Am I being selfish?

Hi Anastasia I posted this about two weeks ago

Last night I couldn’t sleep. Exactly two years ago I was diagnosed with NHL,kidney cancer and possible breast cancer all on the same day! My mind went into overdrive. I could sleep, eat or function normally. My usual calm, logical personality was replaced by someone I didn’t know! I was distraught as to how I was going to tell my three grown up sons, cross that I might not live long enough to get my state pension and worried that I might die before my 93 year old mum.Within weeks I had my kidney removed. That was a lucky find because if I hadn’t had the ct scan to stage the lymphoma it would have been a different story. The breast lump was biopsied and was fortunately nothing to worry about. I am still on watch and wait for follicular lymphoma and feeling very well.

signing up to this website was the game changer for me. Thank you to everyone who gave me such support and wise advice especially Mike the Highlander. Also thank you for your virtual hugs.

you are half my age and even with my many years of life I was petrified! No one understands what it means to hear those words - you have cancer unless they have heard them themselves! Have you thought about counselling?

hopefully someone will come along with experience of radiotherapy

Hi Jane, 

Thank you so much for replying. I suppose because I know it could be so much worse I should feel grateful, but instead I feel scared, angry and worried. No two people are going to feel the same I guess are they? It’s individual to the person isn’t it and there’s no right or wrong way to feel. 

You’re right as well, no one can understand unless they’ve experienced something similar or a cancer diagnosis. I’ve found it really helpful looking through this website. 

I was offered counselling but again I felt like I shouldn’t have it because my cancers not that bad, as if I’m taking someone’s place who needs it more than me. 

I hope you are well now? Thank you for replying as well :-) 

Hi Anastasia

 I think the process of going through a cancer diagnosis is similar to accepting a death. Denial, anger, sadness and then acceptance. I have been through all those and now only get anxious around six monthly scan times. I feel really well thank you.

Please think about counselling. I didn’t have it because I too worried about taking it from someone who needed it more but in hindsight it would have helped. I did download a mindfulness app and that helped to switch my brain off when I went to bed 

Hi, Jane has pretty much summed things up, when you get a diagnosis the are stages we all go though and each of us react differently, so don't beat yourself up, do talk about it and by sharing your feelings you may be able to move to the  stage of accepting and dealing with treatment. 

Follicular NHL is mainly treatable so try to tell yourself that and the drugs and options available now are very different to 10 or 15 years ago, so when you are ready learn about your type of lymphoma and see if that helps, we are all hear to listen as the is a high chance one of us will have been where you are or where you may go in the future, at some point in our treatment and experience.

I chose to park up all the negative feels and not let them come into my head as I could not change anything and they would only cause me more angst and grief and to me that seemed a waste of energy, that worked for me and you need to find what works for you to help you cope and to learn to live with your diagnosis.

Hopefully other will post to and share their experiences and how they dealt with their diagnosis.

The final thought is we all worried about treatment and for most of us the thought was worse than the experience, so hopefully once treatment has started you may see things a little different.

Good luck and look after you

John  

Hi Anastasia  and welcome from me but it’s pants (my granddaughters words) that you have been diagnosed with FL, but you have found a safe place to let everything out and where people will listen. understand and not judge you in any way.

Cancer is cancer and there is no way of dressing it up to be anything else, it’s not what we wanted but it’s what we have and it’s what we have to work through and yes in the early days it’s scary, the unknown is scary, not being in control is scary..... but you have already been given Jane’s and John’s thoughts and I can only agree with everything they have said.

Radiotherapy? I have had 3 sets of radiotherapy between September 2013 and October 2015. A total of 45 fractions with the first 5 on my tennis ball tumour on my forehead. Then in June 2014 10 fractions on all my lymph nodes then  in Sep/Oct 2015 30 fractions on my skin.

The treatment work a dream and the only problem I had was a little fatigue. It actually took longer to wait in the waiting room than it took to do most of the treatments.

We all deal with the thought of relapse in our own way. For me it was an integral part of my journey. I was diagnosed in 1999 with a rare Skin Lymphoma “Incurable but treatable but you will never be in remission” I was told.

Years of treatments, years of relapses but September 2016 I was told I was in remission for the first time in 17 years.

What do I tell you this...... there is unbelievable amounts of hope in the blood cancer journey and it’s important to keep that firmly in your mind.

As has been said its always good to talk and the Macmillan Support Services provides lots of information, support or just a listing ear. The service is open every day 8am to 8pm and it's free to call on 0808 808 00 00 have a look by Clicking here for more information. Give them a call, you won’t regret it.

We around to help you navigate this journey, keep posting as this actually helps a lot.

Hi Anastasia.

This is indeed a safe place for expressing difficult issues and counselling is a great help when it all looks negative and grim.   Sometimes it's hard being cheerful for family and friends, but nobody with any type of cancer wants to scare them and sometimes you need to offload.  That's why counsellors are there and it's a great help to be able to chat about the details here.

The idea of being lucky is daft, really.  Lucky would be not having anything wrong.  But we all know shit happens and in terms of cancer, this kind is less frightening because it can be treated and remission is a great feeling.   

I know that sense of panic.  When I was beginning that process of diagnosis, I thought I had a true bone cancer in a very awkward place and was in a flat spin for about 48 hours, practically planning the whole exit process.  I didn't dare tell anyone how I was feeling at that point, not even my husband.  I almost kissed my orthopaedic surgeon when he told me it was lymphoma, but he had to practically shout it at me to make me believe it!   After that, I went away and read and read and realised I could cope.  Then I could talk, in a careful way to my circle of friends and family.  I haven't told my sister, but she has mental health problems, so doesn't need it.

The fact is that lymphoma is generally treatable.  Individual experiences vary, but most of us get chemo, maybe radiotherapy.  It's very effective, although they can't yet promise it's permanent.  We can expect to live out our lifespans, statistically speaking.   It's a nuisance having poor immunity in a pandemic, but otherwise it's just life with some hospital appointments in your diary.

I do hope you have an easy treatment course and that you can find that point when you too know you can cope!

Cecren

Hi anastasia  it is difficult for any of us to take  in  our news but your in safe hands  here  amazing and very helpful  all the best carl aka clecker 

Thank you :-) xx 

Thank you Mike :-) being on here is really helping, everyone’s being kind and what they’re saying makes sense. 

Anastasia 

Thank you Carl :-) xxx