Anyone want to be my chemo buddy? Start may 9th

[Missy1]

Hi all

Update is that not feeling too bad - gonna take my horse to a local show for an outing later so that will be an acid test.  Have been feeling abit sicky at times but not too bad.  What I have noticed is that I keep getting hiccups and everything seems of popcorn...?!?  Is this just me being weird? xxx  Keep going ladies!!!

[Cal B]

Thanks Sue, that makes sense. Cal

[Sue H-S]

Hi Cal B - do not think milk is a no,no - and please correct me, should I be wrong Tina... I think it is the risk of infection with salmonella or whatever else might float around in ice cream van bought soft ice cream. If anyone might be worried about estrogen in animal milk - do not switch to soya - switch to almond or similar! If you want proper milk - Waitrose Dutchy is about as natural as you can get it, I suppose. xx

[Cal B]

Hi Tina - is all dairy a No No? or just ice cream? - What are people doing for breakfast if milk a no no? 

Cal B 

[Guest user]

Well done bottyboo and Sue
Im now on day 3 after fec and am feeling much better, been out with the family just to the park but the walk in the sunshine helped. Even felt like eating today....nearly nearly had a 99 from the ice cream van until I remembered its a no no! X

[Sue H-S]

Hi Bottyboo - As I shall be one of them - thank you for the good wishes. Very amusing day today, as I put the last preparations in place for what is to come over the next few months. I have long hair, but do not want to cold cap, as I want to use my energy for dealing with whatever side effects may come along. I HATE the cold. So - today went to my darling hairdresser and had my hair cut off - as a pony tail, so I can donate it to a charity, which makes real hair wig for children with cancer. When poor Mike realised that I was deadly serious - and that there was no way around it - i.e. I would definitely lose my hair - he cried.....poor darling. I gave him a huge hug - and he proceeded! So now my hair is 1/4 inch long, if that! Looks quite fetching - never knew I had the shape of head, that could carry off such an extreme style, lol. Wig coiffured, too - so bring it on!!! Great reading all the tips - much appreciated - thank you! xxx

[Bottyboo]

Cal I do indeed have a fab family. My son came home with a montages of pictures yesterday from day placement (SENSE Bourne). He and the lovely staff have made a sensory story book on Leicester City as we are massive fans, being Leicester born and bred. A couple of years ago they sent him a hat and scarf so there he is nghe pics wearing them with a footy clacker.

Good luck to all of you staring this week and I hope those of you that started last week are feeling better each day.
It's getting scarily close now xx

[Cal B]

Hi Bottyboo, sounds like you have a great family around you. Your description of your son fits with many of the pupils I support at school. It is a pleasure to be able to work with great pupils with wicked senses of humour, they certainly light up my day. I am planning to spend time at home continuing developing 'communication books' for individuals who don't have a natural voice. The majority of our pupils need an augmentative alternative communication (AAC) system. We then become communication partners support them to learn and eventually use their book to express their own needs, wants, feelings etc... It is an area in which I feel very passionate about and thus feel gutted that 'C' has interrupted me supporting them! I know that my colleagues will continue to support pupils and families in my absense but I am gutted to be missing the 'achievements' no matter how small they might be, in my absense. 7 off them are heading off to Lincolnshire week after next for a school journey, this is something I have planned and have now handed over to a colleague (she will be brilliant but I wanted to be part of the fun! ) 😔 I know they will send messages and photos so I will just have to enjoy their adventure from afar this year! 

Hopefully you will get some non contact time and be able to use time to get on top of admin tasks.As you say there is always loads of that !!! 

How are you going with your treatment? 

Cal B 

[Cal B]

well done Missy - been thinking about you today. Have been reading 'Tea & Chemo fighting cancer living life by Jackie Buxton - BC nurse reccommended it - easy read about Jackies experience and useful websites along with humour! Her anology of the six sessions is: 

 ' Number one: First one done. Number two: we're a third of the way through. Three already, we're half way there. Chemo Four: I've done more sessions than I have left to do. Chemo five: the next one will be my last: Six, well in 3 weeks time I won't have to come back Chemo. In fact, God and powers-that-be willing, I hope I will never have to come back. '  - I thought this was a good to see each step and to tick them off 😎

Isobelle, thanks for your message and tips, much appreciated. Hadn't thought about having a bag ready but seems a sensible thing to do. 

Cal 

[Flower2016]

I want Jelly and Ice cream! Not fair! Hello everyone. I am ok after 2 days of dog-tiredness. This afternoon feel largely back to usual and been out for a walk and done food shop. Got a rash with antibiotics so they said they had to stop and will have to get different ones after weekend. Being a complete germ phobe at moment. Sat in garden eating icepoles earlier.....so far so good. Xx

[Guest user]

Well done missy! Yum yum xx

[Missy1]

Thanks for your best wishes 😉 Well, first one done and ticked off.  It was ok - am feeling abit like I have a hangover at the mo and have been trying to drink and drink lots of fluids.  Feel like am stocking up to run a pharmacy!!  Everyone at the hospital were lovely and I had jelly and icecream for the first time since I was a kid!  xx

[Guest user]

Hi isabelle
Well i admit i struggled with the cap but persevered....the headband i took was too thick to go underneath so the nurse tried to wedge gauze under it but it didn't work. When it was taken off they all came to look because i had a bright red band across my forehead. ...no wonder i struggled! I had a 2 hour wait to even get started which didn't help my nerves! It took 20 minutes for my body to stop shivering afterwards too,despite all mine and their blankets and heat packs...i must be a real wuss. I was ok to drive home and felt find for 3 hours but then i was up all night with tummy grumblings and feeling nauseous. I haven't been sick and its settling slowly today but i cant take my next emend until 3. Cant sleep either due to the steroids apparently. So just chilling on the sofa trying to eat little bits of toast n fruit n ginger biscuits!
Any tips gratefully received! X

[On a diversion]

Hi everyone,

I hope you are all doing ok.

Tina - how did it go and how are you? I've been thinking of you.

Missy - all the best for today (big hugs)...

Flower and Geraldine - how are you?

Cal and Sue - Sounds like you're both well prepared. Just been trying to think of tips I've been given which you may not have thought of which I've seen on various forums.I bought a blender to make smoothies (Amazon delivered the next day). This week (started Monday afternoon) my appetite has been almost non-existent so even just having an easy smoothie (eg pre-prepared packs of fruit for smoothies blended with apple juice) helps. The Royal Marsden Cancer cookbook is good and discusses diet and nutrition and has different recipes for different issues that can arise while on chemo. We tried a few recipes last week and the all went down well. Perhaps ask other to prepare some for you if you aren't into cooking ... Accept all the help offered, I have two exercise books. One I have used to list important numbers, including a list of people who have offered to do different things to help and for writing down messages/reminders to myself in case I forget things and another I have used to keep a record of which meds I take when and what my temperature and symptoms are so next time I can look back etc. Macmillan have a good app for this too but I find I prefer to write on paper, better/easier in the middle of the night! I  am also using a book to keep a reflective journal. Look after your nails by using nail strengthener, I find Nail Envy good and also keep your cuticles and hands and legs and feet well moisturised (cracks can let in infection). Buy some antiseptic cream and plasters and carry them with you (I keep some in my handbag). Also use antiseptic wipes or hand gel when out and about. Baby wipes are good for the days you might not want a full wash. I also have a stock of cleaning wipes at home for cleaning round the kitchen and bathroom as they are a lot less hassle and I'm all for making life easier. Also I have an overnight bag packed just in case I have to go into hospital (pjs, undies, slippers, toiletries, notepad, pen, book, small amount of cash in case needed). Hope these ideas are helpful! 

Bottyboo, I hope the waiting is ok for you xxx

I hope I haven't missed anyone out here? 

You are all in my thoughts,

love Isabelle 

[Bottyboo]

Good luck for tomorrow Missy. Xxx

[Bottyboo]

Hi Sue I think we have chatted before and I definitely remember you saying you have no choice but to work. I work with 4-5 year old littlest and am currently trying to negotiate non contact time so I can return to work as there is shed loads of administration I could be doing.
Cal I am the very proud mum of 3 children, my eldest is just 24 and is severely disabled with complex medical needs. He is a star, so happy with a wicked sense of humour despite being unable to see and reliant on total 24 hour care. I am like you, missing the kids I work with 😔

[Wosteart]

Good luck for tomorrow missy i too am 44. I wouldn't worry about friday 13th being unlucky i think you have already had your share of bad luck lately otherwise you wouldn't be on this forum ...things can only get better 😄😄 hope it all goes well...remember as much water as you can drink

Tracy xx

[Wosteart]

Hi flower i think the regime is the same maybe we are just having it a different way round...

Tina- How did are you feeling xx


Tracy xx

[Cal B]

my fingers and toes are crossed!!!!! 😎c 

[Cal B]

Sue, sounds like you plan to keep busy with work. Like you I can do paperwork and skype into some meetings but I will miss the face to face contact with the kids. A coffee might be nice, I will take a look at the map .... i am sure we will keep in touch here😎c 

[Sue H-S]

Hi Cal, I have a Hygienist appointment on the Friday. If I really do not feel up to it, will cancel. Mind you, I hope to be able to do it. The dilemma of accepting appointments, whilst not knowing about the chemo has been a major challenge of mine. Thankfully everything should become a lot more manageable now. How it effects us will be as individual as we are - For some the first FEC is challenging and others literally sail through. We just have to keep our respective fingers crossed! x

[Cal B]

Will be thinking of you tomorrow - Missy 

Geraldine - I have an appointment booked for Thurs and also a bone scan on Fri - do you think that is ambitious/ do able?? I know we are all different but hoping to tick these boxes by attending if I can. My other question would be how has you appetite been and do things still taste ok? Kinda dreading starting but also just want to get going so that feel more in control! 

[Missy1]

Hi all

My first chemo treatment is tomorrow!  Anyone else bucking superstition and starting on friday 13th?!  Am 44 and am having neo-adjuvant chemo - grade 3 invasive ductal carcinoma with lymph node involvement - have scans next week..... am trying to take all in my stride but is difficult!  This forum is great x

[GeriF]

Thank you Cal B ...  we're on the same regime. The 1st cycle hasn't been too bad at all so I hope all goes well for you next week. Drink lots of water, try to eat little and often, listen to your body and be kind to yourself getting plenty of rest. 

If you have any questions, just ask away 

Geraldine xx

[Sue H-S]

Hi again, I am a Sales and Marketing Director for a small IT company based in Lancing. Yes, I think they will be very supportive, although I only started the job in February, lol. Your work sounds fascinating. I have a cousin in Germany, who is a specialist nurse and therapist for severely disabled children and young people with a specialism in Autism. Considering your work environment - it does sound, however sad it is - not to work. Luckily I can work from home, when I do admin and the marketing, and plan to do so over Fridays and Mondays. Other days I attend networking meetings, meet customers and such activities, which should be ok - especially over the summer - fewer bugs about! As and when - I live about 20 minutes drive from Etchingham and have friends near Wrotham. Perhaps, when we feel it is ok - we can meet for a coffee - and compare notes? x

[Cal B]

What do you do? I have had to stop working - too risky as I work with some fantastic children who have very complex medical needs BUT I am planning to skype in and keep in touch. I have bought home some 'homework' so hopefully I will be able to still be productive from afar! I am sure your boss will be supportive even if they are a little suprised. C 

[Cal B]

sorry Sue - new to forums and didnt see you previous message !!!!!! I am going to Canterbury for my treatment. I am planning to shop over weekend to get some 'ginger' products and some ready meals just incase I need something quick and easy! Hubby around and can put things into the oven but neither of us are 'cooks'! Maybe I am being too ambitious to think that I might fancy food? I heard that it is important to drink at least 2L of water day before, day of and day after if poss - I guess this helps with veins and also flushing the system ??? I am open to all tips! I will let you know how things go. x c 

[Sue H-S]

Hi again, I start on the 19th - eek - but well prepared - everything in place! the only thing is that my boss does not know anything about the chemo yet - he is on holiday in the States. So by the time I tell him I should just about be preparing for my 2nd session. x

[Cal B]

Hi Sue - I have my first treatment on Mon 16th May. What about you? 

[Sue H-S]

Hi Cal B, it is always good to have people along! Have you already started or are you waiting on your 'first time'? x

[Cal B]

Hi other ladies on this thread. I am following all comments and finding the chat very useful. Hope you don't mind me joining the thread. I hope I can offer some moral support too. x C 

[Sue H-S]

Hi Bottyboo, I am starting on the 19th - so only a day ahead of you - 6 x FEC75. I shall be thinking of you, when I get back home from my first 'adventure'. xx

[Sue H-S]

Hi Cal, I am in East Sussex! Not too far from the Kent border - being treated in Brighton as of 19th. I presume you might go to Maidstone? Like your plan! - I am booked to go to my special hairdresser this Saturday - will have my head shaved and will start wearing the wig (which he will cut to my current hairstyle) straight away. Good luck for Monday - stay in touch and let us know how you get on. x

[Cal B]

Hi Geraldine pleased to see that you are not feeling too bad. I am booked to start Monday 16th May - 6 cycles FEC-T. Met team this monday and had CT scan today as well as seeing consultant re a wig and scarf, cap options. Will get hair cut shorter tomorrow, thinking that if I go shorter now then I will be able to get rid of the wig quicker on the other side!! Well thats my plan😎. I am in Kent and will be checking in on the forum to see how everyone is doing and offer some 'hugs' from a far. 

[helly18]

Hi sue, yes we have nattered on another thread :), you are nearly there now.  I have just nipped across for a nosy from April 16 thread so not sure where people are from but I am sure one of the lovely ladies will feedback. Good luck x

[Sue H-S]

Hi Helly18, I think we have chatted before - just on a different thread. Well, here I am, too - due to start on May 19th - with 6 x FEC75, which will eventually followed by 15 rads. All set up for it - information meeting was yesterday. Really glad about some of the comments - I know what to watch out for, when I go for the first time. Do you know whether anyone is on the thread/s, who is in Sussex?

[helly18]

Good luck Tina,  everyone is different but I dont feel safe to drive home after treatment, heads to muzzy. X

[GeriF]

Good luck for today Tina. I drove home & felt ok.
Glad to hear everyone else is doing ok xx

[Bottyboo]

Good luck Tina xx
Am I now the only one starting on 20th? Still feels an age away.
Glad you are all still doing OK love and hugs xx

[On a diversion]

Hiya Tina,  I wouldn't have been able to (felt a bit dizzy) but we are all different.  Probably better to ask someone to help if poss, will be thinking of you, take care Isabelle xxx

[Guest user]

Thanks all.
Ill be ok to drive home I presume? X

[Flower2016]

Tracey....I am on TAC....is that the same? Same letters just different order......

[Flower2016]

Just checking in.....still ok.....tired most of the time but otherwise ok.....went or a short walk earlier. Good luck for tomorrow x

[Wosteart]

Best of luck for tomorrow Tina we will all be thinking of you xx

Geraldine,isabelle, flower glad everyone seems okay it sounds like we all have similar side effects...is anyone on AC-T

Tracy xx

[On a diversion]

All the best Tina xxxx

[On a diversion]

Hiya, I've mostly achy late this afternoon but everyday is a day closer to this finishing right? About cold capping, I've heard it's best to take paracetemol before hand and take whatever you can to keep warm, those microwaveable wheat bags, blankets, scarves etc xxx

[Guest user]

Hi, im booked for 12 or 12.30, ill find my card out later. Can you take them during it too to help? Were you warm enough? What clothings best? X

[GeriF]

Yes, take a couple of paracetamol a couple of hours before. What time are you booked? X

[Guest user]

Hope youre all still ok
Can you take painkillers during chemo to help with the cold cap discomfort?