Chemotherapy

Hi Jojo678

It is understandable to feel scared when faced with the possibility of chemotherapy. 

I had chemotherapy in 2022 for my endometrial cancer. 

With chemo there are different regimes in terms of drugs, timings etc. Whilst some side effects may be more commonly experienced, each regime can have different side effects and affect different people in different ways. 

I remember being told that I would need chemo and I was really scared. I only really knew what I had seen in films and books etc. In reality it was not like that at all. Although it was tough at times, it was doable. Where there were side effects, on the whole they could be managed with medication. 

My regime was carboplatin and paclitaxel which I had on a 21 day cycle. I would spend one day in hospital and the next 20 at home. I generally felt rough for the first week, picked up by the second week and by the third week, I felt much more myself. 

Before chemo I had a consents appointment and this is where they talk to you about the regime, why they are suggesting it and warn you about any side effects. This can be a scary time because in order to obtain your consent they have to tell you about all possible effects. However most people do not experience them all, maybe just a few. If you think about the leaflet in a box of paracetamol- it can be similar. 

For me side effects were mainly tummy related, I also had some pain and some fatigue. I kept the majority of my hair as I did scalp cooling. 

For me the first chemo was the worst as I did not really know what to expect but after that, it became easier. I had chemo in a day unit where there were bays and reclining chairs. It was bright, airy and calm. My nurses were great. 

I did find it took a while to get over the chemo once it has ended but do not regret having it. My feeling at the time was to give it a go and have the first cycle. 

If it would help to talk things through do give the Support Line a call. 

If there is anything specific worrying you and you want to ask about it, please do so. 

Jane

Thank you for your detailed reply, that was kind.   I'm glad it worked out for you and I see that it wasn't all easy.  I spoke to the support line before I messaged the online forum, and she gave me some detail about chemo.  I think I probably agree, good to give it a try.  I just worry that if I haven't got a huge amount of time left that it will be spoilt by feeling more unwell than I otherwise would.

I am in the same place with the same cancer and scared. 
It’s good to see the post from jane2511. I await to be given the details.

Sorry to hear that, Happytimes, I think you feel quite adrift when you’ve had the diagnosis and then nothing happens for a while. 

I saw my consultant for the first time yesterday and thank goodness he was very nice. Of the 3 grades of chemo he offered me I have chosen the middle one in strength. It made me feel better when he said we aim to make you feel well enough by  treating side effects to meet with friends, go for walks and go for meals. Hope he’s right!

I’m still scared and it’s unreal talking about prognosis. It’s difficult talking to family about it too. So many things to get your head round.

How are you feeling in yourself now?  I have started getting more pain in the last couple of days but luckily it coincided with seeing Dr. Otherwise it’s difficult to contact GP.

I think the best advice I’ve had is to try and enjoy today. And today the sun is shining!

Thanks, 3 types of chemo, I guess we try and balance the benefits v discomfort.

I feel well supported by all and family are great. Yes Live each day is important. 

I am sorry to read of your pain, that is the main worry for me. 

The 3 types of chemo were:  with 3 drugs, 2 drugs or 1 drug.  The 3 drug one sounded quite brutal and I didn't want my remaining time to be very uncomfortable and I think he was steering me towards the middle one.  It will start in 3-4 weeks.

He was very helpful about the pain.  It's always the first thing that the medical profession have asked me so I think you can rest assured that side of things will be paramount in their minds..  I started off with just paracetamol, then got tramadol in addition.  The consultant prescribed morphine which I now have to move on to when I need to.  I was worrying because I was near the top dose of tramadol and had nowhere to go, and now I do.

Hi Jojo678 

My name is Dylan and I work in the Online Community team here at Macmillan.

How have you been getting on lately?

Thank you for taking the time to post here and start a valuable discussion. I hope you have been finding it helpful. 

I wanted to leave a quick reply and let you know that we published a blog about chemotherapy a few months ago:

• What I wish I had known about chemotherapy: stories from Macmillan’s forums.

I thought I would leave a link to that here as you may find it a helpful read. If you feel up to it, you might also like to post in the chemotherapy forum, where more members with experience of chemotherapy may see your question and share their thoughts.

If you’d find it helpful to talk things through, you’re also very welcome to contact our Support team on 0808 808 00 00. 

Hi Jojo

I had a whipple operation for pancreatic cancer 4years ago and have joined a WhatsApp very supportive group who I  know could help you on your journey. 

It's run by PCUK and you can find more information here:

Pancreatic Cancer UK - Circles

My Hepatabiliary nurse put me in contact with them and it may be politically correct to contact your equivalent nurse to introduce you.

There are many many people in your situation  and to be able to chat(on line) is so important. 

Good luck on journey as life is very worthwhile despite the pain and setbacks it offers.