Afternoon all.
I hope this finds you in good form.
I was diagnosed with stage 3 Large Cell Anaplastic Lymphoma in May 2023. As all of you know, life changes in that point in time and space. Diagnosis took months to come and the road to it was extremely uncomfortable. At points I felt very "un heard" and was even told that it could all be in my head and that it was easy to become obsessed with certain areas of the body. After finally being admitted to hospital, a simple biopsy and then being referred to the relevant department, it all got very serious and very professional and before I knew it I was in for the first cycle of chemo within 10 days of diagnosis.
I went into remission in October of 2023. Although this was a massive relief, our 2 daughters and my wife had been through watching me dying and then recover. Thankfully they are built of stern stuff and with the help of counselling they all seem to be in good form. Or as good as they can be. We speak very openly about that year and always have, even during the worst of it. I went back to work in December 2023, and I admit that this was against the consultants advice, but the mortgage didn't go away with the cancer and I just carried on as normal, faded back into my (kind of) introverted self, which is fine. The spotlight did not feel good. The last 2 years have been different. Chemo has taken its toll and the mental and physical fatigue that has built over 2024 & 25 have got the better of me and I have been signed off work for a couple of weeks to rest.
I feel like I have unfinished business. It feels like only now that I am starting to feel fear about what happened. I thought I was doing ok, but maybe, as my wife has said, I have just pushed on, and didn't deal with anything. I am now exploring how to deal with trauma. This is very new to me.
I'm not sure how long these posts should be so apologies if this is inappropriate in any way.
I would be very interested to hear if anyone else has experienced a delayed emotional response and if you felt or feel in some way guilty or invalid for it.
Thanks you for taking the time to read this.
Kind Regards
Dave
Hi Dave and warm welcome to the Macmillan Community and sorry to read about your journey to date.
I am Mike and I help out around our Lymphoma groups.
I don’t have Anaplastic large cell lymphoma (ALCL) but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ my be different I most definitely appreciate the challenges of this journey rather well.
As there are over 60 types and sub-types of Lymphoma so we can’t have a group for every type but you may want to join our…….
General Non Hodgkin's Lymphoma
……. support group.
This group is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
To connect in with the group please click on the link above……. then once the group page opens you will see a [Black - Click to Join - Banner] at the bottom of the page, click in this box and this will then confirm that you have joined the group.
You can then introduce yourself to the group by putting up your very own post by clicking [+ Create new post] or [+] in the top right of the group page.
You can copy and paste the text from this post into your new post.
Having had over 25 years of treatments and only achieving partial remission, the longest being 9 months over my first 14 years…….. I was thankful achieved full metabolic remission in September 2016…… and I remain in remission to this day.
As a family we faced this head on, open honest discussions were often had…… especially when things became challenging and complicated (See my story)
Delayed emotional response and if you felt or feel in some way guilty or invalid for it……. Let’s face it you have been through a tough time….. but there is no room for feeling guilty or invalid.
My wife and 2 daughters were clear that my journey was not going to define us…….. we defined how we live……. Even although my incurable CTCL is asleep at the moment, but this has been put on a high shelf so I am not regularly looking at it.
I had some very challenging treatment including 2 Allograft (donor) Stem Cell Transplants……. We reflect back to this dark days, but this unwanted journey has made me into a better person…… living in the moment and enjoying life.
I will keep an eye open for you in the group and we can continue this discussion more.
