Hi everyone. Thank you so much for all your support and comments … its helps so much. Lisa had 4th WBR Lisa has no energy today. Not helped by the fact that she picked up ‘the sniffles’ over last weekend and it doesn’t seem to have improved … in fact she has a cough but its more a throaty cough than chesty. I wanted to ring Onc today but Lisa wouldn’t let me and told me to leave it until tomorrow. No Drs available at Poole hospital again. Its worse first thing in the morning and then she is quite breathless when she walks. She keeps insisting that she must pull herself together … poor Lisa is finding it so hard to accept that she can’t fight this one. I don’t suppose they will do anything if I ring because i think you have to have really thick mucous before they will give antibiotics but i am a bit worried especially with her having no energy at all today. She insisted on walking from car park into hospital which is quite a step but was quite worn out when we got down to rads dept. I wanted to drop her outside the door but she wouldn’t have it! I know that its still less than 3 weeks since major surgery plus the rads but it is still a worry. Its no good Oncs saying that its the rads causing the mucous because these sniffles and nose blowing started before rads… something she probably caught in hospital. Has anyone else felt so listless after only 4 sessions of WBR? I will definitely ring tomorrow if she is no better seeing as the weekend is looming again. We have rads session quite early so no good ringing until afterwards.
Mills … Hope your 4th WBR went Ok today and your headaches have stayed away now you are on the steroids. Lisa is waiting any minute to get a letter from DVLA as someone said that certain Drs notify them. Also Lisa has discovered that she can get free bus concessions if she gets letter from either DVLA or Dr to say they have taken her licence away. So it could be an advantage if you want free bus pass.
Hoping for better day tomorrow as its awful seeing Lisa so exhausted so soon into rads. She is normally one of those girls that you can’t keep up with when walking and talking and its so hard to see her shuffling along and feeling like an old woman today.
Love Sue x
Dear Sue.,
I can’t answer your question about listlessness following WBR and I know that this is the question you are most wanting answered. I have followed yours and Lisa’s ordeal with this sh*t disease and having a daughter myself about the same age as Lisa I simply wanted you to know my heart goes out to you both. As a mother, you are just so courageous and it is obvious to all who read yuor posts that your daughter follows in your footsteps.
My very best wishes to you both.
Trish
Thank you so much for that Trish
Sue x
Hi Sue,
I’m so sorry to hear that Lisa is feeling quite poorly today. As with Trish I’m afraid I can’t help with the listlessness after wbr question, but I’ve no doubt you’ll get a huge response from other forum users that have had it themselves.
Just wanted to let you know that I am thinking of Lisa, you and your family and hoping that tomorrow is a much better day for you all,
Take care,
Kelly
-x-
Hi Sue, some friends I’ve got to know from these boards and also friends from my local support group have had WBR…it’s a really tiring treatment…I know a couple of them found the tiredness kicked in after the 2nd session.
Thinking of you both…x…x
So sorry to hear Lisa is so tired. I think from what I remember from one of my friends. she did get so tired and spent most of her time asleep - sorry not cheery news.
Do phone her onc or try to hang around after wbr tomorrow and see one - there should be an oncall oncologist around all the time. I think you should go over Lisa’s head about this.
Is this breathlessness new?
I can relate to Lisa not accepting her situation - I can’t accept mine on one level but do on another level. I think it is in someways good to believe you have hope and I expect in her heart she does understand what is happening but like me puts on a brave face so as not to upset others.
Really feel for both of you. So sorry.
Kate
Hi Zotam
had 4th rads yesterday and like Sue am completly exhausted. I went to bed and selpt for 12 hours Feel tired today but relishing in the thought that today is the last one. I would ask to see ONC or Ragiographer when you go today, explain your worries and they should be able to help. if your hospitals are like mine I would rather do it now than wait for the weekend. Sue must be very run down followng the surgery and rads, her immunbe system will have taken a battering. Don’t give a thought for what you think the doctors might say, just think of Sue and demand to be listened to you
Good luck today, sending you lots of love
Colette xx
Hi Collette
Lisa has another 2 weeks of WBR … he wanted her to have 15 sessions. Poor Lisa but at least the weekend will give her a break for 2 days.
Will write later
Love Sue x
5th one over and a break of 2 days coming up. Lisa still feeling absolutely shattered and says that her head feels heavy today but the cough and breathlessness seems quite a bit better today so maybe it was just an infection she picked up. Her face is very puffy again today especially on one side as it was when she was on 16mg steroid when she had her brain op … she is now on 6mg … but we were warned by Onc before rads that the symptoms and inflammation could get worse before it gets better so i am hoping that todays extra puffiness is due to that. She managed a short walk along Poole Quay this morning when we left hospital. She just wanted to stretch her legs even though she was slow and we sat down a couple of times. We came home and sat for a couple of hours and then she came to Homebase with me … we weren’t gone long but sheer determination made her do it! She is also on 3 anti emetics a day and I think that will make her very listless… I think she was given those because she was having the dreadful headaches and sickness a week before rads started.
Hope you all have a lovely weekend … I am going to try to catch up with some jobs not having to drive to Poole each day.
Love Sue & Lisa xx