Hi there everyone … haven’t written for a few days as i didn’t want to bore everyone stupid with daily updates but thought i would just give an update today after Lisa’s 8th session of WBR.
Lisa saw clinical Onc yesterday for a review. He says he is giving her the two weeks of WBR and then 2 days next week of concentrated rads to tumour at back of head. Originally they were going to do either 3 or 4 weeks WBR. He added that she would be getting the same amount of rads as he had originally planned but in a shorter time. After we had come out Lisa got a bit worried because she had never heard of this before. I believe that you can only have WBR once and so she wants to know that she is having the maximum dose this time. Has anyone else heard of having a higher dose in a shorter time. I would have queried it at the time if I had realized that Lisa was worried. Poor Lisa she says that while in with the Drs she just goes along with what they are saying and doesn’t think to ask the right questions until after she has come out.
She is doing Ok but very tired in the afternoons. She now has such a fat face and stomach and hates it but is permanently hungry. She is still on the 6 mg steroids and thankfully hasn’t had to increase them again. We try to do some walking in morning albeit it slow because she just crashes in afternoon. So foreign to Lisa who used to run circles around everyone and was still going after everyone else had collapsed! Also she started getting a funny tingling sensation on her scalp this afternoon so I suspect she is about to lose her hair.
Friday after her rads session she has the planning meeting for the 2 sessions next week. So that will be another long morning by the time we have had to wait. As it is we are gone all morning … 15 miles there and 15 miles back in quite heavy traffic… bombing along in my little old Fiesta! I don’t mind its just that its a long day for Lisa having to get up and out early. As for me I don’t mind what I do as long as the treatment works. She needs some good news for a change however small.
Love Sue x
Hi Sue,
You can always phone the Onc’s secretary if you realise you have unanswered questions afterwards. They can find out for you, or you may even get a phone call from the big cheese him/herself! It is in their interests for the patient to have a clear understanding of what’s happening and why and have their worries allayed.
Really hoping all this hassle and ordeal gives great results,
Jacquie
Thanks for that Jacquie … we will do that.
Sue
Hi zotam,
Just wanted to agre with Jaquie’s comment, pleased you’ve seen it.
In my experience I’ve always found the onc sec to be most helpful.
Take Care
Jackie xx
Dear Sue and Lisa
Thanks so much for letting us have an update. I know there are many of us here who are always looking for a posting from you, so please keep writing when you can, we are all thinking of you both and your family. This must be such an exhausting time for you both, you are being quite incredible. As Jacquie says, always phone to the oncologist with any unanswered questions, there is nothing worse than worrying. We will all be thinking of you. Hoping you get the good news that you so much deserve. Love and hugs. Sarah xx
Hi Sue and Lisa
thanks for the update I know I always go on about my little book but I have been making notes for four years and it really helps plus my onc and his secretary
will always speak to me after my appointment they are used to me by now. Good luck with your treatment and do not worry about how you look you will soon be pretty again plus in better health.
Has anyone heard how Mills is I am sending best wishes to her as well.
Love Debsxxx
hello Sue and Lisa
Sorry I have not posted but finished rads last Friday and since then I have felt like a train wreck. Lisa seems to be coping much better than me but as my friends keep reminding me I am no spring chicken. I am glad you are getting out now that the weather has improved. I am not sure about doses of rads etc, but they can and so alter them as they think fit. Probable best to get it straight from the horses mouth. Like Lisa I have the munchies, can’t beleive how much choc. I have eaten!! I don’t even like it. I have kept on 8 mgs steroids and will probably start reducing them next week. I know they owly so WBR once but from what Gemini said there is the possibility of gamma knife. Keep smiling, enjoy the weather and much love to you both
Colette xx
Hello again everyone
Just back from 9th sessions of WBR. Lisa too very tired Colette … exhausted by the time the afternoon comes around. One more to go and then the two concentrated to the actual tumour at back. The hunger is awful isn’t it? Lisa only said this morning that she would give anything to be back to normal again if ever that happens. We were also told that it could take some weeks to get over WBR. She is just so afraid that the rads hasn’t worked.
Love Sue x
My thoughts are with you and Lisa, Sue.
Hugs Jules xxx
Sue at the hospital I was treated at (for primary bc) it is standard to give the same dose of radiotherapy over a shorter period of time.
They do this for all types of cancers.
Apparently there has been research to show it’s as effective and has benefits both to patient and hospital e.g fewer visits to hospital is less disruptive for the patient and cost effective for the hospital.
Really hope that this works for Lisa. Thinking of you both.
Love
Claire x
Hi Zotam
I am almost at the end if my WBR, I will be finished on tuesday 15th April and cant wait. I also have the tingly thing and fuzziness like a pressure in my head I think alot of it is to do will the steroids too. They have me on 8mg at the moment and although I am tired its making me very active and keeping me from going asleep.
I didnt have any surgery to my brain and they are giving me 10 treatments at half dosage because I took such a bad reaction when I had my Radiotherapy to my Breast in feb 08. I hope that Lisa continues improve and my thoughts are with you
Love
Angela
Thank you Claire and Angela. So it could be right then Claire that Lisa is having the same amount of rads as she would had she had it over 3 or 4 weeks… that will put her mind at rest but she sees Onc again next week so I will ask him to be sure.
So Angela you finish the same day as Lisa as she has her extra two sessions Monday and Tuesday. Lia has a busy day tomorrow because we have to be at Poole for 10.15 for her rads session and then wait for planning session and then when we get back she has to go to our surgery at 2.40 for her zoladex injection. so she is going to be well and truly shattered tomorrow. Lisa also describes the feelings in her head as fuzziness and pressure and also her neck sometimes crunches but that could be because the main tumour that is left is in the cerabellum. Just looking forward to weekend now so that she can have a lie in and not have to get up and rush around to get to Poole each morning.
Love Sue
Hooray its Friday! Two days off for Lisa. She did so well today as she had to be up early for her WBR session and then planning for her two extra ‘blasts’ on Monday and Tuesday. She had to have xray this morning with mask on and lots of drawings and dots around her head. She saw the Onc very briefly as he popped his head around the door and asked how she was … he seemed surprised that she was as bright as she is despite the very fat face and having no balance problems although I know this can still come even though rads will have stopped. She described herself as waddling along like Jemima Puddleduck! Still no hair loss yet after two weeks of rads but definite tingling and tender spots so she is waiting for it every time she brushes her hair … what little there is of it after Chemo which only finished in October. After this we came back here and had some lunch … trying to help her stop eating cakes and pastries by getting her healthy meals this week … today we had small jacket potato, prawns and salad. She couldn’t resist finishing it by eating a packet of cashew nuts! but that is Lisa… then she had to go for her zoladex implant at our local surgery and when we got back she said that she wanted to make some muffins, so we did. She is really tired now but was so determined to do the baking … I wasn’t going to try to stop her, I will help her do whatever she wants when she has a day like today. Its me that is about to collapse! Not that I mind as long as I can see her smiling.
As I keep saying I just hope that she doesn’t get any more knock backs just at the moment when she is trying to be so positive about everything.
Hope everyone else has a good weekend
Love Sue x
Dear Sue and Lisa
just to say have a lovely weekend hope the weather is kind to you. It is dry and sunny in Cornwall but the wind is getting up.
Love Debsxxx
Same here Debs … but i guess Cornwall is only a stones throw from Bournemouth across the water!
Sue x
Really hope you have a great weekend. I’m on the other side of you in hampshire - bit of a mixed bag of weather for this weekend but as long as we see some sun, it always makes me feel better and hopefully it does for you and Lisa.
I symapthise with the steroid face and eating. i had steroids for my lung mets during the summer and when we renewed our wedding vows in October, in all the photos I look so red and round!! I stopped them shortly afterwrads but it has taken till about february for my face to come back to normal and for me to lose the weight but then as I’ve been having trouble swallowing since december it’s not surprising about the weight loss.
I have been away for a few days and so was pleased to see you posting about Lisa being able to do things like muffin making and her balance being OK. I wanted to phone someone up to look at the internet for me to see how things were for you both.
I hope you both manage to get some rest and lie ins this weekend and enjoy some good times together.
All the best
Katex
Hi Sue - been following your wonderful caring journal with Lisa. Apropos steroids - I was 24 yrs old when I was dx with Crohn’s in 1970 - an almost unknown disease then. After a laparotomy (no colonoscopies of endoscopies in those days) my surgeon and gastro decided I had too many ulcers and crypt abscesses to resect, so they put me on 60 mg of prednisolone a DAY. I was only 6 stones when diagnosed and within 6 weeks doubled my weight, but hey, the steroids kept me alive.
I got the big fat moon face, the fat pad on the back of my neck and had no clothes that fit me - my mother came down from the North East to London to take me out of hospital, and brought me new underwear and clothes that fit - an absolute angel, sadly gone now.The weight affected my heart so I was put on a 750 calorie diet - luckily I don’t have a sweet tooth but it was so difficult as I love cheese. A half of ounce of butter a day, two small potatoes or 2 slices of bread, etc.
I did do the diet, It was a very difficult time for me as I had a new job as a European Training Manager for a computer company, and a psychopathic husband, who thought my Crohn’s was all in my head - should have been proactive and told him it was in my butt!.
There really is hope …I can attest to that… Lisa can get the weight off in the future, and the hunger will go, the amount of steroids she is on is so small compared to what I had. She sounds as if she doing so well emotionally.
You are a wonderful caring mother that I am sure Lisa so really appreciates, as I did my Mum.
Liz.
Wow Sue, you really are the most amazing mum that anyone could have. What an absolute rock you are for Lisa. Do hope that you are both able to relax a bit over the weekend. Don’t forget to really look after yourself as well as Lisa, no wonder you feel exhausted sometimes with all that you do and all the running around. Thinking of you both from here in Australia! Sarah xx
Thanks for that Sarah. Having people like you and the others writing to me really helps and hearing others stories really help too. Knowing that there are people who really understand. I think I am just a normal Mum who is gripped with fear and just trying to do my best. No text book on the subject! The thought of losing Lisa is crippling me inside but outwardly I know that won’t help Lisa and so I am just trying to be as positive as possible. I am lucky to have a daughter who as an adult is truly is my best friend. She has always been the most wonderful caring and thoughtful daughter especially when I was ill a couple of years ago. She has always won the hearts of Drs, nurses and other patients with her cheerful, smiley attitude. We have never had a cross word, do lots of things together and fortunately have the same sense of humour which is getting us through so far. For that I am lucky. I don’t stop thinking about her for one second and keep praying for a miracle even if that means only having her around for a few more years. Straw clutching it may be but in the mean time we try to make the most of the good days … hopefully there will be a few more of those yet. Just searching and searching for something to give us a ray of hope. Lisa says she will try anything the Drs suggest. She so wants to live. It is so hard to take in that this awful thing has happen to my gorgeous girl when she was doing so well. I have heard so many times that being positive can get people a long way with cancer so we will continue to be positive.
Incidentally Sarah … got our Aussie relos over here in UK at the moment … they are due to visit us in couple of weeks for the weekend.
Love Sue x
Meant to say that I smiled at your description of the psychopathic husband Lizzie! Sounds as if you are the same age as me. Thanks for the positive bit too.
Love Sue x