Hello everyone, hope all feeling positive, it's hard though all the time.
Went to Salford Royal today for mask fitting. They soften the stuff they use and moulded it to my face, if you suffer from panic attacks I would think it's quite scary, because it's locked to the CT scan couch! They asked me to say if I wanted a break but it was ok, thought I may as well get it over with. Sorry for rambling on! Sending love and best wishes. Pam xxx
Glad you got it done. It’s weird being fastened to bed, I brought my mask home going to make it garden feature 😀 x
Hi Betty, how you are you feeling? Yes, it was very weird, the radiologist’s who did it were very caring. Glad when it was all over though, puts quite a bit of pressure on your head, doesn’t it. Take care Betty. Love Pam xxxx
I’m so pleased you didn’t find it too bad. I’m struggling at moment chest infection so on antibiotics. Think all side effects are here at once. Take care keep me posted xx
Sounds like you coped really well Pam.
I hope you've got some great plans for the mask when its over like Betty!When does the treatment begin?
Sarah x
Hi Sarah, hope ok. Don’t think I’ll want my mask! Immunotherapy this Thursday and radiotherapy next Wednesday. How are you Sarah? Sending love. Pam xx
Has the chest infection delayed anything for you Betty? Keep in touch.
Hope it’s gone well x
Hi Sally, how are you? Feeling ok, no after effects thankfully. Glad it's over, was better than I expected, just uncomfortable with pressure on head and with it being fastened to CT scan couch, very claustrophobic! Have you had it done Sally? Is everything alright with you Sally. Sending love, Pam xxx
Morning Pam. Another milestone! Well done. I will be thinking about you on Wednesday. Will be in touch. Love and big hugs . Danni xx
Hello Danni, lovely to hear from you. Yes relief it's over, quite uncomfortable but that's about it. Took a couple of hours. Worst part having it moulded to your head and attached to CT scan! quiite claustrophobic. How are things going Danni, did you speak to anyone about counselling? When are you seeing the Consultant Danni? Keep me posted. Love and hugs, Pam xxx
I recently raised the issue of describing it as a 'mask' in a research committee as we've all got used to the idea of a face covering for covid so it can seem even more scary despite its good purpose to shield.... hope you find a way to cope with it... good luck.
Yes I think you’re right Janette, it does make it a little more scary with covid masks. Yes I’m coping ok, we have to don’t we. Best wishes Pam xx .
We do - finding a way to cope and get on with life between appointments is really important so find little things to enjoy if you can... keep on keeping on...
Will do Janette, you too. Xx
I am claustrophic and take a small amount of Ativan for the mask fitting and the Gamma Knife. I find the mask comforting as they apply it, kinda like a facial! The bolting down is weird but I have gotten use to it unfortunately. Glad you got through it! I brought my mask home the first time and was going to use it for Halloween but never did. I just finished 10 sessions of radiation to a lymph node and they use a molded comfy thing that my shoulders and arms fit in! That too got left behind! Next week I will have a molded liner for my adrenal gland. It is nice knowing you are laying on your own germs and not others!
Hi Seaspray, yes I agree it’s quite claustrophobic but yes felt quite snug and cosy! But the bolting down I didn’t like. I’m puzzled why some bring the mask home!! Why! Must admit would look real scary on halloween! Things are moving on for you and that’s great. Best wishes Pam xx
Hi Pam
Pleased to hear that the mask fitting went ok and not as bad as you thought.
I was very pleased with the meeting with my oncologist, she was forthright but had humour and lots of empathy. She said that whilst the cancer in incurable she had a good range of treatments to give me the best opportunities. I will have pre treatments tests in two weeks time then all being ok, treatment will start end December/early January.
She is also arranging X-ray and scan on my leg as still painful and swollen.
I was hoping the cancer treatment would start earlier but she was so reassuring that I came out a lot happier.
Hope all things go well for you.
Rob
X
Hi Rob, glad things are moving for you. Yes, the fitting was ok, I seemed to cope with it, we do don’t we, got no choice. Your oncologist sounds really nice and a good sense of humour. Dr Summer is like that, quite funny at times, must help them to have a sense of humour working with poorly people. Hopefully she’ll get to the bottom of your leg. It’s nice to come away happier isn’t it Rob. Sending love and keep me posted. Love Pam xx
Had 10 daily radiotherapy sessions with the mask Loimie, I too found it very claustrophobic. It only takes a few minutes but had to imagine doing something nice to get through it. Tell the staff to release you asap. Good luck, it's worth it !
Thanks for your reply Lambrett, it's nice to know we all get through it and it's worth it That's a lot of radiotherapy, Consultant thinks I'll just need one, so hopefully she's right. To be honest felt quite warm and cosy! You take care and thanks again. Xxxx
So proud of you for handling this so well. Your words will ease the way for someone who comes after you.
Thank you so much for your kind words Denzie. We have to just get on with it don’t we. It can be a lonely path, but with all the positives on here it’s worth it. Yes, people after us will be to at ease. How are you Denzie? Sending love. Pam
Hi Pam. Everybody here is so amazing and it's great that you have all of this support. The friend I told you about who has had Immunotherapy told me that her tumour's have shrunk which is so encouraging for you and other's. They stopped her Chemo at the beginning of Covid for 8 month's and her cancer spread. So frightening. It was so wonderful to hear that the Immunotherapy has slowed it and she is due to have Radiotherapy. We both found out we had lung cancer within a month of each other but mine was operable where hers wasn't. I felt guilty! Just a shame that I was left for so long with the tumour on the Xray and no treatment! I spoke to my G.P. and he is going to send me for test's because he is "worried "! Here we go again! Will tell you more later as I'm not doing well today. You are doing so well, Pam. Thinking of you and sending love and hugs to you and to all of you amazing people. xxxxx
Hi Danni, yes, everybody is so amazing. Your friend is doing so well, give her my love. I'm glad immunotherapy is working for her. Don't feel guilty that yours is operable. It's good that you're GP is sending you for further tests. Stay strong Danni. Chat soon. Love Pam. 💕
Hi well done hope all goes wellxxx
Thanks Red, I appreciate that. I feel ok about it now, we have to carry on don't we. Sending love 💕
Hi Pam well glad it's done and dusted. Well done sounds scary though. So you start the Radiotherapy next week 🤞 all goes well and you don't have any side effects from it. Hope your coping and getting some support through this difficult time. Though I must admit everyone on here is so supportive a great group to belong to. Take care xx 😀
Hi Ollie, how you doin? Yes, I'm glad this first part is over with. Thinking I might get a bit worked up about radiotherapy. I only need one blast of it up to now. You've had such a lot and chemo as well, don't know how you cope. Did you have side effects? When's your next session? Just having a second breakfast!! These steroids are making me eat and eat! I've put weight on, which is good, I was only 43kg, whatever that is in 'old money', now I'm 47kg! Thankfully I've not puffed up! I'm so glad I found this group, they rally round and are always here for everyone, and you know you're not alone. Got bloods and covid swab today and immunotherapy tomorrow. Keep in touch Ollie and whenever you need a chat I'm here for you. Sending love. Pam xx 🥰
Hi Pam when I had Radiotherapy it didn't hurt at all but I had side effects after treatment finished but I was forewarned. Help was there at hand and Radiotherapy worked for me and hopefully will work for you also. Like you I'm on steroids for the lung inflammation Omg I'm always starving and eating piling on the weight 🙄 tomorrow I start chemotherapy maintenance so on dexamethasone for a few days so more eating. Wish I knew how to turn off the need to eat 😆. Hope the immunotherapy went well. Yes I agree this is a great very helpful group. Take care keep in touch 🤗🤗 xx
Hi Ollie hope your keeping well, and it's reassuring that I'll be ok with radiotherapy. There a while today, immunotherapy was only 15 minutes but had Zoledronic fusion as well, tiring day isn't it. I can't stop eating!! Take care Ollie and chat soon. 🥰
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