Basically this is the same as my profile but i just wanted to share my experience with you all and if there is anyone out there that is suffering even when in remission i will be here for you...
(Non Hodgkins Lymphoma)
Hi everyone I am a 39 yr old single mum to a beautiful daughter of 16 from Essex .. This is a long bio as ive typed it from the heart due to recent clinical depression i have returned to this site to see if i can help others so i have entered as much detail as i could possibly remember.........but it is in "detail" and some not a very nice read but it is what happened...
2 years ago I had felt unwell for weeks and after i started vomiting every day for no reason i decided to go to A+E with my daughter, they gave me a chest scan and took a blood test and said everything was fine!!!!!!.......
I knew something was wrong when i kept getting bad pains in my shoulder blade and my eye kept swelling up,
after many visits to my GP who said i was just having a "muscular spasm" and sent me off with ibuprofen!!
a week later i was in so much pain my mum sent me back to the doctors and i saw a "locum" who was very worried about my blood pressure i was finally referred to AMU as my blood pressure was so high,
They basically saved my life they saw something was wrong then from a chest scan and blood test found a lump infront
of my heart and after more tests found one by my kidneys and liver, plus
my kidneys had more or less failed!!
I was so upset laying in the hospital bed with my daughter by my side learning that they have found all these
problems and yet a week earlier A+E sent me home saying i was fine :/
After having the biopsy on my chest a week later i was shocked to discover i had 3 tumours which were all cancerous.
Straight away i had the regular 6 x R-Chop chemotherapy which didn't improve things much, so i then had to be
admitted to hospital for 2 weeks for R-ICE chemotheraqpy which is stronger, after many scans and tests the tumours
from my liver and kidneys shrunk.
The team at my hospital then decided i should be referred to London to have a stem cell harvest / transplant which is basically........
You go on a machine for about 5 hours that takes out your blood and spins it to catch all your stem cells, then
puts your blood back in then they freeze your stem cells, then you have a weeks worth of very high dosage
Chemotherapy called "Beam", then they put back your stem cells after.
Well i had this treatment last may and in Euston London they put you up in a local hotel,
which was really nice so basicly me and my daughter stayed in the hotel for a whole week whilst i had to pop over
the clinic for a 2-3 hour chemo session every day then we could go and browse round euston, i started to get a bit
tired but i stayed strong for my girl and took her up oxford street for a bit of shopping it totally exhausted me
but was so lovely because it was sunny and we enjoyed each others company, at the end of the week my daughter had to
be picked up by a friend to go home back to school and the Beam chemo was starting to kick in,
i finally gave in my independance of the hotel and took myself and my case over to the clinic to be admitted to hospital for the
"Aftermath"....................
My brave daughter came back up on her own through the tube system from southend for that day i was admitted and the
minute i went into the hospital i was terrified i knew now that i was going to get very ill, the London University Hospital is very nice and clean but scaringly clinical...... we went in a lift up 16 floors "Gulp" was shown a room to go and sit in which would be my "Room" for the next 4-5 weeks......... well i basically sat on the bed and cried
it was horrible, far far to clinical pure white echoey and the big glass window showed a view of oil rigs and cranes
i just cried my heart out, my daughter said come on mum it wont be for long but i knew it would be a struggle......
After staying with me for for 2 nights on the "polystyrene settee" bless her! she had to go home back to school so
there i was laying on this bed feeling not too bad having a male and female doctor come in saying ....
"Basically you will be tied to a drip 24/7 for the next 4-5 weeks"
and as i am a smoker i was like "oh crap" :) but trust me i got
so ill i forgot all about puffing on a ciggy,
within the next two days i was awoken in the night with the bed covered in diareoaha .. trust me i woke up thinking
what the hell??? .... and the embarrasment of having to press the nurse buzzer to come change my bed while i
showered... that went on for about 4-5 nights, then the chemo really hit hard....
You have a "Tract" in your body that goes from your neck to your anus and the chemo basically screwed it up twisted
it around and added spikes to it, i couldnt smell, taste swallow or anything i really thought i was dying, i took a
small sip of orange juice and i was screamed thinking i was having a heart attack it was that painful they ended up
putting me on a paracetamol and morphine drip, and a an anti biotic drip they said if i get worse i will have to go
into intensive care but i thought no way im gonna fight this bastard i am not going in there !!!!
they put a breathing gas mask on me that i had to keep on for 24/7 and it was awful most of the time i put it on my
head when they werent looking :)
After a very painfully lonely 5 weeks in this room i finaly got the go ahead to go home !!!!!!!!!!!
I was excited but scared i couldnt walk due to the chemo so had to be wheeled to an ambulance taxi outside ahhhh
fresh air!!!! and had a lovely jamaican taxi driver all the way from london to southend so was a pleasant
journey, to see trees again and cars and people was so weird but nice, finally got home hugged my mum and daughter
who were waiting and hit my bed for the next 6 months !!!!!!!!!!!!!
This is where i am at 10 months later i still hurt, i ache everywhere doing household chores is so challenging i hardly ever go out
unless i really have to food shopping etc and then it hit me the depression!!!!!!!!!
My mum stayed with me for a
few weeks but we both started arguing all the time and i have been through so much stress worrying about my daughter and her gcse's coming up and her prom and everything my mum has recently decided to go back home on a horrible note and has hurt me so deeply,
i have recently turned to drink to ease my pain and panic attacks which really help but i know long term is not a good idea the doctors put me on Citalopram anti-depressants but after 3 months they have not worked and after a traumatic weekend of tears and disorientation my friend took me to hospital and my doctors who have now put me on Fluoxetine which are supposed to be the new "prozac"
so i am praying they will work soon im on my 3rd day..
Once you have been treated and sent back into society that is when you need the most care and support i feel now i
have nothing apart from one close friend that lives locally she has been there for me from day one she is great she listens to me and doesnt judge its the only thing keeping me going at the moment.
I just hope someone out there is going through this with me i would love to hear from you,
or if there are any questions you want answered about the whole stem cell / bone marrow transplant & chemo please feel free to ask me whatever you want i pop on here almost every day so will reply as soon as i get your messages,
peace and love and hope to you all
Kat
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