Hi have been thinking about you ,it must be your 4 th week now how are you doing? Bet it's tough but just wanted you to know you re in my thoughts x
Yeah week four so back to chemo next week. Chemo makes me feel really sick but have been told anti sickness drug will be added next week. Its always on my mind if its working and i really really hope it is.......
Did your bottom get sore and if so what did you put on it.
Hi I know it’s such a worrying time and it’sall you can think about but I’m sure you’ll get through it.
Yes my skin broke out badly I was told only to use what the hospital gave me which was proctosedyl ointment, morphine gel and also a pad type think called Polymem which really eased the pain - I was also given oral morphine ask your nurse or radiographers what you can get - I persevered for a bit too long thinking I was being brave - it was daft as they told me you don’t need to suffer pain and they can help you manage it.
hopefully the anti sickness will help I was lucky and didn’t feel too bad.
Youre on the home straight
Gilliebean, I worried about the same exact thing and couldn't understand why it took so long to start the treatment. I did not want to do any of it and I hate people messing with my bum, but I was also anxious to get treatment started. It took 6 weeks to get an appointment with the surgeon and another three weeks before treatment started. The surgeon told me that waiting 6 weeks did not cause the cancer to spread or worsen; however, I waited too long to seek a third opinion and I deteriorated pretty quickly (so it's my fault - not theirs). My docs work in different locations, but coordinate as a team. I didn't know that they weren't in the same location when I made the appointments.
I cried the first time I walked into the chemo room and some days shed a tear or two during the radiation treatment. I felt silly for crying because everyone around me was so brave. I had portable chemo, but I could hear the pump as it worked throughout the day and night. The radiation equipment makes a noise as it circles the body. I kept my eyes closed and held my fingers over my ears and tried to sing songs in my head for distraction. For some weird reason it freaked me out to see the machine in action. I would only allow myself to cry briefly because it only made me feel worse. And there were so many others in much worse shape than I was. Most of the patients in the waiting room were well dressed and well groomed. It took everything I had in me to shower and get dressed and get to the treatment center. I have a surgeon, a chemo oncologist and a radiology oncologist. I'm 5 days short of being 3 months post treatment. I am feeling much stronger and can actually clean my house now. The pain when going to the bathroom eased up around two weeks after my last treatment. It was/is still painful; however, the pain is tolerable. I'm forcing myself to eat throughout the day up until I fall asleep at night. I'm determined to put the weight back on. The nausea still hits (the docs say I should not still be nauseated); however, I have found a system that seems to be working. I take a pain med and an anti-nausea med as soon as I wake up. I lay perfectly still for about 20 minutes giving it time to work. This has made it easier for me to tolerate food. I'm sure your docs will suggest small meals throughout the day, drink tons of liquids, and avoid meat, sugar and diary which is hard to digest. I agree with SandsJ that using a topical lotion and ointment helps tremendously. I asked my doc about the ointment after researching on-line. The lotion helps the skin to heal and the ointment helps with the pain when going to the bathroom.
There is a huge movement towards THC being used for medical purposes. I am not brave enough to go with non-tradtional treatment, but if I had easy access to it I would be willing to try as a combination treatment. Marijuana is illegal in TX and I have found that synthetic marijuana, which can be prescribed to cancer and HIV patients, is not the best route for me.
I have a friend that was diagnosed with stage IV lung cancer two years ago. He will be on chemo for the rest of his life, but he has never been sick from the chemo and has continued to work on his land. Everyone reacts differently.
I know if I had done things differently from the beginning I would have had a much easier time with the treatment.
I hope the next few days fly by for you. I will keep you in my thoughts.
Hi Texas girl
thank you so much ,I had a few tears reading your message it's comforting to read your account and gives me hope as it sounds that yours was a similar stage to mine. I think thet waiting and the build up to treatment is a nerve racking time and yes why does everything take so long! I had my lymph node out in September and they found the squamous cell however they could not find the primary , as I said missed it twice in tests and then pet scan picked it up ,then biopsy in November confirmed it , it just seems such a long time from when it was in the lymph 4 months!! Incredibly long time with cells not knowing where they are going to next! I do hope that you will get good results in feb will keep fingers crossed that all will be good for you and thanks for taking the trouble to reply it is really helping me ,love gilliebean.
thank god you are ok have been worried about you !good luck with the next lot of chemo !ask them if you can have andansatron it is the most expensive of the anti sickness drugs but one of the best! In all my operations over the years I have been great with that one where as others tend not to work or make me worse. I know they don't usually give that one unless you ask for it . Haven't put anything on my bottom I think sands is the best one to answer that . Just got my exemption certificate for prescriptions as I m sure I m going to need it . Keep strong only two more weeks for you!! Love gilliebean
will be thinking of you and hope you get through this next week ok ,you re almost there and I have my planning on Wednesday! how long did it take from your planning to when you started my nurse reckons it's very quick so I would hope to be started by Monday! Good luck anyway hope all goes well x
Hey there Gilliebean,
So was the squamous cell not the primary? Or did it just get overlooked twice? I read last night that the amount/strength of the chemo is based on the size of the tumor. My guess is that they hit it harder the larger it is.
I had to wait about the same amount of time as you are waiting for treatment to start. Maybe that's a good sign. It seems like they would jump on it quickly if it were an agressive cancer. It is hard not to worry with every ache and pain.
You are in my thoughts and Janelucia as well. I'm thankful to have found you guys for support and ready to feel as good as SandsJ.
Big hug, Sheri
they found the squamous in my lymph in the groin as it was the size of a duck egg but they couldn't find the primary then they picked it up on the pet scan in my bum so it had already spread to the lymph which they removed in September then they operated on my bum in November so now I have to have the chemo and radio for any cells that are still there so will have radiotherapy to my pelvis bum and groins and 2 rounds of chemo each lasting 4 days ,so I bring it home in a pump attached to my picc line. I ve now got to wait another 2/3 weeks because they don't have enough chemo nurses available for the ammount of patients needing chemo!
Thanks for being here
Hey thinking of you hope your sickness wasn't as bad this time and that you have managed to get through the week I bet it's been tough and have been thinking of you and hoping that you are as alright as it's possible to be! You re nearly there! Sending hugs your way .
That sounds like a nightmare. I'm so sorry you have to wait to start treatment. I was scared of the treatment, but I was also scared it was spreading during the wait. Apparently that is an unfounded worry.
We had similar experiences except the docs wanted me to have chemo/radiation first and are hoping that surgery will not be required. No promises since it was quite large and in the wall. I still have an ulcerated area so I'm constantly worried about surgery. I will probably be bombarding you with more questions if that happens.
Keeping you in my thoughts and sending warm wishes your way.
Hi Janelucia hope you are ok been thinking about you and wondering if you ve finished your treatment ,haven't heard anything since you were going to have your last lot of chemo do hope you re ok any way just to say you re in my thoughts ,Gillie x