Hi All - Just wanted to check in with you all. Several new people to say hi to.
Linda - How are the SEs? I hope you are ok? I have got my week off this week. Nice to have a Monday NOT full of chemicals!! My spinal op was a success, but im still suffering with the effects of the op. It was massive surgery so nerves, muscles etc healing. But, at least I am walking round. What a whirl wind for you - it all happened very fast!
jane - hi! You are doing loads! I spent a couple of days at the Penny Brohn Centre in Bristol and they were really helpful at lifestyle advice and info. I am following some of the things you are - and trying to give myself some tlc!! Not rushing round and putting others first all the time!
Neelima - hi, how are you getting on? Which treatment plan are you on? Sorry if you have posted this, im not very good at remembering!
Hi Sarah - thanks for your Mother’s day message. It was filled with laughter and tears. Just like many of us, I guess.
Hi Husband 220 - I hope you have found this thread and the hospital went well today. Any questions answered?
Love to alllllllllllll - those mentioned and those not.
Haven’t posted - too miserable. Fourth Doxtaxol this thurs, but result of CT scan tomorrow - scarry. Thinking of referring myself to Marsden as not confident in my onc.
Always very tired and that makes being at home very difficult as you are so desperate to do something!!
Have booked a holiday to Europe in July so hoping I will be up to it as walking is hard work - think positive!
SadieL.
Hello,We met the Professor today,it tooks us back to last week and all the upset.The guy was pleasant but i read between the lines that there was very little that could be done!It looks like my wife will be starting a trial in about 3 weeks with 3 weekly cycles of Pacitaxol and a weeks break,(6 times).As it is a trial,she may be given Avastin and a new tablet drug which i think was called Medicap or something,unfortunately i wasn’t thinking straight.I just feel like i want someone to tell me that she will be ok,it makes me feel like a helpless child instead of a 46 year old husband and father.
Best Wishes.
Hope you’re all doing well (or as well as we can).
Sadie - really pleased to hear your op was a success, you must be pleased with getting over another hurdle
Had my first lot of Taxol and Avastin last wednesday - my head is telling me I’m absolutely fine but my body has decided to behave like a 90 year old - talk about aches and pains in my feet and legs.
HOWEVER - I still managed to walk to the pub at the weekend and whether or not I’m meant to be drinking alcohol, it dulled the pain for a short while!
Had a fantastic consultation with a lady at a wig shop - I came out thinking she’d hypnotised me - I felt so positive - picking up my new ‘hair do’ next Saturday
Husband220 - my husband has said just the same as you, he wants to tell me everything will be Ok but knows he can’t - but a hug/cuddle or kiss seems to replace the words he can’t say
Hi all!!
Linda, walking to the pub is a priority in life. Well done. They have told me nothing about drinking, but Im on quite strong pain killers so I don’t think they would mix. I spend enough of my time asleep. So pls have a glass of wine for me!! Week one of the taxol / avastin was the hardest one. Weeks two nd three were slightly better. You summed it up with your 90 year old comment exactly!!
Husband220, my husband is a fixer. If something breaks, he mends it. This can’t be fixed or mended, but you sure can make it better. As Linda said, a hug is wonderful and sharing tears and smiles!! Just sharing. It sounds like we have it all sorted, but we are far from that and have been to some joint counselling sessions. This has helped as my OH does not talk very much at all nd there are things we need to talk about!
My shower was horrific yesterday morning. So much hair falling out. So amidst tears and hugs, my OH cut it and then shaved it. I do feel better this morning, no more dread of this happening. It HAS happened, nd the hats nd wigs will give me more flexibility!! Not just boring hair all the time!!!
Has anyone heard from Tina who started this thread? She was a regular poster. But nothing now for a while. I do remember her last scans were good, so hope she is off on hols somewhere!!
Sorry to miss you Kelly. I hope hope hope your results today are ok. A holiday sounds a really nice thing to have in your diary to look forward to nd focus on. Fingers very firmly crossed!
Hi all can I join u was dx may 09 chemo rads op and then only last wk was dx with secondary’s on lung v scared and upset at moe will be starting chemo soon yuk hope y all doing well would love some gd story’s xx
Sadie
Well done for getting through the shower episode - I’m so pleased you had your OH on hand.
My best friend,who is also my hairdresser gave me a shorter cut yesterday- I only went to meet her for a coffee - I think this is her way of helping me
Nice to see you back posting, Kelly and lovely to have a hols to look forward to. Hope that your scan today gives you good news.
Sadie - glad you feel better about the hair etc- it is pretty traumatic when it all comes out in clumps - I sometimes went for the gypsy Rose Lee (whoever she is!)look with pretty scarves and bandanas, hoopy earrings, nice lipstick etc, which can be quite flattering. It’s quite grim when it happens, though, and my son hated my bald head so I always kept it covered up when he was around.
I’m sure I read too somewhere that Tina was planning to go on holiday, but I’m not certain - I think she was feeling pretty well, though. I worry too about the people on here - we had quite a few regular posters a few months back, but now they seem to have disappeared, which is very worrying.
Hi all,
Gingerbud posted on march 30th on 'cyberknife’thread… so hopefully she is ok. My friend having hickman on 14th and starts taxol/avastin next day Sadie, it has helped her to know you are doing ‘ok’ and also helping her to prepare for side effects so thank you… anyone have experience of pleural effusion? her doc is playing it down , saying its not too important, just a bit of irritation causing fluid. everything I have read says it is serious, and may mean a very poor prognosis. I am worried, and not sure whether to worry her at this point, she has enough to think about. Amongst other lymph node mets, she has cells in the mediastinal node. love to everyone, Kim
Hi Kim - Im so pleased she is feeling ok (…well as OK as you can be ) about it all! Im on week 4 - which is a week off chemo! I have a little snooze in the afternoon, but otherwise feel fairy normal (whatever that is!!!). Please prepare her for the ‘hair’ - mine started to fall out rapidly a few days ago and so, amongst tears and hugs, my husband shaved it all off. It was horrid - but I was prepared with a new wig (starting to like it a bit now) and hats.
Sorry I cant help with the pleural effusion - hope someone out there can!
The Hickman Line is a godsend!! I wish I had had one during my first lot of chemo two years ago. Not a great look, but I asked for it to be as low as possible and the tube just tucks into my bra. I keep a tightly fitted ‘vest’ on day and night that just keeps it tucked in and safe - I dont want to turn over and pull it in the night!! M and S do a good selection!
My Best Wishes to her… and to you!!
Hi Sarah - Yes, my kids dont like the ‘no hair’ look either. So i cover up too.I think it makes us look like we are ill and advertises it. They are aware - and donlt need to be reminded!! Mine are 15 and 11. How old are yours?
Hi Linda 999 - Hope the new hair cut going down well.Nice to have it short for the hot weather??
Hi Laura 64 - I think we have exchanged posts on another thread. I do hope you are OK. It is frightening, but I have just had a fab day. So do hope you can find something that gives you a boost soon?
Hello ladies new + old
just a quickie to apologise for my absence on the thread I’m sorry if I’ve caused concern. I did do a massive post just a few days ago + it got lost in cyber space (I’d even took notes coz there’s so many of us on here now lol!). I’ve had a hectic few weeks, dan been ill + permanently at docs with him, been away to Edinburgh, had loads of social stuff too (made the most if feeling well before last weeks chemo) so just haven’t had a
min. Have been Reading though + waited for a time when I had a good half hour to catch up with everyone. And then the post goes AWOL!!
Anyway I promise to catch up over the next few days. The fog is lifting after last wks chemo + I’m off to the races on sat so I’m currently trying to find a suitable outfit with a high enough neckline + sleeves to cover the picc line. Oh and in a big enough size to accomodate my ever growing backside- no easy task I tell you
love to you all
tina xx
Hi,
Gingerbud, I was trying to see you on Telly,matching your photo.LOL. I hope you are having a good time at the races. I have been selected for the parp trial. I hope it works. I am getting waves of fatigue . Not any chemo at present,that worries me.I do have to take cocodamol for chest pain intermittently.
Hi Tina - nice to hear you are AOK!! Hope the races were fun - what a day for it!! Wonderful! I have seen on another thread that you are worried about some of your symptoms. I do hope you managed to forget all of this today and enjoy yourself and then ask the medics to look at you! Fingers crossed, you had such good news recintly!!
Hi Neelima - Im pleased you have some action now. I know nothing about the trial. We are all on such different treatments even though we have the same type of cancer - I dont understand!! Hope it works for you.
Hope the rest of you are enjoying the sunshine. Im loving a week off chemo! Back to it on Monday. It is coming round too quickly! Spending some one to one time with my youngest whilst my eldest on an exchange in Germany! It is really nice - ‘quality time!!’, ive even played darts today!!
Hi All
Can I join you ? I was diagnosed with secondary TN June 2010 6 days after giving birth to my lovely son who had heart surgery the day I was diagnosed. I had secondaries to liver on diagnosis. I had chemo x 6 and then mastectomy Jan and liver ablation which was really effective and scan clean at 3 months. Then noticed skin bump and have local recurrence and had more surgery to that and now radiotherapy. I was just beginning to be able to be Mum again to my 2 1/1 yr old and 10 month old and two older step children; 13,11.
TN seems to be treated very different in each person.
Jjane
Hi Jjane. Sorry you have the need to join us, but welcome! What a story! I am so sorry for all the trauma you and your family have been through. This cancer thing certainly seems to visit people who have enough to cope with already. I lost my Son, one of twins, a few years before my diagnosis. I do hope your little one is ok after his surgery.
There is such a wide variety of treatments , everyone seems to be on something different. I hope your radiothetapy does not sap your energy too much and remember, you are always a Mum to your little ones!!
Hi,jjane welcome to our group.Sorry to hear about your loss SadieL.
Today seems to a good day. Plenty of sunshine.I wish I had all the energy in the world to take my 11 year old out.XXX neelima
Hi all hope you are all getting on ok still waiting for my start date been a mess up with trials I’m sure my onc don’t know wat he’s doing lol hope you all ok have gd w end laura x
Hi Neelima, if your 11 yr old is anything like mine, they are more than happy watching films together. I have struggled today so, TV on, blankets out nd before i knew it two flims watched. I think i was really sleeping, but felt like we were doing something together!!
Hi Laura, still no start date!!! As you have doubts about your onc have you thought about a second opinion? Ive been to the marsden for an nhs second opinion. I send they all my test results now nd phone they for a chat a few says later. Works really well to have another brain working on it as it is sooooo complicated!
Ive struggled today with my tempetature. It dropped to 34.9 nd i was cold nd shivery. Im now up to 35.6 but this is still one degree below my normal. Im not rushing to phone the chemo helpline as they will drag me in. Anyone else had a two degree drop in temp? I had chemo yesterday, so hope it is just all setting down! Fingers crossed!
Another question. In two months my onc has refered me for a ct nd Mri scan to check if chemo is working. Should i be pushing for a bone scan too? Ive had spinal mets too, so would make sence? But dont want more radiation than needed!
