So sorry Taz that your wife didn’t make it … it sounds as if she was a very strong lady. Thank you for bothering to write to me and for your positive thoughts. Its this that makes me feel better. Today Lisa is feeling so totally exhausted. She is on 16mg of steroids which is the full amount and I am hoping that it is this that is making her feel so lethargic. Being normally such an active girl and full of energy it is very hard for her but at least on the 16mg of steroid the ‘crushing’ feeling in her head is a lot better. She gets dizzy when she stands up from a sitting position though. We are all dreading Sunday and the op but she is looking forward to it because she says she can’t go on feeling like this.
Does everyone think that it is the steroids making her feel so exhausted all the time.
Thank you everyone else for your kind comments … believe me it really helps.
Love Sue x
Dear Sue
I am so upset on reading about your daughter … I know there is /or is going to be treastment out there just as long as we all stay around long enough to get it… we just need to keep up with the new developments and contact those involved in the trials.
I wanted to mention to you that I’ve seen in my research a number of other new treatments for brain mets in addition to the gamma knife. There are some new trials in nanotechnology where they attach the radioactive material to nanospheres (can go through blood brain barrier). The nanospheres attach themselves to the cancer cells via say the HER2 protein and then deliver the radiotherapy (or chemotherapy )direct to the cell hence meaning other tissue is not impacted and this also means additional treatment could be administered where there is a limit to how much radiotherapy can be used. I’ll look again for the references and coem back with the sites…
Thinking of you both on Sunday .
LOL xxx Jane
Dear Sue
I have been thinking about you and thought I would just drop a quick note to see how you are holding up. It is terrifying watching your child go into surgery (doesn’t matter how old they are) and I know from experience how long those hours waiting are. The only bit of support and encouragement I can give you is to remember that she is a) receiving expert attention b) the are removing what is making her ill … once the op is over she can looking at what treatment etc are on offer to her.
You mentioned her going for a MRI on Monday. Have you had any results?
Hi Avon … no we didn’t get results this week … the MRI was to take a lot of 3D images for the surgeon who will use it while operating apparently. The MRI she had done 2 weeks ago showed the large tumour in the front of her head and a small one at the back near base of skull. Its the large one he is removing and then as soon as she is healed she will have WBR to hopefully get rid of small one or any tissue left from the large on. This is where he said about gamma knife should the radiation not get rid of smaller one. So worrying isn’t it? She isn’t at all well despite bing on full dose of steroids … 16mg. She is totally exhausted which is getting her down and making her tearful and then when she gets up or tries to do anything she goes really dizzy and has what she describes as a ‘funny head’. I am hoping that the exhaustion is the steroids. She also now has the ‘moon face’ this last couple of days and hates that too … she is getting really depressed and we are all trying to cheer her up. I cry in private, but she doesn’t know that i do.
Hi Jane … thanks for that I will try to look into it but will be pleased if you do find out anything else. It all seems so awful seeing as she was told a little while ago that no cancer could be seen anywhere in her body and she was bouncing with health but then she hadn’t had a Ct to the brain until she had headaches and started being sick. Everyone said it was the radiotherapy so it wasn’t until she started being sick that we worried.
Thanks everyone
Love Sue xx
Hi Sue,
Lisa is exhausted and has a fuzzy head because of the tumours and because of the steroids trying to control the swelling. It may also be because of the position of the tumours, pressing on nerves. I know tumours normally at the back of the head affect motor skills, balance, ability to walk etc and I think tumours at the front (although I may be very wrong here) affect memory, personality etc. As the tumour grows fluid builds up inside the head causing the pressure (hydrocephaleus - water on the brain) and the fuzzy feeling. I don’t think there is anything more that can be done at the moment until Lisa has her surgery. This is why the waiting becomes intolerable because you know the surgery, risky though it is, will relieve the pressure. There isn’t much space between the brain and the skull, it is such a confined space and this is one of the reasons why getting clear margins in brain surgery is extremely difficult.
Will Lisa stay in hospital from Saturday or earlier? Do you live near to the hospital Sue? As Sunday approaches you will dread it for what is about to happen to Lisa but you will also welcome it and want to get the surgery going because you know it will be the start of her recovery. Brain surgery can take a long time because the surgeon’s have to go very slowly. Gone are the days of the ‘heroic’ surgeon who got every last bit of tumour out only to find in future follow up clinics that the quality of life of his patient was none existent. Nowadays, it is better to ‘debulk’ or take out as much tumour as is safely possible, so that rads/chemo can do their job thereafter and the patient can have a quality of life back.
I assume Lisa will go into intensive care after her surgery. I think they will probably sedate her for at least 24 hours to allow her brain to settle down. This will be one of the worst moments for you seeing Lisa hooked up to all sorts of medical equipment, beeps going off etc. but this is one to one care and she will be very well looked after. You will probably want to stay with Lisa once she has returned from surgery. Instinct tells you to stay. When my little girl was in intensive care one of the nurses told us to stay for a short while but then go and try and get some sleep, she was in good hands, they would ring us if there were any problems (we were staying in the hospital home from home) but we would need all our strength to help her in her recovery so it would be important for us to try and get rest. She was right - wise words indeed. I know what you mean about crying in private. Remember that when you see Lisa after surgery she may hear you - somehow you will have to try and keep those tears under control as she needs you to be strong - my little girl flicked her eyes open for a short time when daddy spoke to her - a moment we will never forget.
These next fews days Sue are going to be emotionally draining for all your family. You simply cannot prepare for what is ahead. I found it very difficult to cope around children who were my daughter’s age, I kept thinking why are you ok and my little girl is having brain surgery.
All we can hope for now is that surgery goes well and Lisa can make a good recovery. My little girl couldn’t walk after surgery, she couldn’t swallow food properly and her eyes were at odds with each other but do you know what Sue, she overcame all these things and except for her hair loss from chemo, you would have absolutely no idea what she had endured. Believe it or not a good sign that all has gone well is if Lisa becomes very angry and aggressive once she has been taken off the ventilator.
I know the circumstances and ages of our girls are different but I do know exactly what you are going through, I used to cry in the shower every morning, still do. I haven’t stopped thinking about you or Lisa since your first post and I will be thinking of you both on Sunday. Hoping all goes well. Keep us posted when you can but Lisa comes first. Lots of Love xxxx
Dear Sue
My sister said that she felt drunk all the time… getting up made her feel dizzy, she seemed to feel better lying down. We were told that it was the tumour at the base of the brain that was causing her to feel so dizzy. She once described it as if the world was off centre. The dizziness made her feel nauseous at the same time - which really got her down.
My sister went through stages of depression and anger… she couldn’t understand why it was happening to her. And rightly so… she was a very good person, kind, generous, loving she was in a happy marriage with two beautiful children - so why her? Who can answer that question?
The steriods did make her more perky but she couldn’t maintain the huge doses they were giving her. Has your daughter been in touch with one of the support groups out there. My sister was quite anti in the beginning but did seem to “buy into it” once she got used to them coming around. If not just for the emotional support, they also were very good offering practical information re different benefits offered and support for the children etc.
I agree with Swissmiss, my son was in intensive care after major surgery when he was 2.5 years old and I too tried to fight with the doctors to stay the whole night with him. But to be honest I was exhausted and really needed to catch up on some sleep so when the nursesd ushered me out of ICU at 1am I did catch a few hours sleep (also in the hospital) before I went back to him. He was receiving one on one care with someone who was highly qualified and who I knew would look after him. So allow yourself that time - I can tell you that I really am glad I did because once he was out of ICU, he needed my full time attention.
Lisa must be incredibly scared of what lies ahead. I can’t imagine what is going on in her mind. I suppose the only positive is that it is operable which will give her a much better chance of fighting it. There is treatment available thereafter and there are definitely success stories out there. I think someone has mentioned kitkat to you and her story is the one that can give you hope. I also bought a book written by Lance Armstrong “It is not about the Bike”, which talks about his fight back from cancer - I didn’t realise that he had brain cancer as well. It is a very positive book and perhaps worth a read?
Take care of yourself Sue, and allow your self to cry. I always felt (probably still do) that I had to be strong and not cry but in the end we are all human and feel immense pain at watching loved ones suffer - allow youself to express that.
I will be thinking of you
Arlene
Thank you both Arlene and Swiss Miss. That has really helped to know what to expect afterwards as we hadn’t been told except that she would be in ICU. If we know that she is going to be all wired up then we can prepare for it. No we aren’t near to the hospital as we live in Bournemouth and her op is at Southampton … no neurological centre at B’mouth hospital. The shame of it is we only live 5 mins away from B’mouth hospital. So we are about an hour away from S’hampton… traffic permitting. We have to be there at 7.30am Sunday which means a really early start for us. Her op is later that morning but we don’t know what time yet. Being so far away we haven’t had chance to really talk to anyone there so we are a bit in the dark about this op. When Lisa had all her breast cancer treatment we got chance to talk to loads of staff and Lisa got to know a lot of then really well. Being very bouncy and positive with a terrific sense of humour and a wonderful smile she won the hearts of Drs and consultants. She is always recognised at B’mouth hospital by her many hats and caps that she wears and staff would wave and call to her from way down the corridors. The onc consultant from B’mouth has been keeping in touch by phone to see how she is doing. Lisa has won many hearts with her positive and smiley attitude. It is this that is making it so hard … we thought being so positive would get her through and then her world came crashing down when given the prognosis of the brain mets. Not knowing what to expect on Sunday has probably been the worst for us so once again thank you for telling me what to expect.
Love Sue xx
Sorry Arlene I forgot to answer your question … no she hasn’t been in touch with support groups maybe we should look into it. Everything has happened so suddenly. Funnily enough Lisa’s finance got the Lance Armstrong book from the library the other day and keeps telling me bits from it.
Sue x
That should read fiance of course!! Not functioning correctly!!
Sue x
Hi Sue,
I hope you don’t mind me posting - I have am 28 and finished my treatment for primary cancer in December. Having Herceptin at the moment. I can’t add any info on brain mets, but I’ve been reading this update from you about Lisa every day and just wanted to send my love. It’s so unimaginably hard. I don’t know what I can possibly say, but I have been thinking of you and your family a great deal and wanted to let you know that.
I have almost found it easier to be the person with cancer than to see my parents’ hearts breaking watching me go through this. My mum and Dad have been everything to me through this and I think from reading your posts that you, and your family, are Lisa’s strength, comfort and inspiration to keep fighting. She must love you so very much.
I love my mum, and constantly nagged her to take care of herself through this too. She used up all her energy looking after me, would cook me meals and then not eat herself. It drove me nuts! So please, please look after yourself and be as kind to yourself as you possibly can.
lots of love, thoughts and prayers and every every ounce of luck and strength for Sunday
xx
Oh, I am so saddened to hear this news. I haven’t been on this much in the last few weeks. I can’t believe this is happening to Lisa. I thought she was doing so well. We had talked briefly before about the LD flap reconstruction in another thread. You’re advice was so helpful. You are in my thoughts. I am so sad for you. Take care Sue and Lisa. All my love, xx
Hello Sue
Like everyone else who has been following this thread I just want to send you and Lisa all the thoughts and good luck in the world for Sunday. I can just glimpse how terrifying and frightening this time is for you both partly because reading your thread has reminded me of my own lovely friend and work colleague who had brain surgery 5 plus years ago now.
I hope everything goes as well as it possibly can do for Lisa.
Jane
Dear Sue and Lisa, I hope all goes well on Sunday. Much Love, Belinda…xx
Dear Sue and Lisa,
Just wanted to add my love and thoughts at this very very difficult time.
Love
Claire x
to Sue
thinking of you & Lisa also at this time & sending you love
Lorri xx
Hi Sue,
just wanted to echo what so many others have said, you and Lisa are in my thoughts and I wish you all the very best as you prepare for sunday,
Take care,
Kelly
-x-
Thank you … these posts so help knowing there are you lovely people who understand are out there. When something like this happens you tend not to talk to many people … not being at work etc … and so just knowing that people are thinking about us and wishing us well is so wonderful.
We have had a bad day today … this afternoon Lisa got very depressed at feeling so ill all the time … her head has been bad today … very dizzy and a lot of pressure and throbbing … not helped by hot flushes from the hormone treatment… and she just broke her heart… she clung on to me and sobbed and sobbed saying she just wants to feel well again. It is so hard and as i said before it is breaking my heart and i am worried that she seems so depressed. She lives with her fiance not far from here and has now gone home with him and i so wished she was staying here tonight as she kept wanting me to hug her… she just needed to cry with no one saying anything but just understanding. Its so very hard and something i hope no other mother ever has to go through.
Hopefully tomorrow will be a better day … thank you all for being there
Love Sue x
Hi Sue - thinking of you and Lisa for Sunday - all my thoughts and prayers are with you.
Sarah x x x
Just to send you both love.
D
Hi Sue I have been following your posts every day since you have been posting on here. I run in from work just to get an update on Lisa my heart is breaking for you I would just like to say to you and your family I will be thinking of you all on Sunday. I have a little church here just around the corner from me and the minister is always asking me to come to one of his services but not being a holy person I have never taken him up on his offer but I certainly will be there on Sunday morning and I will say the biggest prayer I have evr done in my life for all of your family and another one for Lisa. I know he will probably ask me what brought me along to church well I will tell him and hope he also prays for Lisa I know he will do that for me. He came to visit me when I was going through chemo and begged me to go along to one of his services but I was to ill at the time. I know he prayed for me every week and he told the whole congregation about me and I have met some lovely people through him doing that. I was only living here a week after moving back from Birmingham to Scotland when I found out I had breast cancer it was such a shock I will tell you about my story when you feel much better. My thoughts will be with you all weekend and Lisas and her fiancee I dont know what else to say to you except please take care Love Linda x