Hi looking to connect with more people on 4Ec and 4 pac i started in march 2026

[poppy261]

So sorry to hear this @cazgib10 . I can understand why you are concerned. Sending you a huge hug.

Hope they get to the bottom of it. At least the Oncologist is on the ball with it.

Ive heard mixed experiences with Pac. Some have found it to be much easier than EC, some have had very bad reactions.

On the Side Effects Listed, I think all chemo have mild to severe reactions. Some rare reactions.

Sadly we are all different. E.g. I knew a lady who was fine with chemo for 7/8 cycles, with minimal side effects eg the usual hair loss/nausea, but generally she felt able to live normally. Then the last one totally floored her/lost her confidence initially. When I saw her she had come through the worst and was fine again.

So we always need to be aware our bodies can react at any time. Luckily the lady was fine, but she had to spend time in hospital. But the hospital got on top of it and she was able to get back to normal life.

I guess thats why they have the 24/7 helpline. Because we can get sudden kick backs. Thats why they tell us to ring them even for minor changes/symptoms… they know this happens.

My plan is, if I ever get a severe kick back, I ring 24/7, and get to hospital asap.

But hold on to the fact that you recovered and your Team are with you.

I saw two women this week cold capping. One had lost 90% of hair the other had saved 80% of hair. . The lady with 80% clearly thought it was because she had fine hair. But the lady with 90% loss also had fine hair .

What I also do, is keep a food diary/daily diary just incase certain foods/drinks/activities create a reaction. It gives me something to cross reference with. But food/drinks/activities may be totally unrelated.

We can only do so much. After that Oncology have to do their bit. We have to have faith in them.

I was seriously woozy coming out from my first treatment. I needed my friend with me. This week, nothing. My friend collected me and I felt confused. . But when I got home, 2hrs later I started to feel seriously tired. I went to bed at 8pm and was totally out for hours. Still no woozy feeling though.

Hold on to the fact you recovered​.

If you need to talk it through more, ring BCNow Helpline and MacMillan Helpline. They are great as sounding boards, and helping you navigate this difficult road. You have time to chat. Which is what we need…time.

The other one is BCNow Someone Like Me….there may be a Volunteer who had similar experiences. Ive used them 3 times and the Volunteers have been really good for real life experiences.

Grab all the help available to you. You need it.

Stay strong. You are a really strong lady, even if you think you are not some days.

Sending you a mountain of virtual love hugs flowers and strength.

[cazgib10]

@poppy261 Thankyou im struggling nearing the end of chemo because i managed so well with EC , the injections on pac just floor me , other than the rash i have been mainly ok, i am concerned about going back in that chair and getting side effects im not used to or have encoutered before because i have a young son and he is praying for me to be ok . I do speak to bc now and they are good xx

[poppy261]

Your fears @cazgib10 are totally justified. We would all struggle with that. Its completely understandable.

Our bodies kick back sometimes. Its frightening. Chemo is cumulative. But what you need to hold on to is that … you came through it.

The lady I met who’s last session floored her, had young children. That makes it more tough as not only are you worried about yourself, you worry about the impact it has on your family. Logistically and emotionally.

Mums always protect their children. Always worry for them. Thats being a great mum.

So your worries are greater. More intense. More exhausting. But the way I always deal with worries is to list them. I decide which worries are mine; which are ones I cant deal with right now; which ones are someone elses; which ones are tiny…etc. I sift them out.

I do deep breathing exercises to clear my mind. Calm me.

Otherwise we feel we will implode. Be too overwhelmed.

There is a lovely Children’s Book called The Huge Bag of Worries. It comes, nowadays with extra resources and activities I think.

But I used it with my (now grown up) children.

It goes through a child struggling with a huge bag full of worries that wouldnt go away.

In the end the child found out what to do by sifting them out. Its such a lovely book.

There are numerous books that explain cancer to children… children learn loads from stories, and makes explaining cancer and treatment to them, easier.

I also heard MacMillan do Family Support. Check them out in your area if they offer that Service in your area. It can be a huge help knowing your children are being supported. Maggies also offer a wide variety of things. I dont have one near me, but we have another Cancer Charity where I get Counselling for Cancer. They offer all sorts of Support…art, crafts, drop ins, massage, counselling..etc. So ask your hospital about local cancer charities.

If your child is in school, ask the school if they can access extra counselling for children. Some schools buy in to Specialist Support Services.. Or ask your friends/family to help you find things out (do the leg work) if you are feeling too exhausted. Mac Millan Volunteers can also do the leg work sometimes.

Cancer is huge. It turns our lives upside down, inside out. Its garbage. The treatment is grim. But seriously important. But there are so many ways Oncology Teams can help us.

I was so pumped on anti sickness I was fine eating last time, and this time, so far. There are so many things they can do. Im waiting for bone pain with the injection . Last time I got nothing. This time I could be in for a shock. .

But tap in to a variety of things. I like a mixture of Support. It works better for me.. as some days I need to talk to someone … now… not at 10am on a Monday….

10 am on a Monday is fantastic, but life doesnt work to a schedule…things happen.

The more you tap into, the stronger you will feel to bash this cancer where it needs to be bashed…. because you will have support.

But, you cane through the reaction. You are strong.

[cazgib10]

@poppy261 Thankyou for ur advice and ur kind words I realy do appreciate them sadly the support isnt availble from mcmillan or maggies as i live in area where these things are not availble.

[poppy261]

Thats frustrating for you.

However, MacMillan do still provide a really good Nationwide Helpline with trained Nurses… So if they are not local you can still ring them. They will also keep your details if you are willing to do that, so they can give you better support, as they can access your details each time you ring, rather than you repeating all the time.

They also provide Trained Volunteers who will ring you and chat to you about anything. Give you support. You get 8 x 1hr phone calls, so you can pace these over numerous weeks. That is invaluable. They may also do some leg work, check resources, find other organisations.

So dont think, if they are not local, you can’t access them, you can. Most things nowadays are virtual. So more accessible in a way. But face to face is good if available.

MacMillan will send resources/information books on lots of subjects, through the post free of charge. We have mountains of MacMillan free books in my Hospital. They are open Nationwide, I think, 9am to early evening..6/8pm. Ive needed to speak to them for 30-40mins at a time. Same with BCN.

But ask school/Nursery re local support for your son. If you are more Rural, schools may be able to get Outside Services. They may know about local support networks/signposting organisation. There are more School Counsellors around these days. So worth asking.

There are lots of Charities like Barnardos, and Local Education Authorities may have lists of other Organisation,/ charities.

Sadly Charities can get hidden. But they are out there.

Maybe your local Library can access more Organisation. Mine if fairly pro active.

I found if you don’t ask, noone will tell you. Which is seriously tough when you feel your absolute worst I know. But Ive found charities and organisation I never knew existed.

I got these from this Forum:

If you lost hair ….. Cancer Hair Care.

Had a Mastectomy… Knitted Knockers..

BCN Forum here 24/7. We often are night wakers So find it lovely chat anytime.

Ive just had my second EC chemo. Still feeling Ok But I will never lose my vigilance. But I will enjoy the good moments when they happen.

Do something nice with your son. Treat yourselves if you feel up to it. Or buy a new toy for him so you can play at home.

Play dough, paint, are my go too. Kids love them.

Pamper yourself. Thats a priority. Even for 30mins….thats a priority.

[m1sty.george]

Totally second what @poppy261 has said. Rest and recharge! When we’re physically low it leads to low mood and that’s exactly the time to prioritise rest and self care. Xx

[m1sty.george]

Fantastic advice @poppy261 and I do hope your cold clears and next infusion goes ahead.

The EC hair loss… mine shed loads after my second one, but then it stabilised after that, and with gentle combing and washing only twice a week, it’s hanging in there. It’s easy to feel shock and panic when loads comes out, but it does slow eventually. I’ve kept probably less than half of mine with the cold cap, but it’s enough to have a covering. Most of mine has gone from the crown, so even though it looks patchy there, from the front it looks normal-ish! Party at the front, hangover at the back!

Sending you strength and hugs for the next round! Xx

[poppy261]

Thanks @m1sty.george .

Most of my hair has come out now, but I haven’t cold capped. I couldn’t stay any longer in the Hospital chair.

Strength to all you ladies that are there for longer sessions

Ive seen 2ladies this week cold capping. 1x80%success, and 1x90% hair loss.

So it seems worth the risk for those who can manage it. One lady was covered in a snuggly blanket. Big smile on her face. Then we realised we knew each other I had a mask on due to my cold . She had her big hat on. . .

How small the world is. Xxx sending positive vibes

[poppy261]

Ps @cazgib10 . If your son is a teenager, over 13, there are different Services open to them. More funding available. So do check with Education Authority, School and local charities. We have teenage charities in my area that do lots of arts, crafts, drama, woodwork, 3D printing, music, but sadly you have to hunt them out. They dont post through the letterbox. I heard about them when they tapped into community events/festivals.

I know young children love play dough etc but so do the Aardman Wallace and Grommet makers . Art in all its forms is a fantastic medium for any age. Even adults. Just “doing/making” helps everyone. Art, crafts, music, sport, cooking anything physical…And a great outlet for stress. . And relaxation. Xxx

I would still promote the Huge Bag of Worries as it shows how worries build up. Even for you just to read it. I dont think there isnt an older version as such, but if you do online shopping, they are selling cheap in second hand shops. But Blackwell still sell them new.

When I read it years ago, everything fit into place. It made total sense, even for me as a parent, and an easy read format with lovely pictures as well, that really got the message across . Ive still got my copy even now. . I will never get rid of it. Xxxx​

Enjoy the Bank Holiday. And hold on to the fact how strong you really are. You are being a mum, confidante, home builder and everything, whilst going through all of this. that IS strength.