It has been 15 years since I was diagnosed with a 10cm Intraventricular Meningioma and since I had brain surgery. Here are the things I’ve learnt from my experience. Please note this is all my own opinion; these are the things I’ve learnt from my brain tumour experience and journey. These are not in the exact order as they happened as I’ve had to dig deep for some memories.
Here Are 26 Lessons From A Brain Tumour Survivor
1. Resist the Urge to Google Post-Diagnosis
This is a suggestion to the patient and their loved ones. Searching for “What is a brain tumour” or “Can I die from a brain tumour” straight after your diagnosis will more than likely freak you out.
The thing about the internet is the first page you will be sent to is usually the thing people ask the most. It is entirely understandable, but everyone now has their own personal brain tumour journey. Don’t be swayed by statistics or what you may have heard about somebody else. These are just some of the things I’ve learned from my brain tumour experience.
2. Seek Brain Tumour Charities Online
They have tons of information, and nearly all have online support groups specifically for a brain tumour sufferer, survivor, family or friend. I have one myself called Aunty M Brain Tumours Chat Room.
3. Try to think about how to tell family and friends.
Don’t blurt it out and give them a shock they will never forget. I made that mistake with my best friend. She broke down on the phone while in a supermarket. I soon found another way of telling others what was going on.
4. Friends don’t know what to say to you.
People react to things very differently. To you, it may be second nature to offer support in any way you can. Others will not have a clue how to react and may distance themselves.
I lost a few “friends” in my early journey, and it baffles me as to how they acted but, some people just don’t know how to respond. Although you lose some friends, you will gain new Brain Tumour Buddies. People you would never have met if it wasn’t for this one connection.
An MRI is the best way to see what is going on in your brain, and you may be booked in for a number of scans.
6. MRI Fears
There is one thing that I have never liked, which is having an MRI. I want them because I want to know what is going on in my brain, but I don’t like the process. It can feel very claustrophobic. If you really feel uncomfortable in the MRI, they give you a panic button so that they can get you out. I always ask the radiologist if they can put the radio on through my headphones. More than not, they do it. I usually ask for Heart FM as I know all the words to the songs and hum my way through them.
I can’t guarantee you’ll hear it clearly through the headphones as an MRI can sound a bit like a construction site, but I find I can listen to a part of the song and then hum them till the end. Check out my Top Music Playlist of songs you may not expect to hear in an MRI.
7. Leave the Jewellery at Home.
If you are wearing jewellery or any metal, they will ask you to remove it. You must remove all metal as the MRI is Magnetic Resonance Imaging and nobody wants to have their ear stuck to a magnet because you forgot to take your earrings out. I did see an article once in the news where it really did happen. The best thing is to leave all jewellery at home.
8. Meeting Neurosurgeons
Before you have your surgery, you will meet your Neurosurgeon. They will say all kinds of technical terms, and it may go in one ear and out the other. They will ask you to sign a form that gives your consent for your procedure. FYI Brain Surgeons are amazing! And our own hero’s
9. The surgeons must shave a section of your hair off.
They usually will only shave where the incision is. Your hair will grow back but not on the exact part of the incision which is so thin in the long run, you’ll need a magnifying glass to find it through your hair.
Even ten years on from my surgery, if I touch my scar, it has a strange numb feeling, but if I don’t touch it, I forget it is there. Actually, that is not true. It feels a bit tingly on a very cold day, but again, it does not hurt too much. Our war wound. A reminder, I survived brain surgery.
10. Navigating the Itchy Scar Phase
Right after surgery, the scar can itch a little; definitely tell your doc as they can give you some cream for that.
11. Dealing with Bedsores
I don’t know why I never see things mentioned on any websites on this subject, maybe it was just me. The skin on my bum and the top of my legs were like damp, soggy cloth. I had been in bed for 17 days and laying down had come with an unpleasant surprise. It went away after I was more mobile, but that was gross.
12. Toilet Troubles
Something I was not prepared for either is that I could not have a poo for a week. It is from anaesthesia.
13. Grappling with the Head Drain
When you wake up from surgery, you may have a drain in your head. It will remove fluid that will have built up where a brain tumour was. The drain will sort that out.
14. Jelly Legs
Depending on how long you are in the hospital. Your legs are like boulders. It shouldn’t hurt but, trying to get up the stairs is like being in slow motion. Your legs have no strength.
15. Keep It Dry
It will help to keep your scar dry for the first week or two. Also, a good idea to have somebody with you when you have a shower or bath. You will feel a little light-headed. This was one of the things I’ve learned from my brain tumour experience.
16. Awakening to New Superpowers
You may realise you have some super reflexes you didn’t know you had before. If somebody went anywhere near my head or something came near my head like a fly. I would have fast reflexes to move out of the way like a ninja.
17. The Myth of Staple Removal Pain
Surprisingly, Having your staples removed doesn’t hurt; it just sounds like a sword coming out of a scabbard.
18. Operation Nightmare
You may wake up in your operation, but that is completely normal. They are just checking you are reacting to their voice. Most people will not remember this, but I strangely do, and it was very bizarre. You fall back to sleep and continue having bizarre dreams.
19. Wrestling with Speech Challenges
My surgery incision was on the left side of my head, one of the parts of my brain that was affected was my speech. When I first tried to speak I couldn’t get any words out, I had trouble finding words. When I did say a word, it was nothing to do with the word I was trying to say.
This doesn’t happen to everyone. It depends on where the operation has been done. Your memory will get better over time, and you will more than likely see a speech therapist. I definitely had some excellent Claire-isms. I’d try to say ‘Can I have some Po-po cops’ instead of ‘Can I have some coco pops’. I am still 15 years on calling my shoes my feet. “where are my feet”. I get quietly excited if I can say a word with over 3 syllables in it. Building up vocabulary is always getting better.
20. Memory Issues
My memory was terrible when I came out of surgery. Take a recorder or take somebody with you for all appointments, so you don’t forget the conversation later. If you are taking a recorder (use a Free App), you must tell the doctor you are using it.
21. No Filter
You may find you have no filter and say very inappropriate things. Saying completely inappropriate things may still happen 10 years on, and you can use the ‘I had a brain surgery’ line, but, your filter is more than likely a lot better, and you are just speaking your mind regardless of whether it is inappropriate. I find, if I say something inappropriate, I don’t care but, somebody else, like my mum, will say ‘Sorry, she has no filter after her brain surgery’.
22. Be kind to yourself.
While you try to come to terms with everything. Cry at any opportunity to get the overwhelming feeling out of you. Do it into a pillow quietly or find your best confidante to talk about it. From my own experience, I just shut myself off from the world and reached out to God and to my 2 besties.
23. The Steroid Struggle
Although we are dealing with brain surgery, what we have had from it, is a TBI Traumatic Brain Injury. One of the things people may experience is ‘Anger’. What will then add to that is if you are given STEROIDS. I was put on steroids for only three weeks to help with some bleeding that was still happening in my brain.
The good news is, the steroids worked but I was now an unbearable friend, family member or all-around unbearable person. Just be patient, as this will settle down. Everyone will have to get some leather pants and stay strong while this happens. I won’t lie to you, I have seen marriages end because two people just can’t cope with each other. It is so sad to see, but it does happen. Get some counselling to help you get through this time.
24. Seizing the Freedom Pass
You may be eligible for a Freedom pass in certain cities, depending on the disability you may have post-surgery, I am now partially blind and sadly lost my driving licence because of my lack of vision. You can get a form from the local council. I can’t tell you how beneficial this has been for me financially.
25. The Hidden Gem: Free Medication
If you are on something long-term. The hospital and my GP never told me that. I found out 3 yrs later from my Pharmacist. This way you don’t have to waste your money on prescriptions as I did. Use the money to buy some cookie dough, Ben and Jerry! (This is not for every city. it is worth a check with your GP)
I have found some great buys on my journey. Things that have made life a little easier. Here is my list. CLICK HERE
Also, grab my book on Amazon. It tells you so much more about my journey and what I did and used to help my recovery. My book is A Brain Tumour’s Travel Tale: Cards on the Table, I pooed myself.
Remember, these suggestions are based on your personal experience, and individual experiences may vary. It’s essential for patients to consult with their medical professionals for personalized advice and support throughout their journey.
Other posts you may find helpful: