Hello
I am new to the forum and also new to this kind of thing. I don't usually share with people other than family and friends.
My journey started in March 2016 with a blood test taken because I was lacking in energy. The doctor on receipt of the results called me in and thought it was an infection. Two days later I received a call from the haematologist at the local hospital. This is where like many other people think, something is not quite right.
I had further tests and I was informed I had hairy cell leukaemia. From then on it was a whirlwind. I was given cladrobine by injection, after the third injection I contracted sepsis and landed in hospital for about three weeks. My wife was told that things where bad and prepare for the worst. But I have a very strong will to live and came through with further treatment.
Then in July 2020 it came back and I was very reluctant in further treatment because of what happened before. Treatment was postponed until mid September 2020.
This time it was pentostatin, one initial injection by canular and three days later I was in an acute care ward fighting for my life, hight temperature sepsis again with Covid with bacterial pneumonia. They wanted to put me on a ventilater but the heamotogist saved me from that.
I came out of hospital in mid December 2020 and it took quite a awhile to recover, after careful research I discovered it ca take up to 12 months to recover from sepsis, Unfortunately they don't inform you of this
I am now in that place where as you can probably discern, I am very reluctant to further treatment although I am vey week at times What the future holds is still being discussed and I have been referred to a local teaching hospital. I don't what treatment will be available.
I am sure there are many people out there concerned of there future with the Covid taking first priority.
As you can tell I am still here with that strong will to live and not give in.
What ever you do hang in to the best of your ability. We are stronger that what we think
Hi and welcome to this corner of the Community although always sorry to see folks joining us. I am Mike Thehighlander and I help out around our blood cancer groups.
I don’t have HCL but was diagnosed way back in 1999 with a rare incurable but treatable type of skin NHL Stage 4a and although my blood cancer ‘type’ is different I have experienced most types of treatments used but not necessarily the exact same drug mix but understand this journey rather well unfortunately. including having Pneumonia x2, Neutropenic Sepsis x2 along with many other challenges.
It’s hard knowing the best thing to do but talking with others who are walking the exact same type of cancer treatment path will help you navigate this challenging time.
The New to Community is like the Community Reception area. As there are many cancer types and experiences, likewise the Community has many dedicated support groups to allow you to connect with others who understand so can I recommend you start by joining our CLL, SLL, HCL group as this will be a good starting point.
Navigating the community will depend on the device you are using. To go to the group just click on the Green link I have created above.
When the group page opens choose [Join]……. A black box with text will also be visible so you can also join by clicking anywhere in the black box.
You can then introduce yourself by putting up a new post by clicking in the box near the top with + New(Computers) or + (Mobile Devices). You will then see a dropdown menu so why not hit ‘Start a Discussion in New here, say hello’
You could just copy and paste the text from this your first post. You can search through existing ‘Discussions’ and click 'reply' if you want to put up a comment.
It’s always good to talk so do call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.
I will keep an eye open for you in the group.
Always around if you need further help in navigating the community.
All the very best.
