feeling alone/need support and advice

Posted by Mich x on 28 Feb 2012, 01:49PM

Hi girls I am still fairly new to blogging but wanted to get my thoughts out there.  I have had two surgeries now and have been dealing with an infection from wound of the last surgery for a couple of weeks now (love to hear if many others have suffered with infections following surgery or drains).  I am still on antibiotics and I am due to start my 1st chemo session on this Friday 2/3.  Needless to say I am frightened and have lost my positive thinking and sense of humour at present.

I also live in the country (65-70klms South of Geraldton in W.A.) with no family support and a few friends only because not lived here that long and have worked from home mostly.  Hubby works away and will be home during the first few days of my treatment (is there a time when it would be better for me to have him home?)

I could really do with as much advice and support as you are able to give me.  Advice regarding foods, care of body, loss of hair (it gets very windy here so don't want the wig blowing away off my head :-). etc. etc.

Thanks girls LOL

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Hi Mich

TonyaM's picture

Welcome to this site where we all support each other and share information.  Firstly,I hope your infection has cleared up before chemo otherwise it maybe delayed. Your first chemo is the unknown,you don't know how you'll react. I was ok for the first few days after and then,day3-6, I felt like roadkill from a mack truck.They will give you medications to combat nausea and fluid retention.I had taxotere/cyclophos.combo.My muscles and joints ached,my mouth felt like it was lined with fur,lost my appetite and was sooo tired. I stayed in bed on those bad days.Around day 10 is when your white cells are at their lowest and you are more prone to infection so you have to keep an eye on your temp. My hair began to fall out after about 2 weeks.Some women like to shave it off and some like to cut it short and let it go bit by bit.(that was me).I bought an expensive wig but hardly wore it cos it was hot and itchy.However,it's good to have for special events. I mostly wore cotton bandanas or caps which I got online from www.headcovers.org

The only food I could eat was vegie soup,crackers,lemon cordial and lemonade iceblocks- don't ask me why!! We are all different and some ladies here have breezed through chemo and others have had a hard time of it. It's hard to predict so go with the flow. You won't feel alone on this site as we know what you are going through.There is always someone here to chat with.If you have any questions then blog away.Starting chemo IS scary but once it's underway you'll feel more at ease. Losing your hair is often underestimated so vent if you need to.I hated being bald and whinged alot! 

                         Tonya xx

Mich x's picture

Thank you Tonya I really appreciate your support and for making me feel it is okay to feel the way I do at present.  I am very worried about getting very very depressed and falling into the big black hole that is so very hard to crawl back out of and if I do fall in then being able to get back out.  I am sure you girls will help me stay out of "the hole".

I have been looking on the www.headcovers.com website and it is amazing.  Is it an Amercan site and will that make much difference with the ordering and delays.  I organised a wig in Perth but the lady unfortunately forgot to put in the wig number etc. so I have to go back in and start from scratch.  grrrrrr.

My daughter is getting married on the weekend of Easter plus she is also having a "High Tea" at the Duxton in Perth put on for her by her bridesmaids on 25th March so I would like some new hair if mine has gone/going by that stage.

I also don't know how to try and organise my chemo (if I can) around the shower tea and wedding so I am not feeling and looking tooooo yukky.

I am very much over this infection because I have some doctors say it has gone and others say no it is still there.  It is better than it was but personally I know it is definitely still there.  Will be interesting if they go ahead with chemo on Friday as I have to travel back down to Perth again for it at this stage as they are monitoring a problem with my heart at well.

I am just a bit over it all and already exhausted and I haven't even started treatment.  I will also be having 7 weeks of radiotherapy after the chemo.

Look forward to hearing from you and the other girls.

xoxo

Cheryl D's picture

Hi there Mitch,

being sad and down is o.k., crying and screaming can be good therapy so get into it.

 If you still have an infection I doubt you will have chemo as it lowers your cell count and they dont like that in onc. land.

Foods are a hard one as I couldn't taste a damn thing and felt like crap ( Taxotere, Cabolatin and Herceptin )most of the time and put on 20kg with this and the steriod combination so dont worry on that one as it is coming off quite quickly now which is great.

I honesltly felt shocking for my last 3 chemos and didn't want to know about them at all, luckily family and friends dragged me there kicking and screaming but I got through it and so will you.

I just finished 6 weeks of radiation and have the burns and fatigue big time but it is a far more enjoyable experience than chemo.

I still have to have Herceptin in my PORT every 3 weeks for 6 more months but I look back at the time when I was having chemo and it was like an out of body experience, I don't know how it happenend but it did and I'm here to tell you and others about it and so shall you, rest, yell,cry, laugh and write to us when you need,

Cheers

Cheryl

 

Lea W's picture

Hi Mich, 

I finished my treatment just before Xmas, the same, 6 x chemo plus 7 weeks radiotherapy. 

Everyone is very different, you just need to be tuned in to your body and try to look after yourself, drink lots of water and eat healthy. I found I just went with it and then looked for answers as each different thing arose, and there were too many to go into in depth.

Two things I found useful were Aloe Vera juice, for internal, and Bi Carb soda in my bath tub. I would have spent all day in the bath if I could have.

I started to loose my hair on day 14 after first treatment, from everywhere on my body.  I found some good headware from Gotcha Covered, delivered very quickly. I now have hair again, not much but its a start.

Stay happy! This helps.

Lea

Mich x's picture

Thanks guys, it is so lovely to hear your words of wisdom and knowledge cause I know you have been there, done that!!

I made a visit to our local E.D. tonight and luckily saw the same nurse I have seen twice before.  She assures me the infection has improved but hasn't gone completely.....  I will go back and see her Thursday morning before I do my trek down to Perth ready for the chemo the next day to see if there has been any major miracles. 

She did mention about antibiotics via a drip but I would have thought if the surgeon felt I needed that he would have arranged it while I was down in Perth.  He really wasn't that worried because I am reasonably well in myself with no fevers etc.

Oh well, only time will tell.  One day at a time I reckon.

I am planning to get my hair cut shorter (second stage) plus organise my hair (wig again and also go to a dress fitting with my daughter for her wedding dress so I do have some good things to look forward to :-)  I will look up the websites Lea and Tonya have told me about, thanks again.

LOL xoxo

Hi Mich

susieFA's picture

As you will have seen by now you are not alone on your journey.  The first chemo is especially scary because you don't know what to expect - I am sure your doctors and nurses will do everything they can to make you as comfortable as possible but you do need to know that it can take a bit of tweaking.  I didn't speak up quickly in the beginning if I was feeling unwell or in pain so please do - they want to help you through this.  I didn't buy a wig but then, I didn't have anything nearly as exciting as my daughter's wedding to look forward to!  You might be able to adjust your schedule a little bit to accommodate, however, speak with your oncologist.  And an infection can make a healthy person feel quite low - be gentle on yourself.  You are among friends here.

Unlike Tanya, I didn't go for the iceblocks although I know several friends who did.  I am still drinking soda water with ginger cordial and it took months for my diet to return to normal but that is entirely my thing - nearly everyone's tastebuds get affected temporarily but lots and lots of women are only affected for a short time.  I do miss my wine though! (the doctor is thrilled....)  I know you're unsure right now and thats okay.  Feeling low and flat is very normal - we really do understand.

Try hathouse.com.au.  Melbourne based but I think they ship anywhere.  Great range and very reliable.

Good luck to you Mich.  Stay in touch as best you can - you won't always feel like writing, however, I found just reading the site helped me alot through the journey we are on.

s

Mich x's picture

Hi Susie

Thank you for your support.  I am feeling better just knowing that you girls are out there and will be there for me.  I read your previous blogs and you have also been down the feeling alone path.  I know my family and friends would be devastated if they thought I felt alone but as they haven't been through it and are all so busy in there own lives it is just the way things are.

I know I am so lucky to have my daughters wedding and shower tea to look forward to but it is also a very scary time for me in hoping I will look fine and that I will be well enough to be there and make it through the day.

Take care, I hope your journey is going okay at present.  I am also here for you if needed.  Thank you so much again, much appreciated for all your support.

I am packing up ready to drive down to Perth tomorrow,  I will be an expert by the time I am finished I would think.

Mich LOL xo

Cheryl D's picture

Don't forget the Look Good Feel Better course, it works wonders in giving new ideas on make up, skincare and head wear, they give great products to you as well so sign up as soon as you can and get some hints before your babys wedding if possible.

I am glad you looked back to see we have all been through similar fears, that was a great idea and should be suggested to all newbies I think, then you can really know we all know!

Wishing you the best,

Cheryl 

susieFA's picture

Hi Mich.  Wondering how you're feeling now and if you're back from Perth? I hope you're coping okay.

s

Mich x's picture

Yes back from Perth, arrived yesterday arvo.  I am feeling very very tired.  Struggling to do any household chores and just wanting to lay down all the time.  I have a mouth like the bottom of a cockys cage already and a slight headache and just feel crappy really.  House is a mess and I am half unpacked but just have to take it one little bit at a time.  I have a long way to go yet.  Hubby flies back out on Thursday so not looking forward to him being gone but I will survive I am sure.

Thanks for caring and asking.  I not a happy chappy at the moment I am afraid and scared of what is ahead.

LOL xo

Liz in Darwin's picture

How are things at the moment, Mich? I hope they have brightened a little. Compared to many people I had a relatively easy ride with chemotherapy (no nausea or extreme fatigue, though I did have a scare with my heart on one drug combo). But  I still felt very frightened (borderline paranoid when it came to infections - I was virtually a hermit for slabs of the time) and low during a lot of it. I went to a hairdresser's and had my hair shaved off when it started to fall out - went early in the morning so I was the first customer, and the ladies in the shop were lovely. Didn't get a wig but got lots of good bandanas, which I wore on top of a VERY useful padded headband that kind of held them in place - specially designed for this purpose and sold by Wig Affair in Sydney (they advertise on the BCNA site and I think take mail orders: http://www.bcna.org.au/ldirectory/listing/wig-affair-sydney-nsw ). I was alone for much of the time during chemo as I came to Sydney from the NT for treatment (long story!!), so I can really identify with your loneliness while your husband is away. My eating wasn't too badly affected, so tried to boost my spirits with yummy, healthy food treats and trips to day time movies (which tended to be empty - free of sneezing people!). I hope that plans are coming along really well for your daughter's wedding, and that you keep popping in here when you're feeling low. We can all identify!

Mich x's picture

Hi girls

Nice to hear from you all.  I am feeling better at the moment which is good.  Managed to clean the house today plus the dog and her bed so that is a bonus.  I have a social worker popping in this arvo to see how I am doing which is nice.

My next little drama is happening, which is my hair.  I have the warning signs ringing their bells.  Itchy and sore scalp (feels like how it used to feel when I took a hair band out if I had had my hair up all day.  It also hurts when out in our lovely wind up here).  Sooooo I need to psyche myself up for this one I think. 

I am off back to Perth next Wednesday for medical onco appts etc. etc. and then my 2nd chemo on 26/3.  I will stay down in Perth then till after the wedding as hubby will fly in for the wedding and can then drive me back up home before flying out again.  Ho hum one day at a time.

I am so lucky to have all you girls to chat with so I thank you thank you thank you.

Hoping that you are all going well on your journey as best as can be expected under the circumstances or if you are in recovery that you are enjoying life after the BIG BC.

LOL Mich x


Mich x

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  • About:  I am 58 years old, I live by the ocean in regional W.A., I am very happily married with two kids and 3 very precious grandchildren

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