Hi
I’m 5 months in remission after fighting stage 4 Hodgkin lymphoma
with one round of radiotherapy and 6 rounds of chemotherapy
I’m a dad of 3 children a 8 year old son , 6 year old daughter and 1 year old son
while getting diagnosed my wife to be give birth to our baby boy and while I was going through my last round of chemotherapy I lost my dad my best friend due to heart attack
im just struggling to move an except everything that happened of the last year and even tho I’m in remission I feel the worst I’ve felt thought this year when I should be getting on with my life and I just don’t know how to or even know how to put in to words to anyone what I’m feeling
I’ve been having panic moments when I can feel my heart racing and the tiredness over the last few weeks seem to be getting worse
im hoping I can just speak to someone who as gone though what I’ve gone through and come out on the other side
Hi MikeD94 and a warm welcome to this little corner of the Community.
I am Mike and I help out around our various Lymphoma groups.
I don’t have Hodgkin's Lymphoma but I have been on my Lymphoma journey for over 25.5 years first diagnosed way back in 1999 at 44…… with a rare, incurable (8 in a million) Low-Grade Non Hodgkins Lymphoma (NHL) Cutaneous T-Cell…… a type of skin NHL.
Our daughters were 14 and 18 at the time.
I continued to work for 12 years in a demanding teaching job on an full timetable and yes had various skin treatments over these first 14 years as at times my skin was 70-80% covered with tumours…… and although the treatment was positive I was only ever in partial - remission with the longest being 9 months before I went back on treatment.
Then in late 2013 a second, also rare (4 in a million) very aggressive fast growing High-Grade - Peripheral T-Cell NHL came along taking me to stage 4a.
This triggered 2 years of some intensive treatment between late 2013 to late 2015….. 800hrs of chemo, 45 zaps of radiotherapy and 2 Allograft (donor) Stem Cell Transplants (SCT)…… The first SCT was June 2014… I was told it had failed on Christmas Eve 2014…. so I had my second SCT in Oct 2015
Eventually on 19 Sep 2016……. 332 days after my second SCT I was told I was in Full Metabolic Remission with No Evident Disease….. the first time in over 17 years……. well that was a day to celebrate.
Over these 25+ years we have went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters….. I turned 70 a few Nov and I am coming up to 10 years since my last treatment.
Yes our families unwanted journey was not what we would have chosen…… But we are a family who look for the positives in everything.
Yes I/we have navigated some of the same issues you have described…… especially back in late 2013 when we were told that the treatment plan that had been put in place was my last roll of the dice and it it did not work I had 2-3 years on the clock.
Over the years (See my full story) I have had to deal with significant skin issues, pain and the challenges of having visible tumours on my face.
The SCTs were very challenging…. especially the second where so evens up in critical care due to hear issues….. I was bed bound for most of the 4 weeks in the SCT unit so left the unit in a wheelchair…. I was not eating, had to have physiotherapy for 4 months to get me walking again….. the fatigue and pain lasted a good 2 years but as a family we still looked at this as a temporary bump in the road.
Controlling the noise between the ears is important and developing a prospective of appreciating the availability of some very effective treatments that are available for people living with Lymphoma.
Over the past 8ish years helping out on this large Community I am ever so thankful that although my cancers were rare and hard to treat……. unlike many people I have chatted with on this community…… I am still alive and living a great life and as a family we continue to look forward to what else life has in store for us to enjoy…….. this can be done.
So although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.
I have one very simple question - apart from coming on here and unpacking.. well done for doing this….. who else have you talked this all through with?…..
I look forward to chatting more.
