Hi everyone , last year I was diagnosed with Aggressive diffused large B cell lymphoma , Non Hodgkin’s lymphoma which turned out to be Burkitt’s lymphoma , is there anyone else on here with this diagnoses , not to compare as we’re all different , but just wanted to see if there was anyone else that went through similar , my chemo was RCODOX & M/IVAC 4 cycles 2 of each the RCODOX was the worst , that cycle lasted 13 days almost 24/7 , was worst than hard going , but I found inner strength to do it…
Morning @Jay. I have low grade NHL but I’m sure there will be somebody on here who can share their experiences. It sounds as though you have had a really tough journey. How are you doing now? X
Morning Nichola ,
Being honest I’m having more bad than good days at the moment , stuck between 2 worlds , my past & present , I know I have a long journey ahead of me in my recovery but I feel as though I’m doing it myself & so alone , my boys got covid so I haven’t seen them for weeks although I talk to them on the phone , just wished I had more people around me , instead , it’s me , sorry for my rant but I don’t know how to pull myself together
Never apologise for a rant. It’s good to get it all off your chest. It can be really daunting thinking about the journey ahead of you, especially if you feel so alone? Have you given the support line a call or considered counselling? I know it’s not for everybody but it really helped me. Sometimes, just a chat can make things feel a little lighter and that’s what the support line is for. You’re never on your own on here X
Hi @Jay this perhaps is the one place for you to be able to say how it feels to be you.
@Nichola75 has given you some good suggestions.
It must be so hard to be without your boys.
Isolation is really tough isn’t it.
You now have your forum family around you, I find it so supportive. We seem to just understand each other.
I have found that I cannot just ‘pull myself together’ it is a process.
I find music, walking in nature, reading, some TV programmes and films, perhaps a hobby can help me.
How are your boys now? Is there any chance of seeing them sometime?
We are here for you and I look forward to hearing more from you and about you.
Look after yourself and be kind to yourself
Evening Erica ,
Thank you for your support and kind words , as you said this is my family , a family that truly understands what I’ve went or possibly what I’ve went through , just hate it so much when people have/say their opinion and it really hurts me , I’m not a fraud , if I have to go out I hide behind my makeup , makeup does wonders , just not for your confidence , I’ve also put that much weight on , gp says I’ve to think of getting better and my weight can wait , nothing fits me , I’ve went from 10-12 to 16-18 , 1 bug jump , I’ve not got the money to go out and buy a new wardrobe ,
Boys are coming along ok , Andrew got out of Isolation This morning , Gary was yesterday , but I feel with my immune system I need another week before I see them again , make sure they’re ok and I will be also , going for my 2nd booster on Thursday .
I went last night to the ladies craft group but no-one turned up , felt let down but came home and put the tv on before going to bed.Today I received my MP3 player today from the Beatson cancer hospital in Glasgow , it’s got relaxation music on it , I fell asleep 1.30 till 4pm it was still playing away… for me I need someone to go through my diagnoses and treatment to affects on my body , my journey till now… Tomorrow I’m going to my computer course so hopefully learn how to use my laptop Xx
Yes, @Jay we sure are here for you and I know the feeling of putting on the make up or in my case the smile. It is what is really behind our masks that we can share on here and feel understood.
I have realised that people have opinions or try and fix us as it makes them feel better (but of course really upsets us !!!) and it just makes me laugh to myself inside.
I have this very slow healing wound and hole in my head after a 2nd skin cancer op last Oct and people keep saying ‘they must be able to skin graft over it’ or ‘why don’t they do this or that’ and it just goes over my head now, ha !! ha!!.
Great that your boys are coming on OK and good that you are having your 2nd booster on Thur, I am having mine on the 25th.
Great news that you received your MP3 player from the Beaston and that it has relaxation music on it.
You must have felt upset when nobody turned up to the craft club last night.
Good luck on your computer course, I often think that is what I need.
Look after yourself.
Afternoon Nichola , Just finished my computer lessons , doing spread sheets , let’s hope I pick it up , Feeling much better today , last night I was invited out for a meal , was great getting out and being in company , so think that helped me , after my computer course I met my cousin and went for a chat & cuppa , just waiting outside the chemist as my meds are going in dosset boxes, make it easier for me , then home as my back is niggling me , how’s your week going ? Xx
That’s a shame that nobody turned up. Hope the computer course went ok today? Good to know the boys are out of isolation to x
@Jay I am impressed with you learning to do spread sheets, I find them really difficult, my husband has a spread sheet for everything !!!
Brilliant to hear your socialising news, I can tell how it boosts you.
Yes, my back really niggles me too when I overdo it or sit for too long, but socialising outweighs the niggling sometimes !!!
Good Morning Jay
I am so very sorry to hear that you are going through a low point but that seems to be the nature of the beast. I think also the news is so depressing both at home and abroad that it does add to the trial of trying to pick ourselves up. I am glad that the boys are through covid (at least they have had it now) and it sounds as if you are doing all the right things about going out, meeting people and doing things. I totally agree with Erica, now is the time to start living again wherever we can and I know the circumstances are different for us all. I often think back to the early days of my diagnosis when my husband tried to encourage me to walk down the garden to the summerhouse, and oh my goodness what a feat that seemed. But little by little, step by step we get stronger and become more confident. Just look at how far you have come Jay, keep going, enlist all the help and support you possibly can and this time next year, everything crossed, life will look a lot brighter. Love to all x
Hi Pat ,
I’ve just sat through a webinar of Lymphoma - living with lymphoma and side effects ,
I thought it might have given me more , still feel as though I’m still in this hole trying to get out , I’m fighting to keep my eyes open , stubborn me ,
Just wanted to pop on and tell you probably why Im knackered , I had a fab weekend with Gary my youngest son 26yrs old , both my son’s have Cerebral Palsy and additional support needs , I finally got him to come home for the weekend , Largs 1 day for Lunch and an Ice Cream from Nardini’s , we treated ourselves and sat in , Next day run in the car to wherever he wanted then home , Chinky night plus film night then yesterday was a run to Linwood , toy shop and dinner then I dropped him back off , phew , no wonder I can’t keep my eyes open , now Andrew wants to know when’s his turn I need sleep , trying to get myself an action plan made up so I can try and help myself , the new me , the me that’s sore , tired , fatigued , easily upset , cries if the wrong word is said , not being able to do anything , but it ain’t gonna get me , hope I haven’t rambled on to much , talk to you soon Xx
Hi @Jay you certainly did not ramble, it was a jam packed post full of actually managing to have Gary home for the weekend. It sounds as if you did some absolutely lovely things together.
Personally I think there is a difference between choosing to exhaust and/or fatigue yourself doing things you really enjoy and getting exhausted and/or fatiguing yourself through whatever personally stresses you and having to overdo it emotionally, physically or practically.
Be ever so kind to yourself and when you feel better it’s Andrew’s turn !!!
Hi everyone ,
After my busy weekend and yesterday , I had today off ,
I’ve been good all day , no rubbish , Banana on toast ( wholemeal bread ) , peeled and cored apples for my dinner as I never fancied anything , but I knew I had to eat something ,
Now relaxing watching Star Trek , I watch that when I’m missing my boys , It feels as though their here with me…
Tomorrow , computer class , Thursday relaxation with Elaine , done over the phone , apparently if I fall asleep she hangs up on me , let’s hope I don’t snore , then back to the weekend again , have a fab night everyone
I hope the computer class goes well. Let us know! X