Hello to anybody out there who takes the time to read this! I am feeling so low and seem to be crying all the time. I am trying to be positive and realise how lucky I am compared to others but I've been through such a lot over the years(I could write a book) and just when I thought things were getting better I was diagnosed with a meningioma(after bumping my head)...that was in 2012. I was very lucky it was found as I hadn't had any obvious signs....I had been very unwell for quite a while and did think something was very wrong but put it down to stress and kept thinking I had severe sinus problems! Anyway I had the tumour removed asap...within 3 weeks as it was rather large! I made a great recovery but inside I knew I wasn't the same person at all. I had never suffered headaches before my op but I do now. I also feel as tho my eyes are trying to burst out of my head, my ears feel like they will blow off and my vision although ok is very weird sometimes. Nobody can see the things wrong in me as I look exactly the same as before my op but I struggle along trying to keep up with tasks the same as I did before. To cut a long story short, I have been told that my tumour has started to grow again and I am scheduled for one shot radiotherapy in a few weeks time. I am terrified and can't think about it without crying...silly I know as many of you poor souls have been through so much more but I am so concerned that my quality of life will be even worse after it. I don't go out much as it is because I feel bombarded and get anxious if I am in groups now and everyone is talking, plus I just don't have the energy. I have told my nearest and dearest about how I feel but they can't see me as any different to what I was...I feel sooo different and I get tired so easily. My husband is amazing, he is such a support to me. I am so grateful for being alive and the fact that the tumour was discovered but I am not feeling as positive about my future as I was when I had to get my brain surgery. I have had my mask made ready for radiotherapy and I'm not usually a coward about medical things but this seems to be overwhelming me...that and the fact I will be alone for almost 6 weeks after treatment, (my husband will be in a different country) I'm scared of having seizures and what if I can't get out to the shop for food, or I don't have the energy to cook if I'm so ill....etc etc. I'm at my wits end. I found this page today and well here I am pouring my heart out.... Do I rent a place for myself to stay in after treatment (as I'm having it done away from home)and just hope I'm ok, or do I book into a hotel...as at least there will be help in an emergency...it's all proving too much for me now...I'm scared and worried about everything. The pressure behind my eyes is so sore and my head feels like mush! Many thanks for listening. xx
Struggling to keep to keep it together... - Headway
Struggling to keep to keep it together...
big hugs! my hubby had a the same,tumor at the front of his head the size of a fist! this is why you need regular scans after the op,i know to find out its growing back is a setback,at least this time they can zap it! try to stay as postaive as you can,to get through.tell youre nuro team about youre symptoms,i hope everything goes well
Thanks so much for replying. I'm trying so hard to stay positive but it seems to be catching up with me at the moment, usually I am very positive and brave...must be going through a blip. Really appreciate the hug as it does get very lonely at times. All the best to you and your husband! x
pleasure and yup the whole postaive thing caught up with me at times too! ride the blip and get back on track
I'm amazed that you've even mentioned the word 'coward'. You sound like a really brave lady to me, Peaches. Is there no one who can be with you whilst your partner is away ?
Be assured that you can come here at any time for support/companionship and as many hugs as you might need.
Best wishes and hugs, Cat xx
yay! "mummy" cat! enjoy youre sunday
I'm still grinning from that wacky remark Razy ! You're looking very upbeat today. 
Hope you're on an upwards trajectory !
Oh, and I'm having a lovely, lazy Sunday...........................thank you !! xxx
iam upbeat today,and heres hoping for more upwards stuff,stay lazy!x
xx
Thank you for your kind words. No there isn't anyone as I'll be away from home...but I'll do it...one way or another!
Great to know I can come on here if things get too much.
Feeling more positive already just reading your comments!
Thanks so much!
xx
Ok my dear...................we can be your family for as long as it takes for you to feel strong again.
Which hospital are you attending, and is it the same one where you had your op ? xx
Thanks again. No I will be in Edinburgh for the radiotherapy. xx
? Royal Jnfirmary.......if so I know it. My Dad used to lived in Galashiels and I know all round that way, from visiting,.
if yes to ERI, I'll know where to send my thoughts across the Ether all the way from France, Shirleyx
Hi peaches, so glad you found us here, sorry I didn't see your post earlier to reply, but stick with us, remote support is better than no support, if you don't forget to look like I do often 
It's always a good morale booster - best medicin - and they're a great bunch on here. Wishing you well for the next treatment.
A virtual hug for you, from Shirley xx
Hello Peaches
What a lot to deal with! It's this period of waiting for treatment that can be the most trying. Have you thought of contacting headway 0808 8002244?
They may be able to suggest alternatives to getting a hotel perhaps recommend a live in carer/nurse for your post therapy 6 weeks.
It may sound daft but doing as much as you can now as Malaltete has done may help you deal with the waiting and ease your mind in the process.
Sending you lots of love and as many great big bear hugs as you can handle
Xoxoxoxoxoooooxoxoxooooooooooooo
Thanks for your reply, means a lot. The waiting is v hard, lots of different emotions and thoughts running through my head! I will give Headway a call, that sounds like a plan. I am just trying to think of all options to make it easier and to help aid recovery as obv being alone after treatment is not the best and the thought of it is causing me lots of distress. One minute I think I can handle it then the next I'm terrified that something might happen and I'm on my own, etc etc. Life throws some mighty tough things your way sometimes but you pick yourself up and dust yourself down as best you can...only this time it's feeling so much more difficult than usual. xx
Peaches please don't try to cover all the options. Especially on your own it is so easy to find yourself spiralling down the rabbit hole.
Lovenhugs
Xoxoxoxoxoxooxoxoxoxoo
Hi Peaches
You say what happened to you is not serious compared to others. Well if it effects you it IS serious.
It is hard and tiring to explain to others when they cant see a problem.
Others have given great advice. Never think what you are going through is not important. It is hard to come to terms with the changes but it can be done.
All the best Pax x
Yes you're right, it is serious, very! But there are others so much worse. Each and everyone of us has their own journey to travel and it is upsetting not being as able as before but looking so well. Unless people have experience and a real understanding of how tumours can affect you they don't and can't be expected to see your struggles....I don't try to explain now, it's soul destroying and can come across as feeling sorry for yourself. So we soldier on and keep going!
Thanks for your reply.
xx
I know what you mean. I had a bi some years ago and appear fine and well.
I dont explain anymore I just let them discover my problems.
I am fed up with "but you look fine". Like this is something I dont know.
I had thought of having "bi survivor" tattooed on my forehead. Then again why should I make it easy for others , they rarely make it eady for me.
All the best Pax X
Hi.
You are "Very Welcome" just ask as much as you want we have all got the T-Shirt. We will offer as much "Support as you Need" come and "Join us"
You are Very Welcome.
Steve.
Hi Peaches, I can only reiterate what everyone else has said. Any head injury leaves invisible but serious difficulties from what I have seen. I tend to be a problem solver so when my husband had an SAH I spent a lot of time reading and researching and planning what I would need to do. With this in mind may I suggest you inform your consultant that there will not be anyone at home for 6 weeks after your operation, they may be able to find a solution, daily visits from care workers, or possibly a stay at a community hospital. Medical staff often assume that family will be at home to look after you and if planning this in advance will help you then they may be able to help. I agree Headway would also be a great organisation to call, they are great with their support.
Hang in there, you are going through a lot at the moment as do many on this site. I am just a spouse and family carer but I see so many people getting so much support from here. Good luck. Xx
Hi peaches. We all have our own journeys and they are individual to us. My heart goes out to you qnd you have loads of support here. As said above give headway a call they may be able to help. Remember you are not alone...xx
Hi Peaches,
My injury all started in 1996. I was diagnosed with astrocytoma (benign brain tumor) which was also causing hydrocephalus so I have a shunt for that.
I was diagnosed with a cyst in 98. The cyst is equivalent to a tumour and I had radiotherapy on that.
I have experienced complications with both tumours and have further ops in the past.
My main problem right now is my shunt as it can malfunction at any given time really and if it malfunctions then I have to spend time in hospital... Again.
I have also been through a heck of a lot over the years. You could say I have been dragged through the hedge, even the meat grinder, many times but have still come out in relatively pristine condition :).
I am trying to avoid having to visit my GP and hospital when I can now.
If I were you, I would try to consume as much fruit and veg as I could... If you can keep it down at all.
I keep myself much more hydrated now and touch wood, I have not had any problems since 2010.
I am coming to the end of my local Headway's cognitive course at the moment and even they have mentioned that hydration is not only good for the body but good at keeping the shunt in working order too.
Turmeric is an amazing spice for the body. I bought myself a small jar of ground turmeric. I put a little in a cup and add hot water. Or I might add a little to a smoothie. Homemade smoothie of course, never shop bought.
I even read up about essential oils not long ago and how they are very good for the body and mind, especially Frankincense. I have now got a 5ml bottle of Frankincese that I use for inhaling only, it shouldn't go directly onto the skin. If you ever decide to get Frankincense or any other essential oil, make sure it is 100% THERAPEUTIC GRADE ESSENTIAL OIL.
I got the oil Saturday and I had a few deep breaths of it and the next day I felt more awake than usual, besides having a really good sleep as well.
Usually my eyes can feel quite tired, irritable and dry and I sometimes put eye drops in my eyes, natural eye drops of course.
But after the Frankincense I feel more alert and my eyes feel so clear. Not dry, not irritable.
Apparently, Frankincense essential oils oxygenates the brain which is essential for brain injury.
I definitely reccommend essential oil and remember to eat your greens :).
Fruit and veg are very good for the body also. Ya mum never told you to eat your greens for nothing you know :).
Take care,
MJ
Thanks so much everyone for your very kind replies! I am in a better frame of mind today (after crying my eyes out yet again last night)and have decided to take things one step at a time and not look at this as my future(I know it is but I will deal will things as they happen and not think about all the what if's) as I get so down and my mind runs away with negativity. I will try and keep my chin up and go ahead with the treatment as best I can. As lonely as it will be, if I'm able...ifff...I will try to get out for a while each day, even if I just walk to the shop or cafe and have a coffee. (I'll just have to do a real life facebook....run up to folk and tell them what I had for breakfast, how I feel, what colour of knickers I'm wearing etc)!! 
Just pray I'm able to do that and if I'm not then I'll just have to order food online....where's there's a will there's a way....I won't stick unless I am extremely ill!!! Believe me! Plus I will try to keep my head in a good place as much as I can. Your comments have meant millions to me. I take my hat off(well when my hair grows back) to you all! Thanks again. Much love xx
I can imagine a real life Facebook actually, people running up to their friends saying "I had bacon and eggs for breakfast and I am wearing a pink thong". I would be thinking "Who cares!".
I remember the early days of Facebook when I first joined, all I could really do was throw a sheep at my friends... an imaginary sheep of course.
But imagine if Facebook was reality and you could do those kind of things now.
Walk into Costa coffee where you plan to meet a friend and you have a sheep over your shoulder.
Every one would be staring at you.
I just had a homemade smoothie. A blend of a chopped banana, a chopped pear, 5 dates and grated lemon with a some milk and natural yogurt.
Natural is the way to go.
I used to have the juice of a lemon but that is such a waste of lemon doing that so now what I do is freeze my lemon.
Once frozen, I grate it. You get all the goodness from the peel as well as the fruit and juices so you are not wasting it. And the taste is a little more intense too :).
Hang on to that great humour you have Peaches ; it can be a lifesaver.
Your comments about real-life Facebook are priceless ! xx
I haven't been on for a few days as I have been busy organising myself a new abode for my time away for my treatment.....what a scary and expensive time this is proving to be. Rents in Edinburgh do not come cheap but needs must and after lots of tears and feeling sorry for myself as I'll be alone, I have finally chosen a place to put my head down while I recuperate. I will have a week with my husband in Edinburgh after my treatment and then three weeks alone. Then I will move on to a little town near my daughter so she can pop in and out. I will be there two weeks. I thought it would break the boredom up a little for me and give me something to look forward to. Three weeks alone sounds better than six! Then I can think only two weeks to go and I can maybeeee get home.....can't beat your own bed, especially at a time like this! Anyway hopefully I will be a lot more settled now things are booked, paid and it's all organised! Lots of love to you all today.
xx
x
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