This is the second time I have written this… I was cut off and lost it … so if it comes up twice I apologise. I will try and remember what I wrote!
Well Lisa had last rads to brain this morning thank goodness. It will be so nice not to have to do the 30 miles each day. Lisa says that maybe with what little energy she has she can use it trying to lose weight instead of using all her energy going backwards and forwards to the hospital. We saw the Onc afterwards who was quite upbeat this morning talking about what possible treatments they could do next and said that they would take each step one at a time. His attitude cheered Lisa up as lately she has so many medics saying how poor her life expectancy is etc. She knows the odds and isn’t ducking it but needs to talk about living now and his attitude was just right not promising her anything but saying how much there is that they can try. He even told her of a lady he has who had a particularly aggressive brain tumour and only months to live but with a good response to treatment is still here 10 years later. He also added that sometimes an aggressive and very active cancer will respond well to treatments especially rads. Funnily enough Lisa was told this 9 months ago … she has IBC for those who don’t know about Lisa…so we see the Onc again next week at Poole and will then get appt back at the medical Onc at our local hospital to sort out scans, further chemo etc. He was a bit concerned about the pain … more a bad ache in her lower back … just about her waist. But when he examined her she felt no pain or tenderness so he said to leave it a week and if its as bad he may send her for an xray. She has put on a lot of weight and is doing little exercise and so is hoping it may be slack muscles or tendons seeing as it doesn’t hurt all the time. She has to continue with 6 mg steroids this week and then reduce to 4mg next week to see how she gets on. He said there will be a lot of inflammation following the rads right now. I must admit her face is even more puffy this week so maybe thats why.
So I left a much more positive Lisa not long ago, She isn’t expecting anyone to promise her a long life … as I said she knows the odds … but it was so nice to have someone talk about further treatment with enthusiasm. I believe that being positive can help you all so much.
Next appt is at local hospital for the dreaded blood tests on Thursday … no veins left and she dreads it! but she is having it done on the chemo ward where they have the heat pads and lovely nurses who understand.
Love to all of you, my heart goes out to all of you … hope you are enjoying the lovely weather.
Sue x
Hi Sue,
That’s great news that the rads are over, and you were able to leave the clinic with positive stuff ringing in your ears and sunshine on your faces. Tell Lisa to definitely not waste her precious energy worrying about weight loss! I’m sure the two of you can cook up some much better schemes to exhaust her… naked horseback riding? rally car driving? Belly dancing lessons?
Thanks for keeping us informed
love Jacquie x
Hi Sue
Great to hear Lisa is nearing the end of her treatment and I really wish her a speedy recovery, What a wonderful caring family you all are.
This together with Lisa’s determination and positive attitude will help enormously. It is obvious lots of people have been reading your inspirational posts and are all behind you 100%, the power of collective thought being another important tool in the box?
My wife Sue has the dreaded shrinking veins she finds hot water soak and getting the nurse to use a ‘yellow’ needle, for children I believe, helps a lot.
There is however some sort of secret one upmanship thing going on with most medical professionals, it drives my wife mad, they simply won’t listen to her a lot of the time and all think they can get that sample first time no problem, they are almost all defeated in the end resulting in Sue’s arm covered in the most amazing bruises sometimes. Often they have to go for a vein in the foot, but this can be painfull.
Forward to spring and summer sunshine ahead!
Best wishes Dave F.
Dear Sue - It’s wonderful to read your posting and know that this particular stage of treatment is now complete and that you and Lisa had a really positive and encouraging meeting with the oncologist. That’s brilliant and must feel like a much needed breath of fresh air for you both. Thanks for your message on the other thread that was going - you mentioned your Aussie relatives coming over and I do hope that they will be looking after you rather than the other way around! The other thing I was thinking was how very moving and precious are all the little insights that you share with us here - baking together, little things that Lisa has said, amusing or determined conversations. I wonder whether you are having the energy, whether together or separately, to keep a diary for yourselves of this time. You must be so exhausted and run off your feet that when you look back this period will surely take on some kind of dream like quality. With your special love and care and way with words if you can spare some time to record for yourselves this shared journey I am sure that will be a really precious record and fitting tribute to you both. You are a most amazing mother and daughter partnership going through the unthinkable with utmost love and good humour. The biggest of hugs to you both. Sarah xx
What some good ideas Jacquie!!
I agree Dave in that the medics always say not worry they will get the blood or vein with a grin on their faces. Usually 2 hours later a poor little nurse is still trying to get veins up and down Lisa’s arm … tears streaming down Lisa’s face … nurse feeling awful and then a young Dr is often called who, painfully, manages to do it. So many times we have been through this. They have done feet but she still has bruises on them from when she had her brain op and they had to use veins in feet. Almost one of the worst things for Lisa. She gets so cross though saying that she has veins all over her body why do they have to keep trying in the arm?
Sarah I keep a lot of the letters that I write, I print them out … either to friends and relos or on this site … that way I thought i would keep a record. Otherwise I just keep an ordinary diary with thoughts in … like a desk diary. Yes I am really lucky to have a daughter like mine and to have the relationship that we do. She is a very popular girl with everyone and somehow it makes it all seem so damned unfair that this has happened to her , she would be the first to run around anyone else who was ill.
No hospital today but Lisa’s little dog Lizzie has to go to vet to get an appt to be spayed. Just has to have check up first. Poor little Lizzie … her turn today! Lisa was going to her ‘done’ before her 1st season but Lisa was having her mastectomy last Nov when Lizzie came into season for first time so that was out. Nothing is good timing this year.
Love Sue x
hi sue,
i have been reading your posts about your daughter, i too have to say how strong you have been and how positive lisa is with the whole treatment. having you must really help her to bounce off your positivity too.
ive just been dx with brain mets, had an mri this week and have found over 5 tiny tumors in my brain and will be undergoing some WBR too, im not looking forward to it and am quite frightened, im not sure what to expect at all and i didnt know i would have to have steroids, but reading from the posts from you and others with brain mets it seems i would have to take them.
i have liver and lung mets too so having brain mets just seems like things arent getting any better, and like you had a fab xmas and new year thinking things were going to be okay for me.
im pretty much tired most of the time, had to go up into london thursday and friday so was totally knackered when i got back in the evenings, plus i get the shivers when the weather drops in tempreature which is crap.
anyway i hope to be as strong as lisa through my treatment, keep posting.
H
xx
Hi Hemly
The WBR itself was Ok for Lisa … much better than she thought … she had a 45second ‘blast’ each side of her head … totally painless of course. Apart from the tiredness in herself her head actually felt better as it went on. Lisa had been having a lot of pressure headaches and dizziness beforehand. Not forgetting she had a brain op too to remove the large tumour in front of her head only 5 weeks ago. So we are hoping that feeling better was because the second tumour in the cerebellum was reacting to the rads. But she was surprised that she didnt feel worse as it went on. The steroids are because the inflammation gets worse with WBR … well thats what the Onc told her. As you know she finished rads on Tuesday and now … Saturday … has just started to reduce steroids to see how she goes. Today she has taken 4 mg instead of the 6mg she has been on. At one point she was on 16mg for about 2 weeks and it does mean that she has a really big moon face and has put on weight which she hopes she will lose as she reduces steroids.
Anyway don’t be afraid as it really is OK. You have to be fitted for a mask which Lisa didn’t like the sound of but says it was actually alright and not scary like it sounds. The one problem Lisa has at the moment is pain in her back … it has moved around a bit in lower back and is now across her left hip although not there all the time only when she walks or stretches. Don’t need to tell you how we are praying its nothing sinister. She is seeing the Onc consultant on Monday and has to have blood tests and so naturally we will mention it to him … poor Lisa more scans I suspect and trying to find veins. She was told that she wouldn’t have a brain scan for a few weeks yet because at the moment it wouldn’t look a lot different and it needs a few weeks to show any change. Other than the back its just mainly tiredness and lethargy that is affecting her. She just keeps saying that she would love to be back to normal to be able to exercise and lose some weight. She is normally about eight and a half stone but is now approaching 10 stone! She has been craving carbs and stodge. I have told her not to worry as we will try to get her to lose some weight soon. Going to buy a load of healthy stuff for next week.
Please keep in touch and let us know how you are doing and I will let you know about Lisa and her back pain.
Love Sue x
Hi Sue,
Thanks for your comments and on previous post.
I know i will have to be fitted with the mask an yep it doesnt sound appealing at all!! But like you said it wasnt too bad for Lisa so im going to be brave.
Ive started to get a few pains down my left side down to my leg and an achey pain from the end of my spine and left hip too, i will mention it to the onc aswell. My husband has spoken to the onc this morning and mentioned that they wanted to start rads first before the start the chemo again. Its been about 6 weeks since ive had any treatment, ive been ill so they stopped chemo and then the brain mets.
Im not looking forward to the steriods at all. Ive just about lost my weight from last year treatment and now im going to get fat again, mainly i hate it when people make comments on how much weight ive put on when they dont even understand what im going through.
Hearing your experinces has put me at ease alittle as i didnt know what to expect. Thank You.
I hope you both had a great weekend. Likewise i will fill you in with whats happening with me.
H
xx
Lisa has to see the Onc this afternoon at 3.30. The pain in her left hip is not at all good this morning and i am so worried but keep hoping and praying that its something else. She said to tell you Hemly that the mask is Ok and it sounds worse than it is and the rads are OK too. Yes the weight thing gets her down at times but we keep telling her that she would look so much worse if she had lost weight and looked hollow and ill. Not forgetting she was on 16mg of streoid which is very high. I would buy her some larger clothes but she won’t let me saying that she will lose it and it will be a waste of money. If she hadn’t had the brain op and been so ill afterwards she would have been able to exercise more. I keep telling her that its just a hiccup which we will get through.
will let you know what Onc says this afternoon
Love Sue x
Good luck!
Let me know how the appointment went.
xx
Hi Sue,
I always read your posts to see how Lisa is doin. Blimey, I hope her pup got on ok with the op, we are getting our pup spayed in a few weeks and already I’m dreading it!
Anyway, I really hope that Lisa’s onc appt goes well this afternoon and that the pain proves to be nothing sinister,
Take care,
Kelly
-x-
I like to keep an eye our for your posts on Lisa and read that you have an appointment today. Fingers crossed it will be nothing serious. You probably know by now as it is six oclock, so will keep an eye out this evening for any posts from you Sue.
Best wishes.
J x
Thanks everyone … as you know she saw Onc and had the dreaded blood taken! Nurse managed it after heat pad. To cut long story short Onc didn’t seem too bothered about back/hip pain although he gave her a good check over and said that high steroids can cause lots of joint pain but what he did seem bothered about was that under her arm … well more towards her back the muscle where she had LD Flap has become a bit lumpy … probably due to lack of exercising what with having op and not being well but as he prodded and poked and pushed there was obviously something else he didn’t like the feel of and said that he can’t say what it is but he may involve breast surgeon to have a look. Lisa’s face fell as i expect mine did too. Anyway he wants 3 scans this week … 2 CT … one to her brain and one to her whole body and then an MRI scan to her spine … then he wants to see her again at end of week … so its going to be one of those weeks yet again! We may have to have scans at private hospital to get them done this week … Lisa has some insurance through work but whatever the cost i would find the money to get it done. Other than that he wants her to stay on Letrezole and the monthly zoladex and said that the brain/ blood barrier will now be open and allow Letrezole in. He will discuss chemo if anything else is found in body. She has to stay on 4mg of steroid until weekend and then try to reduce to 2mg.
So thats it until end of week … more waiting, more nail biting, fingers crossed again. Poor Lisa just needs one piece of good news.
Just getting tea so had better go and rescue it from oven!
Love Sue x
Hi Sue and Lisa,
Im still out here wishing you well and a recovery from this one.im about to have 6th and final fec this week, then some recon to nipple when I can be bothered.You were so encouraging when I first came on the site, and shared Lisas story with us, thankyou. Hope the sun shines on you both soon, I sat out in it the other day, I appreciate such simple pleasures these days. I sold my wig- called it squirrel, hope you have better luck with Lisas new one, please send her my love.
LOL Julie XXX
Thanks Julie. Lisa digging wigs out again because she has now lost all her hair again with brain rads. She would feel better if she could lose some weight …her face is so bloated … my heart bleeds for her. I personally don’t care how fat she is as long as she is well but I just want what she wants so we are working out a diet.
Sue x
Meant to say Kelly … they couldn’t spay Lisa’s dog because she is on the verge of coming into season again! So we have to put up with that again unfortunately. She is now to be ‘done’ about June. Lisa wanted the op at beginning of March but of course was unwell herself. Timing is always wrong.
sue x
Hey Sue,
Im glad to hear that the pain isnt anything serious and i will pray for you that the lump underneath her arm isnt anything either… fingers crossed. I do hate mri scans hate the closeness of it all! At least you both will be enjoying the sunshine to and from the scans, i know it will be tiring for lisa but hopefully the sun will cheer her up.
I have an appointment tomorrow morning to be fitted with my mask!!! and it see the consultant to discuss the treatment, they want to get me started as soon as possible. The consultant wants me to start on the radio therpay first and then chemo afterwards, similar to what you mentioned to open up the vessels to allow the chemo in.
I have a couple of wigs too, but i really didnt want to go back wearing them not sure what i’ll do this time round.
H
xx
Lisa has had good day today and has felt good apart from some pain in lower back. But we went to Tesco and she bought a couple of T shirts … larger than normal as she has put on weight, hence needing some more to make her feel better … and then we came home and had healthy lunch and then she helped me pot on 15O tiny plants. I did it on breakfast bar in kitchen so that Lisa could sit on bar stool. She seemed to enjoy acting ‘normal’ instead of having to sit around just because she feels too ill to do anything else. Then after that we did some facial waxing … she has hated getting hair across her top lip and also lots of hairs down side of face. All due to hormone and steroids apparently. Now she is baby smooth again and feels so much better… a bit pink but she says thats Ok as long as the hair has gone.
She had phone call about having 2 scans tomorrow … CT to head and body and then MRI to Spine … it has to be done at private hospital to get in this week. Don’t need to tell you how much I am hoping and praying that there is no cancer spread and that the WBR worked. Will know by end of week I guess.
Its going to be a long morning and the dreaded needles and vein hunting again but I will let you know how she goes.
Best of luck for tomorrow Hemly … you will be OK … just think its the start of getting rid of these darned mets. Will be waiting to hear how you get on. How many sessions do you have to have? Lisa had 10 WBR and then 2 extra on the tumour area at back.
Love Sue x
Hi Sue
Although I was diagnosed 3 yrs ago only recently signed up her. I have ibc and currently skin mets have returned, noticed you on other thread ibc and wondered about your daughter.
Just found this thread and although I don’t know Lisa’s full story, above gives me some idea.
She is very brave and positive, I hope she has good results.
Love Mel x
Good luck Sue,
Jules x