Getting Tired of this

Literally!

So, last post was waiting for the 4 week break in August, as that has come and gone I shall update you.

So at the last meeting I was told I had a 4 week break and will be switching from 140mg Temozolomide to 280mg and was told to ring the support number if you feel down and need help, to which I replied why? I was advised that some patients miss the attention from coming to hospital every day and being looked after. I said I’m sure I’ll be fine, I’ve managed this far with no support.

The first treatment was to double your dose to see how your body copes, you are given a blood test which I assume checks red and white blood cells along with other stuff to make sure organs are ok. Rather than every day, the treatment is now 5 days on 23 days off. As my body was coping fine, for the 2nd month the dose was upped again to 360mg 5 days on and 23 days off.

I am currently on this dose until Christmas Eve and then a scan 6 weeks after that.

Some good news though, through the 2nd month my hair started growing back and hair anywhere else is falling out. Now while it is starting to grow back it has come back softer than before and with more grey so be prepared for that.

The odd thing about all this treatment is as the Doctor said, I actually miss having the radiotherapy!!

Throughout this whole process the treatment is starting to take it’s toll on me, tiredness, nausia and lack of energy are the biggest but take it slow and eat small meals is the way forward.

In the space of 2 months…

This was the worse side

The better side

Thats it for now so best of luck everyone.

Radiotherapy Part 2

As I stated in the previous blog I would post progress, well here it is. Considering I have had Radiotherapy and Chemotherapy together for 6 weeks I have done very well. Not too sure what is like with other treatments but with mine it was Radiotherapy 5 days a week and then a meeting with a Radiologist, Chemotherapy the same but taken every day and a meeting a week later.

Apart from slight side effects I have not had any side effects worth mentioning to require further medication, these are….

• Slight headaches.
• A little tinnitus. (consultant claims he’s not heard of this but I have checked with patients and it is true)
• Unsettled stomach after eating my normal size meals. (so kept them small and snacked)
• Slight tiredness about 3hrs after radio. (being out all day or shopping for a few hours requires a nice rest when I got home)
• The most frequent scary bit in patients, hair loss.

Decided not to hide it, I don’t care and if people don’t like it, then simply don’t look! So around the 3rd week I woke up one day had a shower and it started falling out (odd as no hair on pillow). Anyway, shaved it as I have dark hair and it sticks out more…

Ayup Patch !

Own It

So as the weeks went past I lost more hair but even after 6 weeks of radio and chemo I still have patchy hair left. May shave it off but not sure yet, have 4 weeks off from treatment and start strong chemo on 1st August. As you can probably tell I am not a vain manand have kind of been expecting this for 9 years.

Final Treatment Right

Final Treatment Left

Final Treatment Top

So I’m done until 1st August and decided to come away from the hospital with a present…

For now, best of luck everyone, will continue with blogs after 1st cycle of strong chemo.

Radiotherapy

While it has been posted on facebook page Life With Brian and the brain tumour charity I forgot to post it here. So here is me actually having radiotherapy, not as bad as I thought.

One foot in the grave!

No not the show lol, well the time has come where one foot is in the grave and the other will follow based on my treatment success or failure.

Yes that’s right, the grade 2 is now grade 3 😦 and the worst part is in the last 9yrs I’ve done nothing to make the most of it. Plodded on as normal getting wrapped up in small things and taking life for granted, no point feeling sorry for myself, what is done is done and gone.

They have advised me it is early stages and only a few mm in size but it still don’t change how you feel hearing grade 3 or the word cancer. For years I’ve been able to shrug things but this time it seems different maybe it’s because I’ve been advised I could have as little as 2yrs without treatment or a good chance of 5yrs+ with treatment.

Treatment – a good word to use instead of radio and chemo and in my case treatment will be 6 weeks of both combined then the radio will stop, a 4 week break and then 6 months of chemo.

Providing everything is okay, treatment starts on the 24th of this month, as before like with the brain surgery I will be documenting everything so anyone who reads my site will see what I have gone through instead of lies, myths and misinformation.

I won’t lie, I am more nervous about the treatment more than having brain surgery again! I am guessing brain surgery is the last option if radio and chemo don’t stop it growing.

For those of you reading this who have been given more years to live, live it and don’t waste it! I’ve been stupid. Next post will be shortly after the 24th about the build up to the first session and what I went through.

Writing a Story

Information offered and advice needed, as you can see by my first page I have written an ebook and a paperback book for those who want to read in hand not on screen. Pricing seems to be an issue on Amazon as if you set the price to the lowest, you make something like 1p per book.
I tried another website called Lulu Books, this one seems far better, there pricing management is better and you can make more money selling your story. Why not try it? I think it is beneficial to get your story out there, see people like it and get feedback from customers. Everyone’s story/journey is different so while there are many out there people are always interested to hear so why not get it out there.

Share your story as a carer, one the reason my wife gave for our breakup was she felt like a carer, so much “in sickness and in health” vows.

Just to make it clear, although it helps I am not doing it for the money, 50% of profits will go to cancer charities.

The quality of both books are very good but I do prefer Lulu as it just feels better.

Anyone reading this done the same? had same issue with Amazon KDP?

Belated Merry Christmas

Appears I missed wishing all a very merry Christmas to all whether you can celebrate it or not. As you can see by my post I am still kicking around, nothing much to report other than not had my December scan so no doubt it will be in Jan now, interested to see the result this time as things have not been feeling right but that may be stress.

One thing I would like to mention is that recently I was asked how I managed to cope with my prognosis. This question was asked by someone who read this website and found I am one of the very few who talk about it. This was the same for me when I was looking for information, I have still yet to find out exactly how someone dies from a brain tumour, maybe I will leave that to the consultant when the time comes.

Anyway for now, hope you had a merry Christmas and are able to celebrate the new year with hope and positivity.

All the best.

Milestone Update

As previously mentioned in the other post, I have reached a milestone of 5yrs, a bit late in posting this one as 23rd July was my cranniversary, 5yrs post op and had a few beers to celebrate. Everthing seems to be ok at the moment, still on my own so who do you turn to when you need support?

Had a few problems emotionally lately so wondering if it is just the marriage breakup or do Keppra and Lamotrigine actually mess with them, seems my emotions are stronger and flick between happiness and sadness easily. Anyone else having this? My tumour is on motor strip so can’t be that.

Another question I got is can seizures wipe memories, specialist nurses say not but I remember a lot when I was younger but short term is all over the place.

 

Anyway, all the best everyone, keep strong and fight on. x

I’m still hanging in here!

I heard you sigh!

Thought I’d better raise one’s head before you think I’m dead. I think last post was about marriage failure and contributing factors. Personally I think the tablets and surgery has changed me slightly. GP and epilepsy specialists think not. Due to my situation/torture I went to the GP about the stress I was going through, all sorts of up and down feelings, panic attacks, aggression and the feeling of wanting a quick way out. They refered me to a therapist.

Yes I’ve said it! THERAPIST

It needn’t be a taboo word, whether or not you have a brain tumour or related to or friends with someone who has one. We all suffer mental health issues at some point in our lives. I don’t think rasing awareness does much because there are so many things that could fall in to the category of mental health. I clearly thought I was being brave and coping well but infact was being wore down by it all and i can see it now.

Anyway, was let go after a few sessions (probably thought “can’t deal with this nutter”). Having moved out of the family home and living on my own I feel better for it and the therapist helped through this period (I won’t go in to full details as you would think I made it up, even the therapist was slightly shocked and amazed at the same time lol), sounds strange doesn’t it. I’ll tell you why, the type of stress at home with a failed marriage infront of kids is different one from living on your own with access to your kids; where both parties are not under eachothers feet making the situation worse.

Transport is an issue as my wife was the “taxi”.

If you live in the UK it might be good to speak to your council office to see if you are eligible for a free bus pass, I am because of the epilepsy (if you live in Derbyshire it is called a gold card and it is not just for pensioners). It has now given me a little freedom, never bothered with it before as I was with my wife and she had the family car.

Christmas coming soon, I’ll stick another post up soon.

Medication Update

Friday 18th Sept 2015, had a consultation regarding medication. Nothing exciting or too interesting.  Still having seizures on average of every two weeks is too much apparently, the meds are obviously not working as desired regardless.  1000mg a day is a small dose so my Keppra has now been increased to 750mg in evening and 500mg in the morning for two weeks and then 750mg both morning and evening to see if that settles them. This has to be done slowly because it takes about a week for any changes to settle in your system.  Either way I am starting to rattle as I walk now 😉

So the myth of missing a dose causes seizures can be settled now 🙂

Wednesday 25th November 2015, Keppra incresed last month to 750mg morning and 500 evening and then 2 weeks later 750mg both morning and evening. Seems to be no change and getting minor seizures around every 10 days. Will be seeing the nurse at the local GP, don’t know why as I am under consultants for reviews.

On the 21/8/16 my Keppra was increased to 2,000mg a day and as this hadn’t helped much it was increased to 2500mg per day. I’m getting no side effects but feel this had no real effect on me.

It was decided that I should increase my Lamotrigine to 450mg a day and on 02/07/17 this was completed (as you know it has to be increased slowly). This has had a slight effect of reducing the length of the seizure and a minor changed in strength of the seizure. It was discussed that I may have to be put on another tablet.

Been a while since updating this, today (17/12/18) I am still on 1250mg keppra twice daily but Lamotrigine has chnaged to 250mg twice daily, nothing has changed seizure wise but maybe thats stress at this particular time, they don’t want to introduce another tablet because I “Tolerate these well”. Love that terminology!

Cruelty of side effects

For four years now I have been on Keppra and Lamictal both slowly increased to… Keppra 1250mg morning and evening, Lamictal 250 morning and evening. My belief is that the side effects of these have contributed to the end of my marriage, many reasons were given for the failure without telling me I was changing (shame as married couples should talk), so here are some of the reasons…

• Agitation or restless
• Problems sleeping
• Panic attacks
• Aggression, anger or violence
• Depression
• Anxiety
• Personality change
• suicidal thoughts

Looking back now I see I had experienced all of them which was hurting her however, it should have been talked about so I could get help, change tablets, seek counselling or something.

So some advice for all of you out there, if you think you may be experiencing these side effects speak to your partner and see if they have noticed a change in you before it’s too late like my failure to notice, speak to your doctor or specialist nurse. After speaking to numerous people about this drug they say it’s evil and shouldn’t be used and I now agree. No doubt surgery has some blame too.

I would point out that I never physically hurt anyone but I guess emotions are stronger than physical pain.