worried

2 minute read time.

FormerMember

17 Mar 2011

So just getting the hang of this whole blog thing.

Am finding it much easier to work out what i am feeling by writing it down, everyone keeps wanting me to talk and i don't have any words that they are looking for.

i had a lump removed from my abdomen last june which they discovered was paraganglioma, after a octreotide scan in october they decided it had all been removed and everything was great. had a follow up MRI in feb and they found lump in my liver. they sent scans to Jimmys in Leeds to the liver specialists to see if they could operate and whilst they were looking at PET scan results they have also found a growth on my hip bone. they decided not to operate as i will have to have chemo for my hip so don't want to do surgery when will be having chemo anyway.

So saw my oncologist today and he has said i have to have another CT and an MIBG scan then will be starting chemo.

i am so scared about the chemo! There are so many people that go through you it so my practical side is telling me it will be ok and will get through it, but the other side of me keeps thinking about how ill i may be and the hair loss that he has told me will definitely happen as am having 3 different types of chemo at the same time.

i could handle the thought of surgery as been through that and know roughly what to expect but with chemo i feel lost. and no one can tell me how it will e as they say everyone reacts differently to it.

i know the hair loss is going to hit me hard, i think it is because it would be like a big sign over my head telling everyone that i'm ill, i can hard my current surgery scars and people treat me like there is nothing wrong, but without my hair everyone will know i'm ill.

im 26 i should be starting a family now not spending last year of my life and more dealing with cancer.

im sure some of this may sound selfish to others and i know that there is always someone out there worse off but i just don't really know how to react anymore, i had a breakdown last year and am sure i have depression but i haven't really told anyone.

i feel so sad all the time.

FormerMember over 14 years ago

Hi, No you dont sound selfish in any way. Your only 26 and have had some horrible things to deal with. i went through chemo last year and everyone reacts diffrently . The best advice I got was to listen to my body and rest as much as possible.. even on the days i felt ok.. eat even when you have no appetite..

.

Hard as it is talk to someone..There are lots of people that will help. It took me a few months from being diagnosed to go and talk about it. I didnt want to worry family and friends anymore than needed and was trying to be strong..I went to Maggies center and the woman I spoke with was brilliant.. Like you i couldnt find the words, she helped me find them...

I hope it all goes well with you
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FormerMember over 14 years ago

Hi Helen, my heart goes out to you hun.

You are not in the least bit selfish. Why shouldn't you think about yourself? You are going through so much and at such a young, it isn't right!

I would urge you to speak to your GP if you think you are depressed. It can only get worse if left untreated.

You will get a lot of support on here, so please continue to come on and make friends. There is always someone here to talk to.

I hope everything goes well for you.

Best wishes, Christine xx
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FormerMember over 14 years ago

Hi Helen

I think I know how you're feeling. I was told that a benign lump I had successfully removed from my thigh was actually malignant with a rare cancer not many people know about, and if i dont have chemo it will very likely return and will be incurable. I'm about to start chemo in a week or so and like you one part of me is telling me it's going to be ok as so many people get through it, but the other side, the side effects etc, scares me and I'm panicking about the whole hair loss thing which I've been told will definately happen due to the two drugs I will be given. When do you start chemo? I'm just starting to get my head round the idea of having it. Things are moving so fast I can't keep up with it all and I get very down when it overwhelms and consumes me. But this site has been a great place to offload. I have written a few blogs where I've rambled on but I found as soon as I wrote my thoughts down i could forget about them, if anything for a night so I could sleep a decent night's sleep. I wish you all the luck in the world. We all have a hidden strength we dont know about until we really need it. Am happy to chat if ever you need to. Big hugs, Mei xx
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FormerMember over 14 years ago

Just reading about hair loss and remembering how I felt knowing it was going to come out. I had long hair and was really freaked about losing it... Then decided if it was going i'd do it my way. I had it cut shorter.. another cut a few weeks later and while doing this I arranged a Hair shave night. In other words I took my hair before chemo did. Timed it for 3 weeks after first session of chemo. We booked a hall and a DJ and charged folks entry. (family and friends) We had to hire a bigger hall with a week to go, People were so kind and donated gifts for a raffle and on the night we made over £1000.00 and donated the cash to cancer charity. That made it a much more positive experience for me...

As for chemo It wasnt anywhere near s bad as I imagined it would be,,, But i have a very over active imagination when it comes to this sort of thing... But I have heard other people say the same thing...rest as much as you can.... dont run around even if you feel ok.. You'll be out the other side before you know it

again best wishes and good luck with it all..
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FormerMember over 14 years ago

Hi Helen,

You have taken a very positive step by writing a blog. It certainly helps to let your feelings out and there is always someone on here to listen.

Once you have had your first chemo you will feel more relaxed as you will know what to expect Regarding hair loss, I have lost my hair three times now and there are several options, other than walking round with a bald head (although that is fine and many people do), There are many types of scarves, hats and wigs and really, it is whatever makes you feel comfortable. I wear a really natural looking wig because it makes me feel better and I also put some make-up on every day for the same reason. You will find what is best for you and that may make you feel more positive about other things.

The very best of luck with the chemo and do keep in touch.

Take care,

Love lizzie xx
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