starting chemo and scared!

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Well the big day has almost arrived. Chemo starts tomorrow 12th March… or should I say today now as it is past 3am and I am unable to sleep. Lay in bed with silent tears rolling down my face, hoping not to wake up my OH. Been very teary last few days. I think the surgery was easier than what I am about to face. Decided it best to get back up, have a cuppa and release some of my angst on here. I am about to embark on E-CMF over a period of 28 weeks. I am taking part in the Tact 2 trial but typically with the luck I seem to encounter I was selected for the standard chemo over the longest period of time! Right now it feels forever! The part I am most anxious about is losing my hair. I have asked about the cold cap but been told it doesnt work with the combination of drugs I will be taking. I have been reading some of your stories earlier this evening and it seems to me the Epi bit can be the hardest. I would love to hear if anyone has any encouraging news to tell me, if they have experienced a reasonably ‘good journey’ whilst taking this particular drug, as all the stories I have read have not been very favourable which just adds to my misery! With luck if all goes according to plan I should start the CMF part beginning of June. I was supposed to be getting married on 8th August this year having booked the registrars and venue 15 months ago and am now in a quandry as to what to do. I am quietly determined to go ahead even though the oncologist recommended we should defer, which left me absolutely distraught as this was the only good thing I had left to hold on to and look forward to this year. Is there anyone out there who got married during their chemo? I would like to hear anyone’s views who has been there and done that or even anyone who has just been there!
I am receiving my treatment at the Sussex Cancer Centre, Royal Sussex County Hospital, Brighton. Is anyone also attending here?

ps. thanks to all those who responded to my first posting a week or two back on another occasion when I was unable to sleep, under the thread ‘treatment’ in this same section. Couldn’t work out how to get back there and continue.

My heart goes out to each and everyone of you in this ‘club’ and I feel sure you will be of immense inspiration to me over the coming weeks and months.

Jacqui x

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Hi Jacqui

I am being treated at Brighton and also taking part in the TACT2 trial. I am due to start Chemo at end of month as they can’t fit me in beforehand unless I am more flexible on my days. I want an end of week as I have 2 small kiddies and hubby is contractor so he only gets paid for the days he goes in.

I fully understand where you are coming from. I am pretty scared about doing this chemo I will be on accelerated treatment B…so Epi, CGSF and then oral tablets. My friend had BC in her 30’s and had Epi and she wasn’t too bad, just felt like she had seasickness. I keep on being told if I feel crap with this then think about cancer cells that may be lingering. I was also told to look upon this with positive thoughts and my healer has been teaching me to visualise a beautiful place where I feel safe and happy and when I have this chemo I should take myself there.

As for the 28weeks I know its a long haul and that would have been my standard treatment and Jacqui I now its easy for me to say but hang on in there with this in as far as it is doing you good…

Why does the Onc think you should defer wedding?what reasons? Is he concerned about a planned honeymoon or something?

Hair…mmmhhhhh but you know it will grow back I went to Trendco and got my wig last week…ok its not my hair but it will do the job. I have also decided that when it comes out I am not going to hang about and watch it thin etc I am going to take control and shave it.

Have you seen the top tips thread about chemo? lots of great suggestions on there.

I wish I was having my today so at least then we could sit and comfort one another…you will be fine and this chemo is doable…you will get through this Jacqui…we are all here for you.

Pls keep in touch and let me know how it goes…this will be me in a few weeks time…!!!I One thing my trial nurse said was take the anti-sickness stuff don’t wait for until you feel sick just take it.

Sending you a huge hug ((((((((((((((((((((((((((( hug))))))))))))))))))))))))))))))))

Paula x

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Hi Jaqui,

I am further ahead of you in my chemo…i too am on an Eii then CMF regime bit not on the trial…i have just had my 4th cycle of Epi and start my CMF on 31 st March.

I understand where you are coming from the chemo is an unknown quantity for you and can be very daunting and worrying…hence the lack of sleep…

Prior to having chemo i was seeing the chemo as the enemy and not the fact that the cancer was the enemy and the chemo was there to to do and job and kill off any cancer cells…it took time to get my head around this…but once i did it helped me…

Everybody is different on their chemo some people have worse experiences than others…i have not been too bad…i just get very tired on the Epi but i understand that you don’t get the same tiredness with the CMF and if this is the case then
i am hoping to go back to work next month.

Prior to having chemo i have always seen either the oncologist, the regisrar and then chemo nurse. They look at your blood test results, discuss your side effects with you and will provide on going advice as well as tweaking your medication up/down to suit your individual needs.

With the EPI i have always had the chemo nurse sitting in front of me giving me this and i found the experience very personal and questions can be asked etc.

Be prepared the Epi will make your urine red for the first couple of days.

You will receive anti sickness medication to take as well as a steroid based anti sickness tablet too, the same steroid will be given through a drip prior to having chemo. You will be advised to take these even if you are not feeling sickly. You will also be given advice re taking your temperature daily etc and what to do if it is raised etc and emergency numbers etc.

There are other threads on this site that you can find by scrolling through each page or by by using the search facility at the top of these pages. One of the threads is called tops tips for chemo, there are also some of us chatting regularly on the thread called any body starting chemo and you and any body else is welcome to join us there too.

I also tried the cold cap but sadly it did not work for me but i was glad i tried it. It did prolong the falling out of my hair and i probably have agout 10% of it left. They say that hair starts falling out on around te 10th day…i found this to be the most traumatic part…it is not easy…but it is part of the journey…the good news is it starts growing back on the CMF as it is the Epi that causes hair loss.

It was good news for the birds in our garden too as my hair was right down my back and when it fell outetc i put it in the garden for them to make their nests with…

I too was due to get married this year in Septeber, in Rhodes. We have decided to put everything on hold though but that was our personal choice and it has to be your personal choice too.

I hope everything goes ok for you today, just remember to follow their advice, be kind to yourself, listen to to your body and rst when you need to, cry f you need to and laugh when you can and surround yourself with people that love and can support you.

Love n hugs Deb xx

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HI Jacqui

I am also on the tact 2 trial and on the standard treatment just my luck. It does seem a long time but a friend suggested that I look at it in public holiday way easter, may day spring and any thing else that I have in between.

Paula and Debbie have said everything that I would say so wont repeat it. When you go for your chemo session take a large bottle of water and some sweets to suck on you will need these. Drink the water k while receiving the drug and suck on the sweets just in case you have a horrible taste.

Remember our results will help together the other 3 arms of the trial will potentially help others in the future.

The Epi of the chemo is the same colour as my favourite wine, side effects werent that bad remember to take the anti sickness tablets that they give you, I also wore the anti sickness wrist band (one of the tips on the chemo thread). I felt sick but wasnt thank goodness.

I am on my second treatment today. The first wasnt as bad as I thought, my mine went into overdrive. Hoping my veins are better today and the side effects do not get any worse.

Yesterday I had my head shaved as my hair started to fall out on sunday but hey ho my son thinks that I look like the ‘The how very dare you’ gentleman from the Catherine Tate show so both my son and daughter were taking the mickey all night.

I am also planning to go back to work on the 31st March work are taking the lead from me, I need normality back in my life.

Stay postive and take little steps rest when your body says and take it day by day.

Good luck

Hope to speak to you soon.

Sharon

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Hi jacqui, Just been reading the comments sent to you. Isn;t it wonderful that so many people are willing to support one another. It really does help. I shall start my chemo at the beginning of April. Like you Im terrified. Though whenever I read comments on here it always lifts my spirits. I wish you and all the others good luck .
best wishes
Coleen

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Hi Jacqui

How did it go? Let us know

P x

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Hi Jacqui

I am out the other side now and had same chemo as you but no trial. I just wanted to mention that during my Chemo I travelled to Ireland to a wedding, I went to Alton Towers Theme Park for the day (twice actually once with friends and once with OH) and I also took a great liking to clubbing and going to watch bands etc which I hadn’t really done before, there where ladies that where having their chemo at the same time as me that I know also went abroad on their hols, one even went skiing ( I don’t think her doc was best pleased though but she went all the same and had a great time.) I also have 3 children so I was kept quite busy. I hope hearing this may give you some encouragement and help you to see that you could have lots of good days and even some great ones.

I of course had days when I was tired and even some when I was exhausted but mine seem to come more towards the very end of my chemo, but I think if I hadn’t gone clubbing so much I may have had a bit more energy LOL, but as far as we know we only live once so my way of looking at it is enjoy every minute you can, chemo or no chemo!!!

I just hope this may give you a little ray of light to help keep your spirits up.

All the very best to you

Neenie xx

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i start chemo the end of this month and am very nervous but lovely to hear from all who have been through it and come out the other side. I am planning some things to do while I am having treatment such as seeing REM at the rose bowl in southampton in August. i have always wanted to see them live and now they are playing close to home I am going, chemo or no chemo !

Rach xx

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Hi Everyone - Just wanted to say good luck to you when the chemo starts, I know what a horribly anxious time it is before you get going. Jacqui, I had FEC, which contains the Epi bit that you are having (i’m on Taxotered now). If it is any comfort at all, I could more or less know that after a first week of not feeling too great (at all). The second week I would be fine. I was even able to time things so that I was able to fly (three flights actually) from Australia to UK for a week for my son’s half-term (with my oncologist’s blessing even!!). It all worked out brilliantly and was an enormous tonic. It must be so hard for you now having this dilemma about whether to postpone your wedding or not. As you say, it is so incredibly important to have something to look forward to, and you have been planing this for a long time. “Quietly determined” sounds good, and I hope you are able to go ahead and that it is all wonderful. I suppose the main thing you have to remember is that if you are still having chemo then that there is the smallest chance things would not go according to plan - what would the cost be if you had to cancel at a very late stage? (I had to take this risk with my flight - knew I could not get insurance). Equally you may think you would go ahead come hell or high water!! Good luck and do let us know how you get on. Sarah x

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Hi Jacqui

I am on the same arm of the trial as you and had my 2nd epi last Thursday. As you will have been told countless times everyone is individual, but I hope, like me, you get thru this journey without too much upset to your life. I have had no sickness and only one ‘off’ day where I just felt tired and fuzzy headed. As I hadn’t stopped since I was diagnosed in December I took this as a great opportunity to take to the sofa for a day and watch DVD’s!!

Like yourself, I couldn’t stop thinking about losing my hair, didn’t even stop to think of the chemo and its side effects, my hair was all I talked about to anyone and everyone. As the time got closer I made sure I was well prepared with an excellent wig and a few beanie hats. I swore from the onset I wouldn’t shave and stuck to this decision, taking control when my hair starting coming out in the shower a couple of days before my 2nd chemo. I blasted out my favourite tunes and sang along and, quite suprisingly, didn’t even shed a tear. By this time my thoughts were more focused on getting thru the chemo and although losing my hair was drastic, know it will grow back again.

I hope you come to the right decison regarding your wedding, as others on this thread have said it has to be what you want, not the medical staff. Think of how you have visualised your look on the day, hair etc and go try wigs before you lose your hair so you can get a good match. Maybe you could get one specially for the day?

You will have had your chemo now Jacqui and hope it wasn’t as bad as you thought and you are feeling well. Not sure if it is what has helped me but try and drink gallons of water, day and night! If you find your sleep pattern is even worse don’t worry, it will settle in a couple of days, it is something in the anti sickness drug they give you.

Good luck throughout

Val
x

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Thank you for all your respones and advice. By the time I got to the hospital I was in such a nervous state I was offered a tablet to calm me down, and gratefully accepted. The actual administration of chemo wasn’t so bad in hindsight, though I found myself getting rather teary at the time as to actually be sat there undergoing chemo was like a slap in the face and brought it all home to me even more than surgery (at least I was asleep for that part!). The subsequent week hasnt been too good. Have experienced side effects from the anti sickness drugs. Felt queasy and by day 3 was unable to sit still or relax or sleep (it was not disimilar to being on speed, experienced many years ago when on slimming pills). Horrible taste in my mouth, gone right off certain drinks including alcohol, had the appetite of a whole football team (even found myself in the kitchen eating gherkins out of the jar!), heart racing, tingly lips and then by day 6 my throat was ulcerated and agony. Now on pencillin but after 4 days it is still painful though more bearable and Ive been able to move off of the sofa. Chemo nurse advised they can change one of the anti sickness drugs next time which caused the restless syptoms. Not lost any hair yet after 9 days but I guess it is becoming more imminent.

I have already bought a wig from Trendco. They were very helpful and my hairdresser, bless him, came too to
help choose the right one, together with a friend. Everyone who has been privvy to it has been very impressed, though I haven’t the need to wear it yet. Also bought a headscarf from the wig shop and buff headwear on the internet, so well prepared in body if not mind.

The oncologist suggested defering the wedding as he pointed out I will have no hair, still having chemo, though coming to the end, and that I may well not be feeling up to much on the day - although he did say chemo could be planned around it - and that I could find the planning beforehand too stressful. Well seeing as it will be 3rd time lucky for me I am not planning on a huge event but we have booked Anne of Cleves House in Lewes which is a lovely venue, and the date of 08/08/08 was chosen by me for a reason and that cant be repeated! My friends have all said they will happily take over the organsation too, although there isnt really an awful lot to organise. The reception venue is provisionally booked and I have explained what is happening at the moment and they are happy to hold it for the time being - without a deposit - until such time as someone else may enquire on that date. Really the only thing left is to find a suitable dress, do invites, flowers etc.

Next chemo is 2nd April and my OH and I have booked to go and see The Beachboys on 3rd April so fingers crossed I feel ok for that.

Hope all is going well with everyone. Let me know your progress.

Love
Jacqui x