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July 2020 chemo monthly starters

KateH
Member

Re: July 2020 chemo monthly starters

Not at all, Tara, it’s useful to share thoughts about the schooling problem. I imagine it’s more challenging keeping primary age kids off school. I’m thinking we’ll keep going with home school initially but maybe keep some socially distanced walks going with friends. I should have had 2 or 3 sessions of chemo done before term starts, so hopefully I’ll be in a better position to decide then. Certainly adds another layer of complexity!

It sounds like you’re coping really well so far. I do hope that continues for you. Did you go for the cold cap?

Kate xx

Helen111
Member

Re: July 2020 chemo monthly starters

Hello all, it’s good to meet you all although obviously I wish none of us were here! I’m Helen, I’m 51, I was diagnosed in mid Feb with a 30mm ductal carcinoma, Grade 2, HER2 negative, ER positive. Due to Covid and waiting for scans, there was a delay in my surgery, but I eventually had a mastectomy in April. Unfortunately the lump turned out to be 100mm and 1 of my lymph nodes was positive, so I had to go back in for an axillary node clearance in May, in total 4 out of 17 nodes removed were positive. So I am starting chemo  on 30th June, 3 cycles of EC and then 3 cycles of T, 3 weeks apart, followed by radiotherapy. I had a PICC line put in on Friday which isn’t too bad although I am reacting slightly to the plastic dressing, very itchy, so will need to ask for a different dressing when I go in on Tuesday.

I have 3 children, my eldest son is 19 and home from uni in London, my daughter is 17 and doing A levels (from home obviously) and my youngest son is 7, he has complex learning disabilities and behavioural issues, he can’t go back to school as he wouldn’t cope with the restrictions and could put me at risk. It has been very hard having him off school all this time while trying to recover from my ops.

I decided not to use the cold cap so have ordered a couple of turban/hats in funky patterns made of bamboo fabric as apparently it’s very soft and cool to wear. My son is very excited about the prospect of shaving my hair off so I will be bald like Daddy!

Anyway, thanks for reading all this, I wish you all the very best on this journey. I have found this forum an invaluable support over the last few months and am sure this group will be too.

Helen xxx

ttyler
Community Champion

Re: July 2020 chemo monthly starters

Hi Kate,

 I did not realise that you too are a teacher so hope you were not offended by my activity suggestions. It has been more difficult to home school my two for the first couple days after chemo as I felt like I had been travelling in a car whilst reading a book for a month. A little travel sick I guess, however I was not actually sick. I told my team I wanted to be as well as I could as I have my boys to take care of and they gave me some really good anti sickness meds. I try to get them to do 2 pieces a day, where as before surgery and chemo they were completing all work set.

 The head teacher at school made a really good point the other day. He said if we take the time the children have had off so far and work out the time they have left in education it equates to 1 week a school year. When you look at it like that it’s not too bad. Additionally, when I was at school children from different cultures would take time off to travel to the country they were born  in the school year, they seemed to do alright and not fall too far behind. Just do what you can.

 I am already due for my second round on Thursday. The past 3 weeks have gone so quickly. Hopefully they will for you and your family too.

 Lots of love and all the best

 Tara

xxx

 

KateH
Member

Re: July 2020 chemo monthly starters

Thanks, Tara, that’s a useful perspective on schools. In a way we’re all kind of used to isolating and home schooling, so maybe another few months of that won’t matter that much. My son, who’s 16, has coped very well and is pretty motivated, but my 12 year old struggles. I’ve been helping her a lot (I’m a secondary school teacher, at a different school to hers) but fear I’ll not have the energy once treatment is in full swing. I think we may have to play it by ear.

All the best

Kate x

ttyler
Community Champion

Re: July 2020 chemo monthly starters

Hi Kate H

 I have jumped in again from the June 2020 group. I am 36 and have had triple negative breast cancer. Had the 19mm lump removed in April and started chemo 11th June. Have my second one on Thursday.

 I have two children a little younger than than your children,  I wanted to let you know about what was happening with schooling. I work at the school my boys go to albeit in a different year group. On the 10th July our school are allowing children that have not yet been back those In Y2/Y3 and Y4/Y5 to go back for 4 days to help with transition. This would be really ideal for my youngest as he has autism and struggles with transition and change. My oncologist has said he can potentially go back but would have to take all of his clothes off at the door when he gets home and shower whilst I wait in a separate room, however my boss the head teacher has said he will not allow him back as he can’t promise the boys won’t get Covid or any other big and bring it back to me. As I am a member of his staff he has to think of my safety, which apparently is ultimately more important than my Childrens education. I am not sure what will happen in September yet as I don’t finish chemo to the end I am having six rounds of FEC-T. He said he will have to review the situation then. 

 It must be hard living in a flat, but what I have been doing with my boys for a change of scenery is putting my mask on and one in the and just Taking them for a little walk around the block by my house. This seems to satisfy them. Maybe you could walk up and down the street a couple of times. It’s not a lot but does make a difference. Also don’t know if you are aware but most websites used in school have been free access to parents during lockdown. There is one call Twinkl where you can download activities and crafts for your children to complete. I am not trying to pry but know how hard it can be to keep children occupied whilst we are going through treatment. In a way we have been lucky because most children have been in the same position but now things are being relaxed I sometimes feel guilty that they can’t be the same as others. We will get there this is just a small part of our lives which they are having to be part of, but remember we are making them stronger so that if they ever have to deal with an illness when older or their partners they will know that it is possible to get through it.

 Hope you all have a nice day.

 Lots of love

 Tara x

KateH
Member

Re: July 2020 chemo monthly starters

Hi all,

I’m Kate, I’m 49, and I’m due to start chemotherapy in a couple of weeks time - 8 sessions over 16 weeks. Have had to cancel all 50th birthday celebrations this summer!

I was diagnosed in late April with ER+ PR+ HER- invasive ducal cancer, plus an area of DCIS. Biopsy & MRI suggested it was stage 1, grade 2. Initially they thought I would need a lumpectomy + radiotherapy, then they thought the size of the DCIS was such that I’d need a mastectomy & sentinel nodes removed. I had that 3 weeks ago and have been healing pretty well. I thought I was over the worst...

But, unfortunately, my pathology results came back last week saying the cancer was actually stage 2 (only just - the tumour was 2.1mm), grade 3 and the cancer was partially in one node. They don’t seem to want to take any more nodes as the other 3 were clear, but I now I need chemotherapy too. I feel very stunned and scared - about the new diagnosis and the treatment that I wasn’t expecting.

Both my surgeon and oncologist has said my cancer is curable. I’m trying to hold onto that word and to mentally underline it when all the other horrible words crowd in. I have a fantastic team at my hospital and I just have to place myself in their expert hands and believe what they say.

I have 2 kids, 16 and 12. The 16-year-old has been amazing - very kind, lots of hugs, optimistic about the future. My youngest is struggling anyway and I think doesn’t know what to make of all my treatment. We have been reading a lovely book together which I would highly recommend for kids aged 10-12, called The Best Medicine by Christine Hamill - a Northern Irish writer who went through breast cancer treatment. (She also wrote a non-fiction book called B is for Breast Cancer about her experience which is about the only thing I’ve managed to read that has cheered me up and not freaked me out.) The Best Medicine is funny and moving and we’ve had a good laugh and cry together about the awfulness that is breast cancer,

Today’s top worry (the list is very long and they vie for the number 1 position) is about the kids going back to school (where I live, term has finished) and bringing back Covid or some other bug. Getting an infection during chemo sounds scarily serious. I’m unclear what shielding really means. I can’t imagine being socially distant from my family within our small flat. But my youngest is going stir crazy and really needs to get back to school. And I’ve already been self-isolating for 5 weeks and am dreading not being able to go for even a socially distanced walk with a friend, for support, laughter and a shoulder to cry on.

My oncologist says I can try the cold cap and I will give it a go. Fingers crossed - I don’t fancy losing my hair. The thread on cold caps was useful to read and quite positive. One tip I read was to invest in a silk pillow case and good quality dry shampoo. 

I’m very glad to have found this space and feel immediately less terrified, knowing I’m not alone. Thank you all for sharing your stories. Wishing you all strength for the trial ahead. May there be good days ahead.

Kate xx

FindingDory
Member

Re: July 2020 chemo monthly starters

Hi Steph, thank you so much for your reply and i’m sorry that you’re going through this too. 

I’ve had my CT scan result back this week and its all clear, thank god! So I'm feeling much better about everything and more positive about getting through chemo and radio. Had an appointment to check my wound & take the dressing off with my bc nurse on Thursday and seems i’ve got my wires crossed a bit. They like to allow roughly 4 weeks between day of surgery and start of chemo, so i’ll be starting a bit later than i thought, more towards end of July i think, but i’m still waiting to meet my oncologist so i’ll know a lot more then.

Still waiting on pathology result to see if margins are clear this time, so i’m hoping to hear something soon. 

Hope you and everyone else is doing ok - you’re right, we can be a great support to one another and get through this! Thank you for the kind words, 

 

Becci xx

ttyler
Community Champion

Re: July 2020 chemo monthly starters

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 dolly with hair

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 without hair with hat 

ttyler
Community Champion

Re: July 2020 chemo monthly starters

Hi Claudia,

My name is Tara. I have just hopped in from the June 2020 chemo thread. I too have children around your children’s age. 9 and 7. I had grade 3 triple negative 19mm lump removed in April. I say had because my margins and nodes were clear so the chemo to me is just to ensure it never comes back. Shi is right you can get a book from you bcn called ‘Mummy’s lump’. It explains things really well. Also I don’t know if you will loose your hair with your chemo but I contacted cancer hair care and they sent me a lovely knitted dolly for my younger child. It turns inside out to show what you look like now with hair and then what you will look like with no hair. My youngest has Aspergers a type of autism. The dolly has really helped him sequence the process in his mind. He is also a hoarder if dolls. This is part of his obsession. Don’t know if you have boys or girls but this really helped me too. There is so much support out there just let me know if there is anything you are worried about and I will try to help you.

 I am due my second round of chemo next week. My first was not nice but doable. As I have children I told my Oncologist I want to be as well as possible. I have to say drink plenty and ask for and take all anti sick meds as you are told and I am sure you too will be fine.

 Good luck and lots of love 💕  Tara xxx

Shi
Community Champion
Community Champion

Re: July 2020 chemo monthly starters

Hi Claudia, I think there is a book if you want to tell your children with the help of that, I think others have used it. Not sure if your bcn has already told you about it? 💕💕Shi xx

Claudia3609
Member

Re: July 2020 chemo monthly starters

Hi I was diagnosed on 30thmay with invasive duct cancer which is roughly 39mm. Mri scan showed my lymph nodes to be fine and I will having chemo in July with a lumpectomy once chemo is completed. Back to front from everyone else but it's for the greater good. I'm a bit apprehensive about it all. I now have to tell my kids which I am dreading as they are 8 & 11

Mai7
Community Champion

Re: July 2020 chemo monthly starters

Hi all, I’ve just discovered this awesome app which is specifically to help with managing medication, monitoring side effects and how you’re feeling during treatment.  I put everything on a spreadsheet when I was going through treatment but this creates graphs for you and you can share how you’re doing with friends and family.  I would have loved it, it’s super geeky.  It’s on Apple only at present

http://www.careology.health/ 

Stephie82
Member

Re: July 2020 chemo monthly starters

Hi Becci

Sorry to hear everything you're going through.. it's so tough isn't it.  I know exactly how it feels to wait for results, that was the worst time for me.. I was in shock with the diagnosis and literally petrified with the scans but it does get much easier after you have your results and a treatment plan in place.  Now I have my plan in place I feel a much less stressed.  I've got my masectamy on the 3rd and then probably chemo and radiotherapy.  6 months in total of treatment which seems a long time doesn't it but I found out on 13th May and that was well over a month ago so time will go quickly.   Once you have all your results back and a plan in place you will feel better.  Just remember these days the science and treatment is amazing and we will get through this.  We can all support each other 🙂  Lots of people have said to me dont think about the whole big picture just literally take it each day as it's much more manageable. 

As for the cold cap I assumed it was an option but I've not asked my hospital. However I've decided not to bother with it as I dont want to be in hospital longer than I need to and also I've not had a hair cut since Feb(!) so it's not looking it's best in any event ha ha!  I think with hair loss it can make people look ill but I've told myself the hair loss is simply the chemo which is making me better.  If you see what I mean - its not the cancer making us lose our hair.  I think you're absolutely right there are some gorgeous head scarves etc out there so between that, wigs and summer hats we will be fine 🙂   Apparently hair grows back thicker and more healthy looking after chemo! No idea why that is but this time next year we'll have gorgeous hair! 

I understand how you feel about being alone in all this.  Friends and family can be supportive but they can't really understand how we feel so it's lovely that we can chat to each other.  

We'll come out the other side together 🙂  

Steph xx 

FindingDory
Member

Re: July 2020 chemo monthly starters

Hi Ladies, I'm Becci, 39 and was diagnosed on 12th May. Originally thought it was stage 1, grade 1 Er+PR+HER- until 1st surgery. On the 28th May I had a lumpectomy and sentinal node biopsy which was positive for cancer so I had an axillary node clearance at the same time. 4 of the 9 nodes removed came back positive, the tumour was larger (44mm) and more aggressive (grade 3) than previously thought and unfortunately the margins of the lumpectomy were not all clear. I went back in for more surgery last Thursday to take more breast tissue away, if margins arent clear this time it will be a mastectomy next. Have also had a CT scan today to check for spread & staging (I figured its now stage 3?) its another wait for more results and i’m so scared its going to be more bad news. Haven't got a start date yet for my chemo, was just told last week that it would be very soon and for 6 months, so I'm guessing it will be around the very beginning of July. I'm trying to be as positive about everything as i possibly can and strong for our 4 children but I'm dreading whats ahead and already feel like these last 6 weeks or so have been hell. I’ve already been told by my bn that the cold cap won’t be an option for me due to coronavirus but i’m ok with that i think. Obviously i won’t know how i’ll truly feel about losing my hair until it actually comes to it but I'm thinking that i’ll also get by with some nice head scarves being summer, guess it depends on our English weather though! Would be so nice to chat to others in a similar situation, at a time when you can feel so alone at times. 

Thanks for reading and i hope you’re doing ok as you possibly can be.

Big hugs, Becci xx

Shi
Community Champion
Community Champion

Re: July 2020 chemo monthly starters

Please remember if you are swapping personal emails do it over pm on here not on the thread, it is open to the world. Please keep safe 💕💕Shi xx

Flamingo86
Member

Re: July 2020 chemo monthly starters

Hi Steph 

Hope you had a lovely weekend in the sun. Sorry you are going through all this too, its so bloody tough. Keep the positive thoughts up and try not to think about it coming back. It hard I know but all your energy needs to go into beating this. Mines come back a little different to last time, so I hopefully this is the last time I have this battle. There has been some new genetic findings since last time I had it, so gonna see if that brings anything back. It been sore, and I've had abit of cording but im doing really well. It will be 4 weeks tomo since my op and can do most things now, walking loads again now to, managed 5 and half miles this weekend proper tried after tho lol. Make sure you keep going with the exerciser this do make a difference even if they hurt abit sometimes.

Im not going for the cold cap its just not for me, I don't want to be there any longer than I have to be. Everyone its different tho, and if they feel its right for them I totally get it. My friends are all on the look out for funky head bands for me so see how I feel. 

It will be great to stay in touch,  I can hold your hand from afar, I found it hard going to everything alone and having most things over the phone as I never take everything in and its just always good to have someone there, but it is getting easier I think. Chemo nurses seem nice and its been moved out the main hospital so feels as safe as it can be. How are you feeling about you op? Anything you're  worried about? I had the drain this time which was odd but no where near as bad as I thought it would be. 

Happy to swap e-mail address if we are allowed? I didn't do this last time so all new to me, it's been a really nice to get your message back tho. 

Big hugs hun

Charlotte xx

Stephie82
Member

Re: July 2020 chemo monthly starters

Hi Flamingo 

It's so nice to hear from you.  I'm so sorry to hear you've got to go through all this and for a second time.  I often feel really positive and that I can get through all this but I really worry I'll get through it and it comes back.. it's so unfair.  I don't understand how it all works and why it comes back but it really worries me.  I really hope this is the last time for you, now they've taken out all the lymph nodes hopefully it can't come back again?  I'm having all mine removed too as well as a full masectamy so I hope it doesn't come back.    Did you recover okay from having all your lymphs out?  

I know what you mean about talking to people going through a similar thing.   It's great you have lots of support and my partner and friends are great too but it's just not the same.  Also, you're so young too.  It would be lovely to stay in touch and support each other 🙂  As for hair loss and chemo that's so true about it being summer.  I guess in winter it's a little easier with having hats on etc.  I had looked into head scarfs and some are really pretty and hopefully very light material so I think that's what I'll go for.  There's some lovely ones online.  Are you going to try using a cold cap to keep your hair or are you trying it?  I don't think I'm going to although I know some people do and it works for them.  

Steph x 

Flamingo86
Member

Re: July 2020 chemo monthly starters

Hi Stephie82, 

I was diagnosed just after Easter with breast cancer for the 2nd time. I'm Charlotte and I'm 33. Last time 5 years ago, I had a lump removal and one lymph node out, followed by chemo and radio. This time it came back in two lymph nodes but they took 15. I'm starting chemo on the 1st July then radio after. Im not an expert and have had different procedures to you but happy to chat and help in anyway I can. Well done for keeping positive, it's really hard but it helps and got me through it before. I have the most amazing support around me. Im very lucky, but it be lovely to have someone to chat to that understands.

 

I having the hair loss dilemma at the mo.

I hated my wig last time so stuck to wooly hats as it was winter. Ive been doing loads of online searching for picture and advice on just wearing headband and stuff but there doesn't seem to be much unless I want to cover my whole head. I get people like to cover their heads but feel like it's gonna be really hot in the summer. I have ordered head bands and a straw hat, but wonder if anyone has come up with anything else? 

Stephie82
Member

Re: July 2020 chemo monthly starters

Thanks Mai for setting up July's chemo board.  I'm Steph (38) and was diagnosed on 13th May with lobular BC.  I'm having a masectamy and lymph removals in 2 weeks time and then chemo in July followed by radiotherapy.   Hoping to find support here and to support others who are starting chemo in July!  I'm trying to be really positive as breast cancer is usually treatable these days but it's an anxious and stressful time (got a house move on the go as well!) so it would be great chat to others in the same boat 🙂  xx

Mai7
Community Champion

July 2020 chemo monthly starters

Hi 👋 
 

This thread is for anyone due to start chemotherapy in July 2020.  I’m sure others will be here soon but please introduce yourself and you can all help one another through this phase of your treatment.  If you have any questions please post away on here and others in the community will watch over you whilst you are getting started.  Once you are into it you'll be pretty good at helping each other.  You can also ask the nurses on this forum if you have any concerns.  In the meantime, the top tip is always to stay well hydrated throughout chemo, aiming for 2 litres of water per day.

 

Here is the BCN guide on chemo:

https://breastcancernow.org/information-support/facing-breast-cancer/going-through-treatment-breast-...

 

Here’s an excellent article for anyone concerned about hairloss. That’s pretty much everyone starting chemo: https://pinklotus.com/powerup/breastcancer101/chemo-hair-loss-and-menopause-hair-too/

I finished my chemo over a year ago and doing very well again now.  Here is my story which has some chemo tips on how I coped which were collectively shared from others who had gone through the same from this forum:

http://lifeafterlola.com/

If you decide to set up a private group its good to stay on here also during treatment as I know from experience there are some people who watch but don't immediately pluck up the courage to join in.  Your conversations can be a real comfort to others.

 

Best wishes xx