Thread by @QueensOfJannah1

My cancer story - 2019

This is tough for me but I want to explain what I went through, especially before I was even diagnosed with cancer, so that you don’t ignore the signs or allow anyone to fob you off.

Here goes....

*deep breath*

Bismillah......

At the start of 2019 I started feeling very lethargic, I put this down to being anaemic . Had blood tests done & they confirmed that I was very low on iron & prescribed iron tablets.
They didn’t make a difference, I began to feel weaker & nauseous...

The smell of food made me feel like throwing up.
I then started getting sharp pains in my chest
It got so bad I thought I was having a heart attack
The ambulance came
My heart rate was at 150
It’s usually around 67 BPM

They did an ECG & said I needed to go to A&E
Had more tests done there
Long story short
Not a heart attack
They thought It was stress & sent me home....

At home I had a fitbit, so I could see that my heart rate wasn’t dropping.
The chest pain was still there too
Nothing I did helped ease the pain & the nausea got worse
Less than a week later I was back in A&E

Had more blood tests and they said I needed a blood & an iron transfusion.
I was wheeled into the resuscitation room & had 2 units of blood & 1 of iron.
I was told that the pain in my chest was because my heart was having to work harder because I was so anaemic

The next day they discharged me & told me to come back in a week for another iron infusion & that the chest pain should get better as my iron levels improved.
They also referred me to the gynaecologist as they thought that was the reason of my anaemia.

I returned home
I didn’t improve
I got worse
The nausea got worse
I started vomiting several times a day
Whatever little I ate tasted metallic, bland, disgusting
I didn’t want to go back to the hospital because I felt like a Nuisance...

The chest pains increased
I started vomiting blood,
I collapsed
The ambulance took me back to the hospital, had another ECG
my heart rate was still high
I was still vomiting
Within 5 days of my last visit I needed another blood & iron transfusion

I was admitted at the #NorthernGeneralHospital in #sheffield
Dr booked me in for a gastroscopy to see why I was vomiting blood.
They mentioned it could be because of an ulcer.
Meanwhile I still kept vomiting blood...

While I was having tests & waiting for the results, my condition got worse
I got severe sepsis
Drs said I wasn’t going to make it through the night
I was then referred to the palliative care team to make me ‘comfortable.’
They hooked me up to a syringe driver to control the pain

My family kicked up a fuss & the dr in charge called her colleague at the Hallamshire hospital oncology ward & they then decided to transfer me as they both seemed to think it could be cancer & not an ulcer from my symptoms...

I got put on another intravenous antibiotic drip to try & clear the sepsis,
I had quite a few gastroscopies & biopsies because they couldn’t see clearly because of blockage down my throat.
Not a pleasant experience at all

When the results finally came back the dr said I had aggressive B cell lymphoma (blood cancer)
3rd stage cancer
It had effected my stomach,
My liver,
And also my bowels

From first being told that my chest pains were because of stress, to then being told it was because I’m anaemic, & then that I may have an ulcer that’s causing me to vomit blood, to mild lymphoma & Finally aggressive lymphoma
I was numb.

The Drs had to decide whether to give me curative Treatment or to just let the palliative care team keep me ‘comfortable’
I had never been so scared in my life

The following day my fever had dropped slightly & I slowly pulled through & the sepsis was under control
The oncologist said I was say fighter & that they would do everything they could to help me beat the cancer

Alhamdulillah (Thank Allah)

I was to have aggressive chemo with steroids every 3 weeks to treat the aggressive lymphoma
I had a little hope, but then the oncologist said that they weren’t sure if it was going to work until I had enough sessions to see if my cancer was shrinking with the treatment.

I was admitted in the royal Hallamshire hospital, I had to be kept in my own room because of risk of infection, & because I was so poorly I had to stay there for several months.

Each day was hard
Every day I had a cocktail of pain relief & other meds, orally, via the drip, via the syringe driver, via jabs in my belly.
I felt like a pin cushion
They’d take blood to test
every. Single. Day.

My veins started to collapse & they couldn’t take blood so I had to have a piccline inserted into my arm towards my heart so that they could administer my meds and the chemo.
All was well until my left arm started aching & got swollen. they scanned me
& found 3 blood clots.

They had to inject me with warfarin daily, to thin my blood, & I had to have my picc line removed just in case the clots got dislodged and I end up having a heart attack.
Once this was sorted I got an infection again & it was touch & go again.
Got put back on antibiotics

The next few days, weeks, months, got harder & harder
I was in severe pain
Morphine started giving me side effects so they changed & tweaked my meds
I was on anti-sickness meds too as I was still nauseous front when cancer & now the chemo.

Just before my 2nd lot of chemo I was told that the 1st session had reduced the cancer & they were confident that it was working to reduce it but I still had a long way to go

After the 2nd session of chemo my hair fell out
it was shaved smooth so that I didn’t have to wake to find clumps of my locks on my pillow
my body got so frail that I couldn’t turn in bed without assistance
I couldn’t dress
I couldn’t go to the loo (had a catheter) or do anything

The more chemo I had the more I suffered, The sickness got worse, my memory suffered, I got depressed, I had the most terrible nightmares, couldn’t sleep, but at the same time I was drowsy because of the heavy meds. My finger & toe nails turned black, I lost weight.

My oncologist always smiled whenever he visited & said, “every side effect that could happen, happened, everything that could possibly go wrong, did. Yet here you are not giving up! You’re a tough cookie, I’m going to help you through this!”

Loads more scary episodes happened but I’ll be here forever, but towards the end of my last chemo session I was really weak, the chemo messed me up so much I was feeling suicidal (astaghfirullah)

I was crying, feeling so low, & this nurse cane into my room. She took my obs & realised I wasn’t in a good state & stayed with me all night just talking to me about anything & everything (God bless her)

The next day the oncologist cane over & said that they weren’t going to give me anymore chemo as the benefit would outweigh the good, basically I would die from it, he said I wouldn’t make it through if I had another session...

I thought things would get better but they didn’t. I was already hadly eating but things got worse, whatever little I ate, I vomited. Nothing would stay down. So I had another scan.

I was told that the cancer had scarred my stomach & closed off parts of it & that’s why my food wasn’t going anywhere.
I was then nil by mouth.

Had a tube put down my nose (which was soooooo painful & uncomfortable the whole time it was there)
I was told I needed a bypass surgery to cut out the part of my stomach that was scarred & reattach it to the small intestine so that food would pass normally again

I was transferred back to the northern general hospital for the bypass surgery but had to wait a month from the last chemo session before they could operate.

A couple of days before the surgery I started getting chest pains again, really severe & felt like I was having a heart attack, I couldn’t even reach the buzzer to call for help but fortunately a nurse saw me & called the cardiologist

The cardiologist came, took my obs & said my heart rate was 250
I had an ECG
He went away & came back with a team & everyone was stood around my bed & said
I had Supraventricular tachycardia (SVT) a condition where your heart suddenly beats much faster than normal

He said he was going to inject me with something that would slow my heart right down but I would get this feeling of impending doom
I told him that as long as he doesn’t stop it he could go ahead.
He laughed & said he’d try his best.

My heart was fluttering & racing 1 minute & then it gradually slowed down & I felt like I was sinking but then my heart rate was normal again alhamdulillah

I was monitored to see if I had anymore episodes, otherwise they would have to postpone my surgery.
I wanted to get it over with, I hadn’t eaten for over a month, just had fluids via drip, I felt terrible, & if the surgery was postponed then I would have to have a feeding tube.

On the day of the surgery I was nervous, I was afraid, I was scared I wouldn’t wake up from the surgery.
They said it would be about 3 hours.
I didn’t come around til 9 hours later
Doc said they got worried when I didn’t wake up but alhamdulillah I pulled through

The 1st 3 days after surgery were not so bad as I was drugged up more than usual
They showed me the incision, 6” scar above my belly button.
Then on the 4th day I got an infection, a fever, I started panicking, felt claustrophobic, like the room was closing in on me

a doc on call that night treated me, & slowly the fever died down over the next couple of days

It was hard to cough, painful to laugh, or move from the surgery, I was in agony, but relieved at the same time that it was done, I was told that I had to wait another week before I could drink anything & then a few days after that soft food, & then slowly introduce solids

I was sent home about a month after the surgery
Still unable to walk, still weak, still in pain but the nausea was slowly going after almost a year of it I was slowly feeling less sick

A couple of months later I was told I was in remission alhamdulillah
But had to be checked every two months because it was blood cancer & it could come back, but for now it was gone

It’s been tough
I still get panic attacks
can’t sleep with the lights off
still get nightmares
still weak, my bones ache, there are days I can’t move or get out of bed, & I have to watch everything I eat, it has to be fresh otherwise I vomit, food I used to eat b4 I have gone off

It’s been a long journey, At times I thought I wasn’t going to make it, I didn’t even tell my mum anything that happened whilst I was admitted because I knew she would worry more than she already was

I’m grateful the docs didn’t give up on me, & I’m so grateful God helped me through this, if it wasn’t for my faith I don’t think I would have coped like I did, it was the most frightening time of my life, this time last year I didn’t think I’d make it.

I also want to thank everyone who reached out to me during this time. People who I knew online
people who interacted with me, even those who didn’t before this happened, I was overwhelmed with the support, & prayers, it meant a lot, it really did. you’re all in my heart & prayers

Everyone’s cancer story is different, their treatment is different, their side effects, symptoms, ailments are all different, it’s not one size fits all, don’t let anyone tell you otherwise, some people have it harder, some don’t, some take longer to heal physically & mentally

Another thing I noticed but may have forgotten to mention before I got diagnosed is that my taste buds were off
couldn’t stand the smell of food
things tasted metallic & for a foodie like me that was bad!
This lasted a year
I couldn’t enjoy food at all
but it’s slowly coming back