Help me live with my glioma

Please Take few minutes to read my story…

From a normal polish immigrant living in Scotland to a 35 year old tumour fighter.

I came to Scotland in June 2007,from day one I worked for a coffin manufacturing company until the day I was diagnosed with brain tumour on 11th of august 2022.

I loved my job and always treated it as a service to people. I Never said no, I always wanted to help our customers.

It has been my passion and only Job, I have worked there for 15 years and now unfortunately due to company rules and being signed off work sick, I am only entitled to statutory sick pay of £99.35 per week for 26 weeks in total.

Since the end of December 2021, I started experiencing change of taste (sour taste) and strange (metallic) smell I could never trace.

I’ve visited my GP and was prescribed two different anti acid medication, of course which didn’t work, now I know I was having aura seizures. (These are controlled mini seizures with sounds fading away,blurred vision ,sudden anxiety fears and as above changes in taste and smell) however being originally treated for gastro reflux resulted in me having a tonic clonic seizure on July 29th 2022 which then led to the finding of a brain tumour at a large size of 7.5 x 5.5 x 5cm in the right frontal temporal region.

(It is hard to say when it started growing, I have no family history of brain tumours, but oncologist told me first symptom could’ve been back in 2013 when I experienced partial loss of sight in my left eye, again I was seen by a specialist back then and was told it could be retinal migraine)

In last two or three years, I had noticed along with people around me noticed changes in my personality, I was anxious, depressed(even was on anti anxiety/depression medication) I also left my family, had anger issues and unfortunately started abusing alcohol to fight what I thought back then my inner evil. The led to me loosing my driving license but that according to doctors is also another symptom of my tumour...personality change.

I could go on and on and on. It really wasn’t the best time of my life.

After the neurosurgeons and oncologist had a board meeting, the decision was made - brain surgery: right frontal craniotomy and debulking of presumed low grade glioma as much as possible. Unfortunately 1/3 of its original size grew into brain vessels what could led to stroke, further seizures and risk of life.

Before surgery I was told that it’s not curable but can be treated and controlled with operation followed by radiotherapy and chemotherapy.

Neurosurgeons were happy and told me it was a success and they managed to take out 2/3rd of tumour without damaging me, thankfully I can walk, talk and remember everything pre surgery.

After the surgery and biopsy was done, The neurosurgeon told me that she had better news than she expected (probably she thought my tumour could’ve been higher grade which means I could had brain cancer) however my diagnosis is::

Astrocytoma(glioma) grade 2 IDH1 mutant ATRX mutant

As noted above it is not curable but a treatment plan was presented to me. Either I do nothing with regular MRI scans but since there’s still 1/3 of it left in my brian I am going to undertake :

Radiotherapy(started on 11th of October 2022, 5 times a week for in total of 28 sessions for now) followed by a starter of 4 cycles of PCV chemotherapy, I am aware there will be short term side effects of both treatments. Such as nausea, hair loss and long term side effects with the possibility of memory problems.

My treatment unfortunately isn’t in city where I live but 22 miles away and I’ll be there daily. This is not easy and for first two weeks, I will have to pay drivers from my own money as my free patient transport didn't start until 21st of October.

I like to be straightforward and thankfully so is my oncologist, she told me it’s only to control your tumour as it’s more than likely to comeback and it could as a higher grade(brain cancer) in years to come. For now I take each days as they come now, I appreciate being able to open eyes every morning or fall asleep not being anxious.

So what I am asking for is support. I urgently need help financially as I’m going through my illness, as noted above I’m only on statutory sick pay and still awaiting to be granted social benefits as universal tax credit and adult disability payment.

As we know in Scotland NHS treatment and prescribtions are free of charge but unfortunately life isn’t. I don’t know how much my monthly income will be once I am granted benefits, plus I have two sons I’d like to support as well. I’ve started seeing a private oncologist therapist of 24 years experience to help me out getting through my illness/treatment. She has helped a lot of people with similar problems. Plus I’ll be looking into some alternative way of treatment(Rso cannabis oils)alongside my current treatment.

On 4th of October I had another clonic seizure lasting 10 minutes, in the street. By standers helped me when I was unconscious and phoned for an ambulance, which was supposedly on its way… once I regained consciousness I alerted people to phone ambulance again and give my CHI hospital number and told them that I’m 6 weeks into brain surgery recovery and pre radiotherapy treatment. The Ambulance did not arrive, luckily a friend walked past and gave me a lift to A&E. When I’m in a seizure for 5 minutes or longer it’s a risk of life, this time I was 10 minutes unconscious and in total lying for 40 minute’s on a pavement. Unfortunately my seizures can also be triggered by stress , this experience has made me not want to leave my flat due to my anxiety in case something happens to me again and ambulance will not come or will be too late.

My parents have come over from Poland to be with me as can’t be on my own, my mother had to leave work in Germany to help me.

I’ve started working with private polish oncology therapist specialist from Germany. This costs me around £900 per month, plus food and diet supplements which are very important in my situation.

I can provide all invoices,diagnosis, doctors opinions if required.

To put it simply, I want to live as long as I can especially for my children. Unfortunately I can not afford it on my own and as already advised, I still don’t know what my monthly budget will be once finally granted social benefits however I know it will not meet what my current bills are.

For now my only income is statutory sick pay.

I am kindly asking you to support me through my illness, what else can I ask for.