Hola again - my hysterectomy went terrifically well so I’m trying not to think I’m gonna get my bum bum handed to me with this chemo, particularly after being made aware of the side effects!
So putting that aside and thinking about what we can do instead of what we can’t, how should I prepare for chemo? I’ve just planned my outfit - button up shirt, joggers with loose waistband, zip up jacket, gillet, trainers, warm socks, gloves, hat and snood. I live alone but have lots of family and friends to help whilst also planning on limiting contact to reduce risk of infection but also trying not to turn into a hermit. I’m aware of the lemon sweets (thank you) but it’s getting real now so any tips and advice from lived experience is most welcome xxx
Hi Samantha
I had the same chemo for endometrial cancer. Mine took place in 2022.
First thing I would say is that they tell you every possible side effect as they need to get your informed consent, however it does not mean that you will get them all. I know I was really worried. Everyone is also different in how it may affect them.
I was on the 21 day cycle - so day 1 at the hospital and then 20 at home. For the first couple of days of each cycle I just felt very tired, a bit emotional and just a bit shell shocked I suppose. It is a big thing to get your head around. Days 3-8 were my worst days and I would pretty much be resting on the sofa, snoozing on and off and felt pretty rubbish. Things picked up by the second week and by the third I was up to doing more.
Comfy clothes are best and I did find it did help me cope better and feel better if I got up out of bed, had a quick shower and come downstairs. I made a comfy area on my sofa and had a foot stool and a v shaped cushion. Several thin blankets rather than a thicker 1. The chemo actually made me feel really hot for the first couple of days so it was a loose tshirt and joggers. I had a little table next to me with a few snacks and plenty of drinks. Your taste may change but I found lemon drinks and lemon sweets helped.
You will have a chemo diary and it can help to note how you are feeling each day and this will help with your reviews and also I found that symptoms followed a pattern. This helped because at my first review my consultant was able to alter my steroids and also provide pain relief, anti nausea meds before the side effects kicked in.
I did have quite an upset tummy and bland foods were better.
It can help to have some paracetamol. ibuprofen and imodium to hand. If you do take any medication or even herbal things it is important to check first.
I did a big clean and big shop before chemo started as once it did, I felt too tired to do much. It can help to get an accurate thermometer to keep an eye on your temperature so you know what is normal for you.
It is sensible to limit contact with anyone who is unwell but they will do regular blood tests and these will indicate whether you are becoming neutropenic and at more of a risk of infections. I tended to limit visitors during the first week as I needed to focus on me and felt too unwell. By the second week I would tend to have 1/2 people around at a time and would be able to pop to the local shop. I did avoid bigger crowds though. Mine was during the end of covid time so it helped as people were wearing masks.
One thing that can also help is to have people check in on you by text but for them to give updates to others that you care about. It can be hard to keep going through the same questions.
By week 2 I would go for walks in the fresh air and sometimes meet with friends and this helped mentally. On days where I did not feel up to going for a walk- sitting in the garden helped. Staying in one room and feeling rough can get you down.
Having plenty of snacky bits in the house can help as you may find little and often is better than big meals. I also ate my main meal earlier in the day. It can help to have a few ready meals in the freezer as sometimes you just fancy something quick. I also bought some complan drinks and made fruit smoothies when I didn't feel up to eating.
For me the worst nausea was in the first week but it can help if you take your anti nausea medication around 30 minutes before you eat. (Domeperidone) If the anti nausea medication does not work- then call your hospital 24 hour line and they can give alternatives.
Having some wipes to hand can help make you feel better if you are feeling sick/rough. I also had a small hand gel next to me.
For the hospital day- thin layers that you can take on and off. My chemo unit was pretty hot. A blanket/pillow from home can be a comfort. There are reclining chairs that I found comfy. They will bring round drinks and snacks/sandwiches etc. You will be well monitored on the day but if you do feel unwell, tell them.
Chemo was hard at times but not as bad as I had feared. It was doable. Its a case of waiting to see how it affects you and then if you do have side effects- call the hospital line as many of them are manageable with medication. Having someone that you can call to pick up a prescription is helpful.
For me the first one was the worst as there is a build up and you are not sure what exactly will happen, they got easier after that. I did find some of the effects such as fatigue did build up with each cycle.
I hope it goes well for you and if there is anything you need, then please do ask.
Jane
