New to all this: Hi, I start chemo next week... - My Ovacome

My Ovacome

17,622 members19,900 posts

New to all this

Farawla profile image
17 Replies

Hi, I start chemo next week after being diagnosed two weeks ago with peritoneum cancer. I suppose I’m still in shock, I didn’t even know what a peritoneum was until that point and now it seems to have taken over my life!! I feel like I need to get prepared, by a wig, at least get my hair cut short or get a head scarf but am trapped indoors by covid at my sisters home. My sons are in other parts of the world and irrational I have the thoughts that I may never see them again. It’s all too much sometimes, I am telling you all this because I don’t want to scare those closest to me, on the outside I am coping under the water I’m paddling hard to stay afloat. It seems surreal that my main focus seems to be what I will wear on my head, a bit like the craziness of people worrying about toilet paper in the shops! Anyway, just wanted to share, thanks for listening.

Written by
Farawla profile image
Farawla
To view profiles and participate in discussions please or .
Read more about...
17 Replies
dexta2005 profile image
dexta2005

Hi, what you are feeling is completely normal. We all have these emotions and even after 6 months, I still have my wobbly moments, but it does get better. I finished my chemo last week and now on Avastin and awaiting surgery, which was put on hold. The first chemo is the worse, because you don't know what to expect, but again its not that bad and I found it got easier as time went on. My only side effects where aches (to begin with) and hair loss. I just wear a hat or hairband. Its not an easy journey, but it does get better and there are lots of ladies on here who are doing really well. Any questions, please ask. Love Jan. x.

Farawla profile image
Farawla in reply to dexta2005

Thanks Jan, it’s nice to hear from someone further up the line, I appreciate that you took the time to reply it is reassuring x

Caleda4 profile image
Caleda4

Hi,

As Jan said, what you are feeling is completely normal. I remember feeling like that as I was travelling to the hospital the day before my hysterectomy which was Nov 2015. I had to travel on a 2 hour journey,and as we went past the Brecon Beacons area I thought to myself this will probably be the last time I see all these beautiful trees in their autumn glory colours. 4.5years later I am still here, I did have chemo which is doable. I was very apprehensive before the first cycle,but after that it was a routine.

What I did was looked to events coming up, like my grandson's Graduation,which I did wear a wig to.Then our younger sone got married the following Sept. I did have my hair back & although spikey I went with out my wig.

So what I am trying to say is that you will get through this. Try to stay positive & take each day as it comes. It is not easy but you can do it.

Love Caleda.xx

Farawla profile image
Farawla in reply to Caleda4

Thank you Caleda, I can just imagine your drive over the Beacons, it’s encouraging to hear your story, my initial consultation left me feeling that there was no future. I can see from your story that there is.

Lyndy profile image
Lyndy

Sending you a hug! Of course you are still in shock and trying to understand what just happened. Give yourself time... you don’t have to rush to do anything, including cutting your hair. The time will come for that but there’s no rush. Once you get into the chemo suite you will find lots of support. Try to relax and let the medics do their thing. Your job is to follow the rules you are given to the letter. Best of luck xx

Farawla profile image
Farawla in reply to Lyndy

Thank you Lyndy xx

Spirit22 profile image
Spirit22

Hi Its perfectly normal to feel that way as others have said. I finished chemo last May and lost my hair. Now I have full head of hair and very thick. Really needs a cut, which due to current circumstances can't ! the irony :D

Its all a bit of a shock for you at the moment, but it will get easier . You will be well cared for and lots of support on here when you need it

Take care best wishes Lesley xx

Farawla profile image
Farawla in reply to Spirit22

Thank you Lesley, it would be interesting for me to know where everyone lives. I am in Surrey, I came here from abroad in January and have been in lockdown with my dear sister ever since. The diagnosis was just the icing on the cake! But actually I am happy to be here with family nearby, this is the place I was born, seems like I have come full circle.

Spirit22 profile image
Spirit22

Hi I am in north Essex , with my husband and 2 greyhounds !

Glad you have your sister with you for support X

Kkaren profile image
Kkaren

Yes it’s all a huge shock at the start but you just have to go with the flow. You couldn’t meet a bigger coward than me at the beginning and when I look back I am amazed at the things I have managed to get through. You will be the same I am sure. I also lost my hair and lived in little chemo caps I ordered from bold beanies. They were so comfortable. By the end I actually quite liked my wig as it took a lot less time to get ready than washing your hair😀 I see my hairdresser who supplies wigs etc has said although she is closed she will still deal with clients with prescriptions for wigs so maybe someone in your area will be the same.

Take care of yourself. Karen

Farawla profile image
Farawla in reply to Kkaren

Thank you kKaren, is Bold Beanie a company then? And who do you get a prescription for a wig from, my doctor or the hospital?

Kkaren profile image
Kkaren in reply to Farawla

Hi yes bold beanies is an online company. I bought them in a few colours but just so handy for wearing round the house. I was given a prescription from my oncologist which I then took to my hairdresser. I think from memory it was for a couple of hundred pounds. I think you are entitled to one from the nhs and any more you have to buy. I have to say it was a sad day the day I asked the hairdresser to shave my head and I never once looked at myself in the mirror without my wig or wee hat on. Just my way of coping. I was also advised by a lady I met to buy one of those really soft baby brushes and baby shampoo. I used both on my head in the shower just to keep my scalp clean and stimulated. Karen

LesleyGB profile image
LesleyGB

Hi

So sorry to hear that you are going through such a mix of emotions, but it is normal - I think it would be abnormal not to feel like this! What a welcome you have had back to the UK - so glad you have your sister.

I was just the same. It was such a shock to get the diagnosis (27 Feb) but I think you do come to accept it. I I couldn't think of anything else. I laid awake for nights worrying about the future, whether I would be around for Christmas, who would look after the cats (!).

The idea of chemo terrified me but surprisingly on the day - I had my first on 17 April, next one is 11 May - I was very calm and glad to get it started, as it was the first step on the road to recovery. The staff were amazing, I took a book to read and some lunch (though sandwiches were provided) and the chemo wasn't painful, and it was good to chat to other people in the same position.

The only symptoms were constipation (sorted after 3 days), aches and pains for a few days and tiredness. I never felt sick but took the anti-sickness tablets religiously. My hair is coming out now. I did try to coolcap but found, even after 15 minutes of trying it (not turned on - how wussy am I!) it had to be so tight it gave me a terrible headache and added a couple of hours to the treatment). I have three caps on standby and hair does grow again.

So many people have been through this and coped - this site is brilliant for getting information from women who have been through treatment and out the other side. You can ask any questions you want - no question is trivial - and in a few months you will be responding to those at the beginning of their journey. Oh, I gave up Google - a lot of it is all gloom and doom and goes against the information I have had from the hospital.

I am in Welwyn Garden City in Herts and having treatment at Lister Hospital in Stevenage. I live alone but have amazing family, friends and colleagues and 7 cats. I am still working at home so I find that keeps me in touch, with online coffee breaks with colleagues - keeping busy definitely helps - I am in the middle of blitzing the whole house at the moment!

Take good care of yourself and lots of luck for your first treatment. Let us know how you get on.

Lesley

x

Lymbrae profile image
Lymbrae

So sorry you have this diagnosis, especially at this time. As the others have said, your emotions are all very normal. The thought of losing my hair was the thing that made me cry the most at the beginning. I did manage to stick with the cold cap though I still lost a lot of hair, especially after the 1st chemo.

I felt completely lost when I was diagnosed & I think that sorting out headwear was a good way of taking control of something. There is a surprisingly large choice of headwear available online if you search for chemo hat or headwear. There are also online demos showing different ways to tie scarves into headwear.

Trying to protect our families from the worries that we are experiencing is an ongoing challenge.....

At least we have this community, full of lovely people with lots of experience between them/us.

Farawla profile image
Farawla in reply to Lymbrae

Thank you, I am already appreciate of this online community, in a few days I’ve learnt a lot and felt connected, I hope one day to contribute more myself. Yesterday my long hair was cut short and surprisingly I don’t hate it!

Hi Farawla. I've been off-line for a while & now trying to catch up on Health Unlocked. I'm sure all the answers on here have reassured you but there's just one thing I want to tell you about : I was diagnosed Nov 2011. I live in Australia. We have a beautiful tree here called a Jacaranda and it flowers in November (when I was diagnosed). I kept looking at it's beautiful blooms and wondering if I'd ever see it in bloom again.

That's 8.5 years ago. Not only have I seen it bloom all those times, but I've also seen our son get married and also our daughter. They both married just the best partners - I couldn't be happier with their choices. We now have a grandson to our daughter and our son's wife is due in a couple of weeks. I am truly blessed.

Don't worry about the fact that you're thinking about wigs etc - that's your brain looking after you - doesn't want you to think about the more scary stuff. Blots it out.

I know all the thoughts that will go through you head. But you see, we are not all statistics. The damned disease has got into your body but you must fight it from your brain.

Best wishes. Pauline.

Farawla profile image
Farawla

Ah Pauline, what a lovely message, I shall think about your jacaranda tree from now on. It has been a rollercoaster these past few weeks, physically and emotionally, I like the times best when I just completely forget about it and just live. The times I don’t like are when my mind tricks me into getting maudling and going over worst case scenarios. People like you give me hope and perspective, thank you again for taking the time to write, much love x

You may also like...

New to all this

I was diagnosed a few wees ago, a complete shock as I was having a hysterectomy and ovary removal as

I'm new to all this. A question about abdominal pain.

cycles of targeted chemo. My CA125 was 2200 at diagnoses, rose to 5500 before chemo started, and...

Wishing all the forum ladies and support workers a restful and peaceful Christmas and New Year.

discomfort. On reflection this has probably been getting worse since round 10. I am also on...

Good CA125 result, and new paper re aspirin suggesting all cancer patients should be offered it

has an anti-cancer effect. Here is a link to a paper last week on the evidence for aspirin as an...

Happy Christmas and a healthy new year to all.