@Mona1 im self employed & training to be a driving instructor at the minute and I tried to carry on working but ended up taking the time off. Everyone is completely different though and if you feel up to working then definitely carry on. For me the fatigue hit me hard at the end of the first week & I had to stop working. I think the mixture of the treatment, appointments every day and being overwhelmed each played their part. I found resting and napping when I needed to, listening to my body, eating regularly and drinking lots of water helped a lot. It did improve over the weeks, and by my last radio/chemo week I could manage it a lot better.
Not sure where you are, but my hospital had a Maggies centre and they offer so much support & resources to anyone and their families who are going through treatment, They even have little treatments like massages and meditation as well as support groups that meet up regularly. It’s all free and you can even just go there for a coffee and a biscuit. Ours is set in a building like a Swedish lodge and I went there on my chemo days as it was way more relaxing than being in the hospital canteen waiting to go up for treatment.
Your positive attitude and mindset is fantastic, keep that up! I’ll be praying for you and all us ladies. Sending positive thoughts and lots of hugs xxxx
I am literally in the midle of my second week and having the exact treatment that you will have…
My Oncologist said this chemio doesnt make you loose your hair it will get thiner but we will managed to keep it !
I am on time off work (long term sick) adviced by my oncologist as I was loosing a lot of blood(more controlled now!) and I am still quit anaemic, immune system can play a trick on me and over looking 20ops in a steri area wasnt the best option for now, something that I am not very happy with but I tottally understand now ,like Willow said fatigue is too much sometimes and with the treatments at differents hours with the long ride to/ from hospital I wouldnt be able to do both, unfortunately😔!
See how you feel ,everybody is different !!
I got told to listen my body and my needs and to do everything that make me happy and confortable during this hard time .
I am trying to take one day at the time ,I do few walks to keep exercice up to date, do my house duties when I am not tired (husband and daughter have been 5*),speak with family an friends on the phone to keep my moral up a bit everyone is been well supportive !!
I break down in tiers sometimes, like we all do I believe but it is OK NOT TO BE OK!!Let it out when you have to cry …but allways have in mind that:
We will do this
We can do this
and soon We will get rit of it
@Neuzapinto thank you so muchfor sharing. What dud you mean by ‘immune system can play a trick on me and over looking 20ops in a steri area wasnt the best option for now’.
Hmm im particularly scared cos I live alone with no family here and I need to keep by job to keep paying bills!
I need to sort and figure it out! Does your team have reviews with you to see if the treatment is working?
@Mona1 i find the most need for help because I have a very energetic 8 year old son. Most of the help I receive is to help with him. You’ll be tired and maybe some other side effects (again everyone is so different) but you can do this. Does your work order a leave of any kind? I’m in the United States and some things maybe be different here.
Hey @Willow23
I am planning to get my treatment done in NYC which is where I am based. They too have a lot of resources. My oncologist said that he will be putting me in touch with a social worker. I also said that I want to work with a nutritionist to help build my body up for whats coming up. I want to keep working even if it is a little . But like you all are saying, I will listen to my body. If I can’t work then I can’t! I want to focus on my emotional needs as well as physical. Talkingto you all helps as I can imgine what lies ahead/!
hey @Kellybug221
I am based in US too, in NYC! My manager knows about my condition and has been very supportive. I think I can take some time off but not sure how long and if it will be paid or no. I will be talking to the HR soon. I know Im being ambitious right now. Its all a journey and Ill see where this goes!
I am a production line Team Leader in a Healthcare factory ( ,the same one providing the drips for my Chemio treatment😌) I look after 20 line operators in a sterilized environment !!
Related to my immune system, I have had a bariatric operation ( gastric sleeve) 1.5 year ago my body and immune system were still adapting to the fact of not having 75%of my stomach and to the suddent weigth lost !!Chemio put your immune system a bit down aswell so have to be extra careful when around other people someone can be sick and you will easilly get it!
I am still going out thoo just not as much !!
Nurses and doctor will let you know all about it on your first Chemio treatment !!
I am based in UK and having my treatments in Cambridge
Nice to meet warrior Ladies from another different areas and countries fight for the some cause …our Life !!
Hey @Neuzapinto Thanks for always being so responsive. I have a concern. So far nothing is confirmed but I maybe receiving radiation daily. The treatment place is about a 20 mins subway/ tube ride from my apt. I wonder after radiation will my body allow me to make that commute?
I live alone in New York City and I dont have a car:(
Uber each day will cost upto $80 which I cant afford.
Do you know anyone in a similar situation or anyone org I cn reach out for help?
I asked my hospital here is NY and they said they want my tax documents and if I am eligible only then will they send me some sort of allowance.
Any tip/insight is helpful!
Hi, I’m a stage 3c too, 3 weeks into treatment of the weekly chemo and daily radiotherapy. I’m dreading the brachytherapy and was wanting a bit of advice about the general anaesthetic vs epidural. I’m terrible at internals and really struggled on gas and air when had to have packing for heavy bleeding. With the general were you completely out of it for the insertion of rods, catheter etc? Was the epidural better for pain relief when you’re lying there for the 2 days? Any advice from you or others much appreciated x
@Jane13 I completely understand how you’re feeling, the unknown is not nice. I had the brachytherapy about 6 weeks ago & had a GA as I didn’t want to know anything about what was happening. When I came round in recovery I was in a bit of discomfort but they gave me plenty of painkillers & I felt ok. Throughout the day they kept me topped up & I felt pretty good, even the not being able to move and walk up wasn’t that bad!
When they came to take everything out the next day it wasn’t exactly pleasant, but wasn’t the worse thing ever. They gave me plenty of painkillers & gas and air & when it was uncomfortable I asked them to stop. The worse thing for me was how I felt after I did not feel well at all & it was a mixture of the GA, morphine & the gas & air and this did take a bit to get over.
The second week, I didn’t want to feel bad again so I spoke to the anaesthetist & he explained the spinal block & I decided to have that. I was worried about feeling everything but I didn’t feel a thing! The block worked great for me - but everyone is different - they gave me a sedative but I pretty much remember the procedure. The one thing that did help was because of the block I didn’t need half as many painkillers & no gas and air so the recovery was a lot easier.
If you have any more questions or need a chat, just let me know! Sending hugs xxx
@Mona1 I grew up on Long Island but recently moved before my diagnosis in Nov 2023. I was planning on transferring my care to S after some issues with my treatment where I’m living now (SC), but they told me I have to wait until after my scans post induction chemo/immunotherapy, of which I have two left.
Wondering how your treatment at S has been ? My doctors have been better the past few weeks so I’ll probably opt to stay in SC, but S is definitely one of the best !
Hey @lallaland
I have still not started my treatment yet . I only met one oncologist/gynac who is recommending me chemorad. I have another appointment scheduled on March 12th with the chemo specialist.
But stay with me and reach out for any questions and I can tell u more as I roll into the program with them !
But all my friends who have had cancer before are pushing and begging me to go with them so I’m sticking to MSK .
Thanks so much @Willow23. Very helpful advice. Will give it a ponder and see how I feel over next couple of weeks and will think if anything else I’m worried about. So good to hear from others further ahead in the journey and all the positive stories x
@Jane13 you’re more than welcome! Have a chat with your nurse and speak to the anaesthetist about it as well. I was so glad I chose the spinal block for the second procedure as I found the recovery from the GA quite hard & was so fatigued for days after. I was worried about feeling something but I spent the whole time chatting to one of the nurses about holidays & before I knew it, it was all done & I was taken to recovery. Honestly, here if you need a chat! Sending lots of hugs xxx
I really dont know how it works in the US sorry !
Here in UK we have a few organizations (Macmillan, Maggies, cancer research etc…) that support “us”(oncologist pacients) with transport,benefits and all kind of issues we can have or may have while we having treatment and after it .
Fortunatelly, I have my Husband, bless him, he takes me to hospital every single day.
About your treatment, every body is different, you will feel tired but see how your body respond to the first week !
Hi Everyone. Just a gentle reminder to please not name any hospitals in the public part of this forum - it is not allowed in our Community Guidelines for reasons described in there. You can see our Community Guidelines at https://forum.jostrust.org.uk/tos
I have removed a few references in this thread. You can send each other private messages if you want to discuss specifics with another user. How to send a private message can be found at https://forum.jostrust.org.uk/faq#heading–send-pm
Best wishes
Bridget
Jo’s team
!!
