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gemd281280 (Essex )

NEWBIE - Further unexpected treatment

hello, I was diagnosed in October with Bowel cancer I(sigmoid ) I had Surgery to remove the tumour on 22nd of November and have since found out that out of the 19 lympth nodes 3 of them had cancer and therefore I will need chemotherapy which was a bit of a blow as I was so sure it was contained to the bowel only .
I haven't got an appointment with oncology untill 11th of January and was wondering if anyone on here had similar and what type of chemo they had /how often / how long for and side effects. I am a single mum of a 7 year old boy and all he knows is mummy had surgery so I'm wondering if I need to prepare him slowly for the effects the treatment might have on me. Any advise and help would be greatly appreciated. Thank you❤️

Lizalou

Hi @gemd281280 (Essex )

That is so frustrating and disappointing for you! But, honestly, the chemo will be fine. (I was in a similar position over 3 years ago). The main issue for me was the frequent hospital trips, when I relied on friends to take me. I also had a couple of days every fortnight when I was very tired and felt queasy.

Everyone is different, so it is hard to say how you will be. But you will certainly be ok to look after your son, as long as you have support from friends and family. But I am sure you will find that everyone is more than willing to rally round.

Best wishes :x:

Jomo9

Hi @gemd281280 (Essex ), I had an operation for Stage 3 cancer in October following three rounds of chemotherapy. The plan was due to be chemo followed by the surgery. Following surgery I had a bit of time for recuperation then was told that I needed 9 more rounds of chemotherapy to blast the area. I think that I have the same number of affected nodes as yourself. This was unexpected but I would rather ensure that everything was treated. I am now on fortnightly Oxaliplatin and Fluorouracil via a port: My main side affects are fatigue and neuropathy. I keep a diary so that I know which days are likely to be worse. It’s useful to have someone available to take you to the hospital as I suffered a few side affects the week I decided to drive myself! I also have issues with an overactive stoma on certain days, although you don’t mention having one. I am off work at the moment but am hoping to go back part time in the New Year. Once you know what chemo you are on then am sure people will be able to advise on side affects a bit more. However everyone seems to have a slightly different experience! :x::x:

Tiffany

Hi @gemd281280 (Essex )

Sorry to hear that you have had a cancer diagnosis but glad that you have been able to have surgery to remove the tumour. Having mop up chemo is very common but as others have said everyone is different and you could be offered a few different regimes. Can't imagine that you will be on chemo for more than three months though so hopefully once you have it you will get back to normal life and be able to look after that little boy of yours.

Chemo was manageable for my hubby - he had a couple of days where he felt pretty crappy so try to ensure that you have some help with your son and maybe in your house for those hard days.

Best of luck with it all and hope that you will soon be cancer free and getting on with life.

Lots of love, Tiffany

Pixie O

Hi @gemd281280 (Essex ) . I'm a month ahead of you with 1 node involved. My Onc has started me on 4 rounds of Capox, I've had my second Oxy infusion today and I'm currently wrapped up on the sofa. The nurses and onc will keep a close eye on you so let them know how you get on and they will tweak if necessary. I'm looking a bit like Michael Jackson in my white silk gloves to help with neuropathy. Good luck with everything 💚 :x:

george1960

Hi there and welcome going on my own experience the first radiotherapy and chemotherapy lasted over A5 week cycle. And i didn't notice a difference.
The 2nd cycle started last week i have felt weak but slowly feeling better every day
:x::x:

gemd281280 (Essex )

Thank you all , I am trying the plan to get my life back to normal , I haven't worked since diagnosed as I work In high pressures target driven job that can be quite stressful. I'm hoping that get back to some normality in new year and get back to work. I am thinking wait for my 1st lot of treatment and see how I react them go from there ? Has anyone else carried on working? Also I have to ask about hair loss has anyone suffered this side affect ? :x:

Lizalou

Hi @gemd281280 (Essex )

How flexible is your employer? You might find that you have lots of normal days but a few 'sofa' days. You will also have lots of hospital trips (so it depends if you work near your hospital or if it is the other end of the county, like me!)

Do you really want to work or are you having to for financial reasons? (Both equally valid!) Have you checked if claiming benefits is a sensible option?

Hair loss......for adjuvant (mop up ) chemo, most of us whinge about our hair thinning and becoming scruffy but definitely not the baldness that we fear.

I really hope you can come up with a good plan. Best wishes :x::x::x:

Lawsey

Hi @gemd281280 (Essex ) just wanted to reach out to you. I am also a single parent and we are likely to be going through chemo at same time. I have had chemo previously and will be having picc line fitted 1st week in Jan and the Folfiri.
Previously I drove myself to and from chemo and kept working F/T . But there were days I simply could not work and couldnt predict which they were going to be. If you are able to get signed off I would recommend you do and make time for self care and treats
I did not lose hair but it thinned plus there is the cold cap to try
The Impact different of chemo different for each individual. But seems to be effective for many for keeping cancer under control
You are not alone
Lots of strength
:x::x::x:

Gypsy

Dear'gemd281280. I am so sorry you have had such a lot on your plate. I wish you all the best with the 'mop up' chemo which I also had for 6 months. I didn't have any hair loss. I think that you will just need to see how it goes really (and each cycle can be a bit different) and go in with an open mind as we all react differently. Make use of friends who offer help! Enjoy this time though and have a lovely Christmas. Love Gypsyxxx

1234annie

Hiya, @gemd281280 (Essex )
I had 41 nodes out with 1 had cancer but I also had a T4 and emvi. I had 6 months of folfox every 2 weeks via a Picc line. Even if it wasn't in lymphs I think you are always better to take the chemo to help prevent recurrance. @charleyb husband worked all though his chemo pretty much, he had folfox too. Everyone reacts differently but if you can try and rest, chemo effects build so you might find your ok for the first few rounds and then rest more towards the end. I found it tough after the 6th. Infusions take 2/3 hours in hospital and you come home with a pocket size pump for 2 days which the nurse dissconnects. Hope you are ok. Annie :x:

charleyb

Hiya @gemd281280 (Essex ) @1234annie is right my hubby worked all through chemo. He did take it steady the first 6 cycles but this was before any surgery and at his poorliest. Once he had all the surgery and was on mop up he sailed through chemo. He worked from home the week of infusion and then back in the office the week after. The first few cycles were easier but it does build up, so take it steady as you go through the cycles. Charlie had very few side effects, mostly fatigue and cold sensitivity. In terms of hair loss, his just thinned, and if you didn`t know him you`d not notice. Lots of luck with your appoint and starting chemo :x::x::x:

DianeS

Hi @gemd281280 (Essex ) I just wanted to say hello, and to let you know that I was so scared of having chemo. I had 12 cycles of Oxaliplatin and 5FU, over a 6 month period. Mine was also’mop up chemo’ but I understand the timescale has now been reduced to 3 months for this treatment. Not everyone has all the side effects, and some people sail through chemo. I found keeping a daily diary of my side effects really helped as you can usually see a pattern building up. We will all be here to help you and answer any questions no matter how small. Best of luck, stay strong love Diane :x::x:

Dan-888

the prospect of post-op Chemo for 6 months further delaying the last operation to remove my stoma and recovery before I could get back to full-on work, was a real blow for me as well, @gemd281280 (Essex ) . And I didn't have a 7 year old to raise alone, either.
I've tried to give a full summary in my profile., which I hope you might find useful.
I managed the chemo pretty well, with only the 1st week of a 2 week cycle being impacted by side effects. In fact, post stoma reversal recovery was more of a challenge, but that was also manageable after 4 or 5 months.
And am fast approaching my 7th year "All Clear".
Hope that has been of some use.
Cheers, Dan

Sia

Hello @gemd281280 (Essex ) just wanted to say hello and to say chemo is not a bad as you think.
I think we hear the word chemo and naturally think and see horrible things. It's not all bad honestly. My husband did a stunt of 6 months and worked the whole time. He did have days feeling tired but nothing that he could not manage his feet were also dry and itchy but he was given cream which help a great deal. He finished his chemo last Oct and his feet are back to normal now and all is good. Sending you lots of love :x::x::x::x:

george1960

Hello i am just on my third session of 6 or 8 and yes there are symptoms and various for most people but you get on a deal with it. It helps if you have a good set of friends and brilliant family around you for the few bad days you don't want to get out of bed cos you don't have the energy but havr already said people differ.
So don't pannick take every day at a time eat healthy.

Good luck George :x::x: