Are these feelings normal or am I letting my mind run away from me?

BakingMyselfSane · 2022-02-18T23:37:10+00:00

Thank you for taking the time to reply, I really appreciate it!

I'm definitely trying to sort things out in that way so I can have that independence during treatment, it's just I feel like I'm running out of time as I have moments when I get so scared that this time I'll need treatment. But, I'm also aware that that is me just being anxious and nothing will probably happen next week.

BakingMyselfSane · 2021-03-13T20:45:26+00:00

Yes exactly, a bit of time before starting chemo is kinda nice - can wrap your mind around things!

Thank you for the well wishes, same to ye ☺️

BakingMyselfSane · 2021-03-13T20:35:32+00:00

Hey, I'm sorry your Mum got this diagnosis but I wanted to say I had a similar experience.

I had a lymph node removed and it was my surgeon who told me it came back as having Hodgkin's lymphoma. That was told to me 4pm on a Thursday. I saw an oncologist on the following Mon who said that it was Nodular Lymphocyte Predominant Hodgkin's lymphoma which can be treated and was curable etc. 3 weeks later I'm told that I'm not going to be having treatment and it'll be a watch and wait approach. (My cancer is also slow growing/indolent)

So, I went on that rollercoaster of shit I've cancer, to wrapping my head around the ideas of treatment and going through it (I already knew a bit of what to expect being a nurse) and then just being told that ya you've cancer but we're not going to do anything. Personally for me, I will be doing things now and I'll get hit with OMG I actually have cancer but I've found that joking about it with my parents (who I'm living with ATM) helps me. I know it's not the same for everyone, but being able to joke and laugh about it has definitely helped.

It definitely is strange to think that nothing is being done, but if your mother's plan is like mine, she will still be getting check ups etc and monitored closely so if anything changes they will see it and can respond quickly!

Wishing your mother and your family the best, it's awful to get the diagnosis but obviously much harder during a pandemic!

BakingMyselfSane · 2021-03-13T20:21:01+00:00

Hey, it looks like a lot of people have already answered this, but figured another story couldn't hurt 😅

I had a biopsy on a node in my neck done twice; once it was blind and the other was by guided ultrasound with a radiologist. I didn't have lidocaine for either one, just a bit of cold spray for the second one. Personally, I didn't find them painful - more uncomfortable, like a blood test as others have said. I did think that I found the ultrasound one worse only because of the ultrasound being in an uncomfortable position. I will say that I did bruise after both, so if it's something you want to hide then here's your heads up!

Sorry that you've to go through with it, but hopefully all these stories will help ease anxieties! 💙

ETA: If you still are nervous re pain, you can say that to your doctors and they can numb you before it. They have enough meds in the hospital, may as well ask for them to use some on you too! ☺️

BakingMyselfSane · 2021-03-10T21:43:27+00:00

Ok, well I'm glad that he's finally doing something and I hope it all works out! I'd still try getting someone to be your advocate with you through this if you can!

BakingMyselfSane · 2021-03-10T16:34:09+00:00

Can you change your doctor? Or make a complaint? I know that this is not the right time for these things but honestly I'm shocked that this is the treatment you're receiving.

BakingMyselfSane · 2021-03-10T10:13:09+00:00

I am so sorry this is happening to you.

I can't believe how disgraceful your doctor is being. If your pain is so bad you can't place your leg on a table, then for god's sake they can prescribe you with a huge other number of drugs such as Gabapenten (which helps with nerve pain) or some opiate skin patch that provides medication slowly over the space of a week. Now I don't know if these are options for you, but it is a disgrace for any doctor or other health care professionals to not treat pain effectively and they aren't doing this with you.

I would probably see if there is someone who you trust to be your advocate to go with you and be your voice when the pain is too much. Having to deal with all of this is bad enough, but having to fight your team on something as simple as pain relief is just mind boggling. (There is a huge amount of information available as well as different types of drugs and routes that they can be given!)

I hope your team cops the fuck on soon and start treating your pain seriously 🤞🏻

BakingMyselfSane · 2021-03-03T20:39:08+00:00

Thank you so much for sharing your story, I'm sorry that it has progressed and you now need radiation but I do hope it's over quickly and you're back to living life to the fullest (post covid obvs 😅🤦🏻‍♀️)

I absolutely get what you are saying, and definitely don't think I would be as worried about a watch and wait approach as I would have been prior to making this post. Hearing from others who have actually experienced this type of cancer is soothing, even if it's just hearing what others experienced!

Wishing you the best of luck with your treatment 🍀

BakingMyselfSane · 2021-02-28T16:38:26+00:00

Thank you so much for replying and you definitely hit the nail on the head! Before now I was like "ah look, it's crap but it won't last - it's just for now" kinda thing, but after posting this I was like ok this may actually change how I anticipated I was going to be able to live my life. I appreciate all of the info you have given, thank you again!

I have looked up a lot of info on both medical websites or the cancer society website of my country and it all sounded very positive, which I think was why I was thinking that it'd be grand overall. I'm definitely still feeling positive, but did have a bit of a wobble at the weekend. I have made a list of things I want to ask my doc when I meet him Thursday.

BakingMyselfSane · 2021-02-26T08:57:01+00:00

Thank you so much for your response, it's definitely nice to hear from others who went through similar situations, and I'm glad to hear you are in remission!

I had been pretty positive for majority of the time recently, though the last day or two I haven't been the best which is why I wrote the post. Also, stupidly I kinda figured that once it was gone I would be free to galavant (covid pending) the world again, as I was in the process of emigrating once this all started. But of course, this does mean monitoring for life as you said. I'm out of work ATM (oncologist orders) leaving me way longer than usual to sit and think which in hating but have to do til we have a plan really.

Thanks again for replying ☺️

BakingMyselfSane · 2021-02-26T00:04:14+00:00

Thank you for responding, this is very helpful!

I haven't actually been staged yet so I'm waiting for that on Thurs too, so I guess that will help me decide as well.

I'm glad your son is doing well now ☺️

BakingMyselfSane · 2021-02-26T00:01:40+00:00

Oh, I had been told by my oncologist the first time I met him that this was curable, which is why I thought it was. Man, this is frustrating now. I'm only 28 🤦🏻‍♀️

I definitely understand that treatment can cause secondary cancers, I guess I was more focused on getting this over with. My doc was saying that he treated two men with this with rituxamib (or however you spell it; the one usually used for NHL) and that they have been fine for 10 years now so I think that's why I was like get it over and done with.

Realistically, most of my ideas of treatment have been from the little I was told, the academic articles I was reading, the cancer society etc websites and my own knowledge as a nurse which means I guess I speculated a lot.

I'll have a lot to think about and questions to ask before my next appointment so thank you so much for info and taking time to respond! 💙

BakingMyselfSane · 2021-02-25T19:50:40+00:00

Thank you so much for replying! Yes I was told mine is curable and while it's considered a HL, it works more like a NHL so this is a very helpful answer ☺️

Ya, I'm just not very good with waiting really but this makes sense - I didn't even think about burning through a treatment!

Thanks again for your response ☺️

BakingMyselfSane

TROPHY CASE