of an infection in the horrible little room I was put in than being at home!!   Hang in there… use the time to rest up and get waited on…

Kip

xx

@sunnydaze thank you! I’m starting tomorrow on ec. Scared but sooo relieved to be getting going! Xx

Stuck at 14 good luck for tomorrow ?

Thank you G, LB, Sunnydaze, Kip. I’m still in hospital, now on an oncology ward which is much better than Emergency! - I think I got about 1 hour sleep the first night with people coming & going all night long. It’s all incredibly frustrating to me because I’m sure my temp & achy muscles were from a virus (my daughter currently has a mild flu), so really didn’t want the antibiotics - but had to have them because my neutrophils were (are?) so low. But for the last 24 hours I’ve been feeling perfectly healthy & just want to get out of this germ bed and back home to my kids, walks & decent food! Just waiting for a blood test to show my WBCs are ok.

Stuck at 14 - good luck! It’s scary but I know what you mean about wanting to start - and every day of chemo is one day closer to the end.

Good luck stuck at 14 for tomorrow. I have my second Fec tomorrow and feeling a bit anxious now.
B74 hope you get home to your kids and your home comforts very soon. This is hard enough without a hospital stay.
Sunnydaze

Evening Ladies, I hope tomorrow goes well and you are looked after wonderfully and the whole process goes smoothly, will be thinking of you. B74, all crossed hoping you will be back home with your ickle ones soon! Xx

B74, Glad you’re feeling better xx Sunnydaze & Stuck at 14 hope all goes well tomorrow xx
Kip hope you’re doing OK xx
Dikat , like you I wounder what will happen to my hair, hope it doesn’t come back the colour it is now
Welsh j how’s things going with you xx
LB happy birthday for the weekend, what day actually is it on? Xx
G hope your doing OK, big positive hugs to you all

Thanks everyone,
I think I will need it today and appreciate your kind words. It’s a bit of a perfect storm day today. It’s my daughters 15th birthday and I’m putting on a brave face, whilst crying inside. My hair is just literally coming out in handfuls like cotton wool this morning, it’s much more distressing than I ever anticipated? I had it shaved last week, a kind of undercut with a lovely floppy fringe,but my husband is going to take me to the barbers this morning for a final shave before chemo. . I actually think it will be easier to deal with when I can wear my wig and feel half human again. In the meantime I am going to bake a quick Victoria sponge for my daughter. Oh this is a hellish journey, I’m glad for this forum, appreciate the sisterhood.We can do this because the alternative is pants!
Sunnydaze xx

Hey sunnydaze, you are obviously a wonderful mum ?, and everything else will just happen and you will make the best of it because of this, thinking of you today xxx