Hi, 3 years ago I had a total hysterectomy followed by 3 session of radiotherapy, I was feeling fine, no pain of any sort, had my checkups every few months and was hoping that my last checkup which was due this July will give me all clear. Wasn't meant to be - early this March had kidney stone and was admitted to my local hospital, had all sort of tests and scans and the cancer has spread to other parts of the body - now it is stage 3. Total shock! Next couple of weeks I will be starting chemo. Has anyone had similar experience?
Hello MHML
I am sorry to hear that your cancer has spread/recurred. It must have been hard to hear. I am glad that you have been offered treatment. How do you feel about the chemo? Do you know what type/regime you will be having?
I had chemo after my hysterectomy- paclitaxel and carboplatin and although at times it was hard, it was doable. If there is anything you want to ask, please do so.
Jane
Hi Hanna
I understand- it must have been an awful shock to hear it had come back. I also was very frightened at the thought of chemo. However my experiences did not match my fears and it really isn't like it is portrayed at times in the media.
When you have the appointment where they tell you the side effects- remember they have to tell you everything possible but it does not mean you will get all or indeed many of them. I would try to go in with an open mind and then if you do have a side effect- call the hospital 24 hour line. I did several times and often just being told something was normal and to be expected helped.
The chemo unit was bright and airy with lots of windows and arranged into bays with reclining chairs. It was very calm. Staff do their best to alleviate any worries.
So side effects;
They tended to be the same with each cycle and therefore predictable after the first session. You have a note book to write in and I found it helpful. So if I felt sick on day 3 on the first cycle then I could take meds to prevent it on the next cycles. Also the thing to remember is everyone is different and you may or may not get similar to me- or you could get mild side effects
- Hair Loss
I did scalp cooling as well. I took paracetamol before hand and that helps. Ask your nurses. This link explains my experiences and has some photos.
With scalp cooling it only helps with the hair on your head so any body hair will go. For me it was around 14 days after the first chemo. With scalp cooling you can still expect to shed hair each cycle. Again it was about 14 days. Try to focus on what hair is on your head rather than what you lose. Being prepared with scarves/wigs is a good plan. You may or may not need them.
- Tummy effects
I had some constipation/diarrhoea and cramps and a fair amount of nausea. But this tended to be the first few days. It wasn't a case of being really ill all the time. The first week was the worst, then started to feel a bit better during the 2nd week and by the 3rd week felt up to doing more.
Fatigue
I slept a lot and found some days I spent dozing on and off on the sofa. The fatigue build up with each cycle. Some days I felt quite weak- other days I was fine to go for a short walk. It was a case of pacing myself and taking lots of rests. I found getting out in the fresh air did help a lot.
Pain
I had some back pain for a few days each cycle and was prescribed meds. I also had lots of the aches and pains similar to if you have flu.
Bloods
You will have a lot of blood tests! but they do help pin point problems. I had low magnesium and was given supplements. I had problems with anaemia and needed a transfusion
Infections
You may be more likely to pick up any infections so I tended to avoid bigger groups of people when my bloods were low. Investing in an accurate thermometer is a good idea and keep an eye on any temperature changes - up or down as these can mean infection. If you do feel unwell at anypoint -call the 24 hour line and they can get you in if needed. It only happened once for me.
Emotional effects
Having chemo can feel like a big deal. I used to talk to the nurses on chemo days and it did help. Call the Support Line as well. It can be normal to feel up and down and nervous. Even with people around sometimes it felt easier to talk to people that are not close to you.
I am now 18 months post treatment- If you click on my name my profile will come up. I am on 12 weekly checks. I have some neuropathy from the chemo still and days when I have a lot of fatigue. Chemo brain has improved.
So although it felt hard at the time- it was doable- keep talking to your team and most things they can offer you medication to help with. They can also adjust doses or even change regime.
Chemo day was a long day but it was good to chat with other people and share experiences. With the scalp cooling- they can unplug you for a few minutes for toilet trips by the way. You'll need them as I had volunteers coming round with cups of tea, biscuits and sandwiches. Take a book or phone/tablet - something to do, maybe some squash/snacks. You might feel quite cold due to the scalp cooling and it can feel nice to bring a blanket from home. I found though I snoozed on and off most of the day. Not so much due to the chemo meds but due to the piriton they give you.
My nails were not too bad- they were drier and flakier and after chemo finished I had ridges in them. I used Nail Nectar from Tropic skin care as it is what I normally use.
Good Luck
Jane
Being fit and active before the treatment will help. It is a big thing to be told you need chemo so if there is anything you need, please ask.
Hi Hanna
Am glad the first one is done and that you are feeling ok at the moment.
Rest up and go with the flow for the next few days and if there is anything you need, then you know where we are
. Also don't be afraid to give your hospital a call if you do feel unwell or worried.
Jane
