Here is @NewYork2011’s post about pain with lymphoma. Any advice would be appreciated.
My name is Becky,this is my first post after introducing myself yesterday. I was diagnosed stage 4,feb 2016. Getting your head around the aspect of being at stage 4,and missing 1,2,3 were scary, I’d never had a pain or ache or felt ill in any way,ate healthily, did exercise, if it wasnt for a sudden sharp pain in my armpit one night that i immediately rubbed i wouldn’t of still found the lump. My consultant said my bloods were good,spleen,liver,kidneys functioning normally,and he said we will hold off treatment to such a time when its beneficial,also adding it was treatable but incurable presently because its a relatively new one. Strong chem and stem cell transplant will be harsh and doing it now would mean it would eventually come back faster and stronger next time,giving me probably 5yrs with as his expression was " damping it down. I went home in a daze,but over the weeks and mths that followed i filled my life with my hobbies, we went to New York last yr while i could, we’ve retaken our vows in June, i want to make lots of happy memories for my husband to remember,its not about me,i think positively and remain a warrior, we have tough times ahead but we’ll face each day as it comes,my tip is to put everything in imaginary boxes,you have a ct scan ,its done,move on to the next one,it certainly all in all has clarified what is important and what is not,i used to worry about every single thing,now they seem trivial in comparison. Im always here to chat,and I’ll always answer what i can. X
Hi,id like some help from people with mantel cell lymphoma, my first consultant says lymphoma is painless. The last 3mths it is becoming increasingly uncomfortable with aching groins,throbbing in my neck,and fatigue,mum thinks what my old consultant says is gospel and doesn’t believe that it is. Its starting to upset me now,my pain threshold is high but continually throughout most days gets depressing.
Hi @NewYork2011. I am sorry to hear about your diagnosis, but my experience is with Hodgkins Lymphoma. I don’t know whether you have had a look on the Bloodwise site to see if there is any information about Mantle Cell Lymphoma that is of help? I think most of us suffer from fatigue, but don’t know how your blood cancer affects the body as regards pain. I would however suggest that maybe you should return to your consultant, and if you still are not happy, maybe you ask for a 2nd opinion. We have to remember that consultants are human, and another person may have a different way to treat you. Wishing you all the best
I am so sorry to hear what you’re going through Becky - and that you’re struggling with pain too. Please do go back to the consultant or ask for a second opinion and see someone new if you don’t feel 100% comfortable with your current doctor. While they are experts in their medical field, they aren’t experts in you and if you’re experiencing worsening pain and symptoms I would absolutely encourage you to make an appointment, and keep a record of the changes you’ve been noticing. If nothing else, you deserve to have good analgesia to help you manage your pain. Take care, Dawn
Hi Dawn,my pain has slowly been increasing especially the last 3mths,ive had no treatment yet,been on watch and wait for 30 mths now. Im seeing my consultant tomorrow, he’s very good. Long story cut short my old and first consultant was rude and dismissive of everything, no bedside manner,he upset my mum and i left ,my husband paid for a private consultant who was very thorough and he said he’d take me on the nhs. The continual aching both sides of my groin is making me feel down,same every day. I keep positive and upbeat i work with special educational children’s needs children, which i find so rewarding, I’ll continue to carry on as long as i can,although the fatigue is tremendous.
Hi, just wanted to say that I hope your new consultant finds some way for you to alleviate the pain.
@NewYork2011 Rebecca I am amazed that you are still managing to keep working with SEN children. Teaching can be so rewarding , but also exhausting. I hope that you are getting help needed where you work, and perhaps there is someone who can help you plan rest periods into your timetable?
Unfortunately I have 30 mins lunch only in a 8 or 10 hr shift. But i remain determined to carry on as long as i can.xx
Oh wow Becky what a challenging and I hope rewarding job? I can’t imagine doing such an intense job while also living with lymphoma and the pain & fatigue. You are so much stronger than you realise! Did it go well with your consultant?
Got to have another pet scan soon. I went round to reception afterwards to get my next appointment in 3mths(11th dec),none,(18th dec)none,next one 8th January, which is after im supposed to have one,so they’ve put me on the floating system with the Secretary,my friend is a nurse she said ring my nurse in 2 weeks to chase them up! I need to know the appointment before i have the scan which is supposed to be 3 weeks before. I feel im in limbo land presently.
I can imagine, it sounds like a limbo! I really hope you manage to sort it out soon. Take lots of care, is the pain any better?
It comes and goes depending on what ive been doing,activity,how far ive walked. If i go out for a day or away for a weekend its worse. My motto is one day out…3 day payback. But it doesn’t stop me, since diagnosis ive been to NY,retaken my vows,been to 3 shows,started writing a book. This weekend im seeing Michael Buble ,and going to Ireland in Oct. Live for today,tomorrow will take care of its self.xx
It sounds quite challenging for you, but I am pleased to hear you have been to New York, renewed your vows, and even been to 3 shows. Do you have any advice for some people who are going through something similar with their lymphoma?
In the beginning you feel,uneasy,your stage 4,but they are not going to treat you,these are the most difficult mths to endure,im very lucky to have good family and friends who filled all my time. My hobbies are and important part in focusing my mind on the here and now. By the second appointment id had another ct scan and they said its indolent. Ive never be a why me person, im fit,normal weight,eat healthy, lymphoma doesn’t choose particular people its as random as the weather. Ive always been bullied from school, through to work,pre cancer my only word it seemed was Sorry…now im stronger, im not rude but i will answer back and stand u for myself. Keep positive, joi the lymphoma association they are brilliant, i was allocated a phone buddy,she helped me tremendously. Now im enjoying life more than i ever had. Yes there will be tough times ahead but i think im ready. Just but each thing in an imaginary box for example if you have a pet scan, go for it,when youve left the hospital but the lid on the box,and move on,it helps or you get bogged down,we have to rule it,not have it rule us.
Thank you for sharing your incredible journey with us. It sounds like you are such a positive person and you won’t let anything get you down.
No i dont,being positive helps,nobody can wave a magic wand,it is what it is.Going through my traumatic childhood,has made me stronger. Im here to help anybody who needs support.
Id always be willing to talk at conferences if it just helps one other person cope its worth it.
Thats always good to hear that you are open to telling your story and helping others whenever you can. I also meant to ask, its been about a month since you posted about your pain with lymphoma. How is the pain now?
Good days and bad, i find the longer busier day i have the more i hurt. Been given stronger painkillers but I dont take them unless i really need to. Life goes on.