Overwhelmed

Hi Spring2021 and welcome to this corner of the Community.

I have another one of the 60+ types of Lymphoma (CTCL).

My one is a low grade diagnosed back in 1999 and told “Incurable, treatable but would never be in remission.....” but zoom forward to Sep 2016 I was told remission for the first time in 17 years..... it’s a long story - have a look at my profile by hitting my name.

My journey was long, complicated, changed directions lots of times, multiple relapses but remission for me is a massive result.

But a high grade type like your DBLCL the treatments used make this type seen as indeed curable......yes treatment may be hard work but do-able.

The information tends to come thick and fast and unfortunately communications can be suspect at times but you do need to keep pushing g your team so that you understand and are kept in the loop.

Some of the group members will be along to talk about their journey as my one is rather different.

But happy to talk more and help if I can.

Hi,  thank you for your prompt response.  

Your ‘life’ story is inspirational.  

Sounds like you had a good medical team who continued to pull out all of the stops. 

Thanks for your support.

I guess it’s take each day as it comes.

x

At times it was taking each minute at a time.... but I reflect back to 1999 when I was first diagnosed. I had a few friends diagnosed at the same time with Kidney cancer, Parkinson’s and MS.

Now I am in remission and living a good life..... the friend with the Kidney cancer is years gone and the two others have deteriorated with no light visible whatsoever - it is all about prospective and how we control the battle between our ears ((hugs))

Hi Spring2021

I posted the following elsewhere on the site earlier but thought I would copy it over to this thread as it may be of a little help to you 

At the start of my investigations it was thought I had a much more serious cancer with much more radical treatment and not a great prognosis and it it did come as a bit of a relief when it was found to be NHL. Not a huge relief but a step on the way to getting the noise in my head under control. It took me to after cycle two to get there. I think it's partly because you have so much to take in and can only deal with so much at once.

Started my chemo a year ago yesterday 1/4/2020. Its doable and is now becoming just something else that's happened in life.

Personal we decided that we would let our friends and family know about it and that turned out to be the correct move for me. There was a significant number of friends of friends that have been through NHL in the past and are still doing fine years after.

A year on feeling fine. I was out on the hills today and fitness may not be quite back to 100% but it's not far off. If someone had been able to tell me when I was going through the investigations  that I would be feeling like this 12 months on I'm not sure I would have believed them.

As Mike says getting things sorted in your head is a big step on the road. Once you know the type, the treatment and get that started things will start to become manageable. 

Hi,  

Thank you for re-sharing your post. 

I am pleased to hear you are doing so well.

I’m not a very patient person and I am used to being the one in control of my life.  So going with the flow is the scariest bit.

January was all about getting fit this year.  Diet and Couch to 5K and I was in such a great place.

February was a month of pain and no sleep and all manner of drugs for the pain which probably played a part on my mental fitness.

Then Chemo on the last day of March. It’s definitely mind over matter with me.  I just need to find my brain again, which has been lost in this roller coaster of Q1.

I hope I can be inspiring to others, like you, this time next year.

x

Good morning Spring2021, it’s a bright morning up in the Highlands and as we have moved from ‘stay at home’ to ‘stay local’ we will venture a little further today..... before the snow comes tomorrow

“I’m not a very patient person and I am used to being the one in control of my life.  So going with the flow is the scariest bit”

These words in your reply to Garfeilds caught my attention. You will quickly get to understand that control and having to be patient takes on a completely new dimension when you embark on a Lymphoma journey.

Information is key and getting clear answers is important but this is often challenging at the best of times not even allowing for COVID times.

Early on in my when my journey started a wise friend who was also on a cancer journey said keep a note book Mike.... I now have a few filled with dates, times, names, contact phone numbers, email addresses...... and all the questions I ever asked at appointments and when in hospital - along with the questions were all the answers I received. The note books are also a daily diary of my journey with my symptoms, challenges, thoughts, observations....... but in the later years the goals I set myself to navigate the post treatment world.... I had a long recuperation so goals were very important for me.

I often flick through the 21+ years and reflect on the milestones that are so evident and appreciate that even in the most challenging times we were able to navigate a positive way forward - have as good a Saturday as you can.

Hi,

Thank you.  I think writing things down will help.  Especially if I ever get good news at any of the stages.  I have a tendency to dwell on the ‘but’. 

I think my cat is already bored of my drama so would perhaps prefer me to write it down!

Sounds like you are going to have a good day out and about. Enjoy.

x

HI Spring2021.  I am just going through a similar experience.  I was diagnosed with Diffuse B cell lymphoma in my rectum (why there God only knows)  in October 2020.  I thought I was tough and resilient too, but this disease is a B*****d, which unfortunately impacts so many people.  I had just retired and had lots of plans (COVID aside) so I was angry, tearful, fearful and everything in between.  I felt very cheated particularly as I went through a similar experience in 1997 for a different lymphoma.  It is OK not to feel OK on some days. I once was in floods of tears just cleaning the fridge out as it just seemed all too much.  And its OK too if you want some space away from people.  It is a bit of a cliché but take each day as it comes and do not be afraid to ask for help.  I have had 4 rounds of RCHOP which went well and has reduced the tumour significantly and now I am halfway through radiotherapy to mop up the residual disease. .  The aim is a cure which I take heart in.  The cancer itself has caused another medical complication which may require surgery and I have just accepted that this is life until such time its all over.  I try to achieve something positive each day, whether its finishing a book or jigsaw puzzle, clearing out a drawer, baking a cake or managing a walk.  I hope the treatment goes well for you. 

Hi,

Thank you for getting in touch.  It sounds like you are on the right path, with hopefully not too much longer to go before your retirement plans can begin in earnest.

Focusing the mind on something simple is clearly the way to start. At the moment I am just worrying about having to be a working adult type person again on Tuesday.

I’m working from home still due to COVID but the past year has been hard living and working from home, even when I had other life stuff happening.  So being here with work and emotions is going to require some mindset.

It’s only a FTC, due to redundancy last year, so I’ll feel bad if I can’t complete it.  I should be grateful that money is not a major issue. One less struggle both practically and mentally which I must be thankful for.

My neighbour has just been round to discuss the hedge! It’s something we’ve been discussing for a while. I just kept thinking, what’s the point, Will I even be here to care by the end of the Summer. So the mental state definitely needs some work.

I have to find your strength which I hope will come with time.

Thanks again.

Hi Spring2021.... I remember the initial months getting past the “it’s cancer - I need to get all my affairs in order”.

As I was diagnosed before Dr Google and the availability of good information I had to continuously interrogated my consultants so I understood that I was not dying any day soon..... went on to see both daughters graduate, get married, have 4 granddaughters and start very successful business.

After coming through the challenges back in late 2013 to 2016 my Specialist Nurse is now looking forward to me sending her photos of great grandchildren at some point in time..... it’s all about how we choose to focus the way ahead..... day by day.