The Roy Castle Lung Cancer Foundation
3,152 members1,791 posts

So Tired, Tired of waiting, tired of waiting for

Have had CT scan & MRI brain scan. Sheesh that was like down town Beirut on a Saturday night. That was done as emergency & I managed to enveigle them to do both in the same day. Ibviously hadn't occured to anybody that this was possible, but it was & I did...results!! Not that it made much difference as I now have to wait for a month while the lung & the brain guys see if it is worth operating in my brain. If the lung cancer has spread then they won't bother. That's what I heard. This has been the worst time so far. When I heard 'Brain surgery' I thought oh no! Not going there. Can't say hospital where very reassuring either. Told that it was a big thing & they wouldn't consider if any spread to liver, or elsewhere from lungs. My alternative doctor told me that Gamma knife us not such a big deal & is very successful so I should go for it if offered. In the meanwhile I have been taking lowest dose if steroids, which have helped with symptoms. I can now get my legs in correct orbits of onesie without tripping myself up & falling on floor. The bruises are disappearing from bouncing off door jambs & I am no longer a danger in the supermarket with my shopping trolley. Lots crockery has been smashed in kitchen, but was fed up with it all anyway. Maybe I should go for plastic. Have no cut lowest dose of steroid in half & supPlementing with Boswellia which works well. Driving is off the menu & I have started a live affair with my bus pass. Fortunately the bus service where I live is really good & with help from kind friends I have found a new freedom. No worries about parking, speed cameras, police following me. Everything takes longer & you have to plan a bit more-but after 47 years driving, I'm really surprised at the lack of a down side. Bus drivers are really jolly, although they do tend to slam on the brakes a but fast, which I will have to have words with them about. It's like coming back into a world I'd forgotten about. You see so much more when you aren't driving, it's quite an adventure. People talk to you and I do enjoy people watching whilst riding the buses. I make up stories about where they are going and what they are doing. I'm sure they would be horrified if they knew & zi'm probably totally wrong.

I do have a question if anybody would be so kind to share any experience they have had with Gamma knife. It is still worrying me. I have gad my poor little brain for a number of years and we have got used to each other. I do worry if it would cause personality changes or other things I might not even have thought of. Would be grateful for any positive info.

Hope everybody is keeping as well as they can & enjoying each day.




16 Replies

Hi Laura ,

I know nothing about the Gamma knife .But I would just like to say remain calm nothing will happen unless you consent to it and from what I have seen in a work colleague who has had brain surgery recently ,it is not so life changing as you are worrying about ,she has not changed at all and is now back to full time work .If things are spotted early enough 'they can be nipped in the bud '.This cancer thing is more than annoying it has us all permanently anxious .

Your sense of humour is a little like my own ,that's exactly what I do on public transport journeys or anywhere if I am alone in public spaces .Everyone has a story of their own then I get to wandering how many of their stories include this cancer thing ,how many are having treatment and getting on with their lives .It reassures me life is going on no mater what and its there to be enjoyed even in small ways when black thoughts are shadowing me .Humour is good for all of us it helps the days to pass and chases away the negative thoughts cancer brings .

You are brave and I hope someone on this sight can answer your question about the gamma knife and that this will give you clarity ,lets hope you don't need it anyway and that your cancer is behaving itself. Take care and keep making up stories why not start writing a novel based on the bus characters , whilst you awaiting results day ,you may have a best seller on your hands you never know at least it would be a distraction whilst waiting .

Thoughts are with you Diane .


Thanks Dianne, think I missed replying to you, or maybe I did🙊None of my story was spotted early and I was prepared to be a 'good leaver' but there doesn't seem to be any hard & fast rules where cancer is concerned. 12 months ago they gave me 6 to 12 months, but here I am still above ground & everybody says how well I look. Particularly annoyed with GP as if he had let me have a brain scan 10 months ago when I was complaining about headaches, he could have maybe saved me writing off my car & knocking a WPC off her bike and a whole lot of fear, dress & anxiety I really don't know how anybody manages to get an early diagnosis, because my experience tells me that GPs do not know what they are looking for & tend to ignore what their patients tell them. MaybeI've just been very unlucky & looking well has been my downfall. It has nearly earned me a little pine bungalow a couple of times before this. My headstone will have to read 'I told you I was sick'. But not there yet.

I do have a problem taking things seriously, comes from having a scouser for a mother-black thoughts not allowed.

That was my initial feeling. Okay, I've got cancer, but decided that I was going to live with it & not let it take over my life after the initial shock. I've done that for a year, but found that the brain thing didn't fit so easily into my plan-it is getting to be a nuisance now. So many people suffering from it and the projections seem that there will be many more. My dream would be that cancer could be downgraded from the frightening scare story it seems to be currently to something that you just fit into your life. Think this would involve a drastic re-think in treatments though & thems that know thems that know seem committed to the slash, burn & poison methodology, which I was hoping to be able to avoid.

It really does concentrate your thoughts and I know I now appreciate so many things that I've taken for granted over the years. Little things really that I perhaps never even noticed much.The beauty of the sunsets where I live. The sea, the sky with clouds making pictures. The collection o.f crickets in my front door & path. What & why have they appeared suddenly?

I have heard of many people who have had successful brain surgery, but it has just been this long wait that has got to me. Never mind only another 4 days to go then I will know. Actually, even if they didn't do anything I would have a good excuse for being totally eccentric 'Well I've got a brain tumour you know,' wonder if that would stand up in court. Hahaha!!

Best Wishes



Laura. I am so sorry that you are having to face these issues. I can tell you have a really quit wit and express yourself well. You should write a book. My husband has finished 4 of 6 treatment of chemo. Tolerating well except for joint pain and fatigue. doing everything I can to help and pray each night it does not spread to his brain. I wish you strength. Dorcas.


Thank you Dorcas. It was what I really didn't want, like all of it, but we all just have to do the best with what gets thrown at us. Hope your husband does well after the chemo. I keep asking myself if I've got time to write the book. I suppose I never will if I don't start😊

Best Wishes




Hi Laura

I had lung cancer, had it removed but later a little cancer snuck out and up to the brain. I had stereotactic surgery and was made a lovely mask which I took home. The small tumours got zapped as they were small and the larger one was operated and removed. I'm feeling great and awaiting another MRI to see if it all worked with the stereo.

Hoggy x


Hi Hoggy

What's stereotactic surgery? That's a new word I haven't heard. Pleased to hear it has worked out well for you. Think how you feel is main indicator. Trouble for me is that they have classified my lung cancer as incurable, so don't know if they will want to bother with my brain.

Think it's all the open ended questions that are wearing me down & having to wait so long to find out is the worst.

Thanks for taking the time to reply. & best wishes for MRI




Hope this gets you there.

Good Luck Rab.

Will also check up on your suggestions..


Thanks for that Rabbie. Doesn't sound too dreadful. However, something else that won't be for me. Appointment today with oncologists for yay or nay. Friend insisted on coming with for support. However, I saw GP yesterday & hospital had written to him saying that I not suitable for surgery. Was a bit ambivalent about that news anyway, but GP really stuck the boot in & said that he thought it was time to contact the hospice. Can't tell you what that did to me-actually nearly a bottle of gins worth. Told GP I had no intention of shuffling off yet & he back peddled somewhat. What the deck is the matter with these people? Talk about abandon hope all yea who enter here & make sure that you are alone when they give you the bad news. I know I'm tough, but I have my limits. Do a bit of a waste if time seeing Incoligisrs today, but I intend to put them on the spot. As in What exactly can you do for me-because you have done nothing so far? I'm wondering if this is part of financial cuts and if I find that it is(how) I'm going to make a stink that won't go away. GP gave me a spacer for my inhaler Q Var 50. Used it last night & for the first time. I woke up not coughing & wheezing. Don't know if coincidence or it was the gin, but made a refreshing change.


Hi Laura, someone should remind your GP that he is in the caring medical profession not in a business with '' use by dates''.

Do you have any contact with a lung cancer nurse or Mcmillan nurse to help mediate your ongoing treatment. Surely the NHS can ensure that they are giving you some advice on the way to go on with life whilst trying to alleviate any symptoms, such as making sure you've got the correct inhalers.

Hope you got more positive news today and replenished your supplies.



Hi Laura, reading yr posts is very oddly making me smile, I honestly admire yr zest for the funny side of stuff, and yr determination for not putting up with crap, our family is going through the ringer at the moment Mam is very ill with COPD which just rolls off the tongue. Although the doctors hav told us numerous times that mam is on the downward slide, well trying to b brave, my mother still has her sense of humour, and when I reach out to hold her hand and take a moment to treasure her cos I know that it might not b able to do this much longer, I do and hope that u have a strong network of support and yr not facing this information and appointments by yrself, I am going to emmerse myself in some quilting books, and while away the night in this shitty room with kind care nurses who r running around like blue ass flies while my mother snoozes until the next morphine injection, all my lov D X


Hi Quilter, so sorry you are going through such a sad time, but sure that it is a great comfort to your mother to know you are so close by, even if it is a shitty room. I'm sure your beautiful quilting will help. There isn't any easy way to help our loved ones to transit & it is the last thing you can do for them, to be there and let them know how much they are loved. There can also be beautiful moments amongst the pain.

I lost my mother a long time ago and it was awful. There was only me of a very small family to support her. I used to write her silly poems, which tickled her no end. This is one of them-that was a bit of a private joke between us.

The Titslinger

You used to laugh & scorn me, ridicule my chest

Cos a God gave me a little bit, to you he gave the rest.

Your bras were big & buxom with iron reinforced

To save your boobs from falling out & stop them getting lorst

On wash day it was awful staggering in your legs, to get the thing upon the line it took a thousand pegs .

If it rained cor blimey, that really was a laugh, the seagulls flew from miles around to try and take a bath.

For o ne thing I am grateful and t his I loudly shout, I'm glad You didn't burn your bra, we'd have never put it out.

But now that things are different and what was there has gone(it isn't really all that bad you've still git more than some)

I will nit rudely poke fun or idly criticise. When you are feeling better, we'll buy a smaller size.

You just gave to do what you need to do to cope at these times.

My thoughts are with you stay strong for mum and keep quilting. Wush I could do that. I love the patterns of quilts

Love & light




How are you doing at the moment ?


Hi Dianne-just back from hospital after getting results of brain & lung scan after bulk if chemo treatment. I have one left 23rd Dec. Doesn't seem to have gad much effect in brain-only in as much as it has not got worse-so I suppose that us a positive, but was hoping for more. Has had a bit more effect in centre if chest & lymph nodes-but no effect at all on big bad lefty. Option now is whole head radiotherapy, in which I will lose my hair(I haven't with chemo) & it will take a long time to come back. Could also effect short term memory & again no gaurantees. Don't have to make any decisions immediately-but another big one for me & not sure if it's a route I want to go down-maybe time again to look at alternatives.


Hi Laura, sounds like life is a bit tough at the minute. You sound like you weathered the chemo better than you thought you might when you were diagnosed last year, not long before me. I had my chemo in February, I had 4 sessions and I must admit apart from being very fatigued I got through it very easily. I had CT, MRI and bone scans back in the summer and all was OK and stable. I've been having a lot of shoulder/neck/chest pain. They brought the CT scan forward so I will get the results on 23rd. I am not so far having brain trouble, except I can't remember lots of things, also going more deaf that I should be, apparently because of the chemo, who knows? Good excuse when I don't want to do things. LOL I seemed to get more better after the chemo finished so hopefully yours will as well. The first and second lot didn't have any effect to the point they were thinking of stopping it.

I really think your Doctor is an a...........e or something similar, mine have been brilliant, I got MRI and bone scan merely because I complained of a couple of headaches and backache. My surgery and the hospital are superb. Have you got enough support rather than keep trying to do too much yourself. Check out what Marie Curie can do as well as Macmillan, I have 3 men at home so lots of support even though more work than I sometimes need. But they won't leave home LOL.

Have a good Christmas and see in the New Year with the plan to see next years as well. Got to keep the fight up against the 'little bastard'.

Jeanne xxxxx


Hi Jeanne, Happy New Year. Sorry it's a bit late. I was really pleased to see the back of 2015 & the last chemo treatment in 23rd Dec kicked me like a bucking bronco. Don't know why-but t's over now.

My daughter keeps telling me that I'm deaf too. I will get hearing & eyes tested when the chemo is out of my system.

Yes, my GP wasn't the best initially, but it be fair he can't do enough fir me now & not totally sure anything would have been any different art from the car that I now have to try & sell...Grrh!

No, I provably not got enough support-but that's my own fault because I won't ask. I suppose I shall have to. My biggest problem at the moment us dreadful back pain & difficulty walking. I thought it was something to do with the cancer, but oncologist thinks not. Could be herniated disc, got to see GP.

OMG! All those men to look after. I hope they look after you as well. I've never had mch luck that way😔 Yes, I 'm hoping that the chemo effects will wear off, but I am also cutting down on steroids & am surprised at the side effects they have caused as well as horrendous weight gain. No such thing as the free lunch!

Hope all is as well with you as possible & 2016 will bring something good.




Dear Laura,

Hope you got through Christmas and New Year ok. Thinking of you and hoping things are more or less in your control. I enjoy the spirit and energy in your updates, despite the despicable GP and arrows of outrageous fortune. Keep strong. Katherine xxx


You may also like...