Little battle update ;): Good morning... - British Lung Foun...

British Lung Foundation

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Little battle update ;)

Gingerapple
Gingerapple
โ€ข56 Replies

Good morning all you dear peeps๐Ÿค—๐ŸŒป

I have been measured up and tattooed for a stereotactic radiotherapy starting first session on 22nd September at 10am on alternate days for 5 sessions. Hopefully it will work, otherwise a lot longer ๐Ÿ‘๐Ÿพpositive thoughts and prayers are with me, as a spiritual aid.

My blood clot incident has, up to now, not left any side effects, have oxygen up to 97%. I think I took away, though, maybe๐Ÿค”a right and left ventricle heart strain - moderate, which worries me a bit. If anyone knows anything about any of these two 'things' Stereotactic radiotherapy' and the 'ventrical' problem I would be more than grateful to hear about them, as I'm not into googling much anymore.

I appreciate you all and I hope you all have an easy breathing day๐Ÿค—๐Ÿ˜Š

Hugs and love, Spicy - and lovely- ๐Ÿ˜๐Ÿ˜‚๐Ÿ™ˆBev xxx ๐Ÿฅฐโ—๐Ÿ’

56 Replies
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Bless you Bev, I'll be thinking of you, especially on 22nd ๐Ÿ™

Gingerapple
Gingerapple in reply to peege

You're one of my Angel's, you give me courage, thank you!๐Ÿค—๐Ÿ‘๐Ÿพ๐Ÿ’

Good luck with it all. I'm afraid I do not know anything about it. I hope with all my heart that it all goes well. Take extra care x

Gingerapple
Gingerapple in reply to Suzie42

Thank you Suzie,

I'm going to have to do battle with the heart thing, too, going to be a busy life๐Ÿ˜ณ๐Ÿค”๐Ÿ˜๐Ÿค—๐Ÿ’

Suzie42
Suzie42 in reply to Gingerapple

Wishing you everything ! ๐Ÿฅณ

Hi Gingerapple,

So you have been tattooed, done with a CT scan and little reflectors and using a jigsaw of pieces to make up a comfortable head rest as well which will go on to be used as a mould to make a proper one piece custom headrest.

During that CT scan they will have mapped out the tumour relative to your tattoos. These will be used later to target the tumour precisely with the Linac (Linear Accelerator) machine.

You will be asked to change into a gown, you must not wear a bra or other metallic objects.

When you are laying on the treatment table, the operatives will physically push your body about to get you in the right position to align you up on the table, this is not an uncomfortable process. Next you will here them calling out a series of numbers, the precise positions of your tattoos, you ignore those numbers they are not for you to remember for any reason at all. Remember you MUST remain completely still.

The operatives will then leave the bunker (treatment room) and the machine will position itself, accurately to the for the first scan, then it will rotate around your body to other positions doing further scans. The machine returns to it's original first position to start giving you the first dose of radiation and move again to the second position and repeat the radiation dose.

At all times you will be monitored via a video and microphone link. The process can be stopped immediately if necessary.

That is all there is to it, the actual exposure times themselves are measured in seconds.

The first session will take the longest and get shorter as you become accustomed to what is required from you. 20/30 mins per session at first perhaps only 15/20mins later.

Totally painless except perhaps a little cramp getting off the table at the end. There can be a few side effects like fatigue or some reddening of the skin or even a little radiation induced inflammation. Personally I experienced very little fatigue for one day only and some inflammation that was dealt with by a course of steroids. They do recommend having a escort because of the chance of fatigue and not recommended to drive yourself either.

Like you I had 5 fractions (sessions) on alternate days and as you know has been, so far successful. I hope I have covered everything and if you have any questions at all just ask. Good luck with the treatment and hope you tolerate the treatment as well as I did.

Gingerapple
Gingerapple in reply to 2greys

Hi 2greys,

What a wonderful explanation and I see the picture in front of me now! I hope the actual 'zapping' doesn't take too long because I'm always so scared of moving! Hard on my body. But I will be brave and still. I'm a little worried about shortness of breath, after๐Ÿค”perhaps it won't happen? Fatigue is very normal for me. I really appreciate your explaining everything to me, I feel rather small in life when I think of the big things I have to do ๐Ÿ˜‰I hope to speak with you again soon๐ŸŒŸ๐Ÿฅฐ

2greys
2greys in reply to Gingerapple

There is no shortness of breath afterwards at all, in fact you will wonder if anything happened, wondering if the machine had broken down. Any of the commonest side effect of fatigue will probably not take place until after the third session, perhaps not at all even. You will feel no different than just having an X-ray.

Gingerapple
Gingerapple in reply to 2greys

Well that puts aside all my fears of that. Thank you so much 2greys, it's really good for me to hear this๐Ÿค—Have a lovely weekend ๐ŸŒŸ๐ŸŒปโค

Keeping you in my thoughts and prayers for a full recovery, sending you a virtual hug.

Ps if you do use dr google stick to the nhs sight then you would know what to expect. Nothing like a first hand experience i know but if you are concered about the proceedure it should give you some guidence of what to expect.

Gingerapple
Gingerapple in reply to corriena

Thank you Corriena๐Ÿ’

I will check out the NHS site. I kno we the procedure just wanted to hear from you all, get your experiences๐Ÿ˜Š

Big hug for you๐Ÿค—

Good luck for the day

Thanks Jaybird๐Ÿ‘๐Ÿพ๐Ÿท๐Ÿ˜Š

Morning bev, progress at last, go with the flow dont ask dr google, love the fact that 2 gs says it doesn't hurt lol. Take care of you love jane.

2greys
2greys in reply to chubby2x22

Correct, absolutely no pain at all, nor any sensation whatsoever. In fact you wonder if it was working or actually did anything.

Hi Jane, thank you, you're so kind. I hope you feel better now, let me know how your op went?๐Ÿค”๐Ÿค—๐Ÿ’

Thinking of you dear Spicy Bev and hoping all goes well on the 22nd. Lots of positivity coming your way.

Love and hugs ๐Ÿฅฐ๐Ÿค—๐Ÿ˜ Carole xxxx

Gingerapple
Gingerapple in reply to sassy59

Thank you, Carole ๐Ÿ‘๐Ÿพโ™ฅ๏ธI hope Peter's back is better today? โค๐Ÿค—๐Ÿ’๐Ÿท

sassy59
sassy59 in reply to Gingerapple

Thank you Bev, Peteโ€™s back is causing him problems but heโ€™s not letting it get him down. Take care xxx๐Ÿฅ‚๐Ÿค—๐Ÿ˜๐Ÿ’œ

Gingerapple
Gingerapple in reply to sassy59

Thank you, Carole, big hugs love to Pete๐ŸŒป๐Ÿค—๐Ÿฅฐ๐Ÿทโค

sassy59
sassy59 in reply to Gingerapple

๐Ÿ‘๐Ÿ˜˜๐Ÿ˜˜๐Ÿ’œ๐Ÿ˜๐Ÿค—๐Ÿฅฐ๐ŸŒŸxxxx

Wow stereo raidotherapy,i wonder if it comes with dolby surround sound and as much free popcorn as you can eat spicy fruit. :) i have no doubt that you will sail through the experience and eventualy reach a destination where tumours are bannished or made rediculously small and unable to do you harm.

Love and best wishes for uneventful sessions that you barely remember in the future.

Ski's and Scruff's x

Lol.....did I type that wrong? ๐Ÿ˜I am a strange one sometimes! Or...autocorrect ๐Ÿค”๐Ÿ˜„

If I'm thinking of you all here I shall definitely come through singing. Thanks for that, you two, you encourage me and make me laugh. Hugs, always๐Ÿค—๐Ÿ‘๐Ÿพโ™ฅ๏ธ

No your typing was perfect Bev,i was just playing with the word and if we mde you laugh thats good and our work is done. :) xx

Hope all goes well and all in your favour Spicy.

Sterostatic radiotherapy specificallty targets the tumour from many different directions to help avoid healthy tissue. The information leaflet with your letter should explain some :)

Well the ventrical problem that all depends on what your ventrical problem is. ventrical problems not good to have but hope you doctors can explain more about what is happening particularly with yours (sometimes you have to ask the direct question, the medics generally don't offer the information unless the patient asks.

Gingerapple
Gingerapple in reply to Bkin

Hi Bkin,

Thanks so much for your reply. I hope you're well ๐Ÿ‘๐Ÿพ๐Ÿ˜ŠI actually know about the ventricular problem, what usually happens, is that someone will eventually tell me about their ventricular problem and then I compare a bit, even though we're all different, I try to grasp a different picture than my own, it helps my soul. Some people explain things better and that's why I always ask. Doctors blabber and sometimes don't really answer, or they tell you you're dying......The Radiotherapy has also been explained at Christie's but I like to get the experience from other people, it helps me. I seem to have a lot of health problems at one time, cancers, blood clot, heart.....it's a lot to take in and especially when you live alone....trying to soften blows๐Ÿ‘๐Ÿพ๐Ÿ˜Š

Have a great evening ๐Ÿ˜Š๐Ÿ’๐Ÿ‘๐Ÿพ๐Ÿท๐Ÿท

Bkin
Bkin in reply to Gingerapple

Glad you are fully aware of things :) I could tell you my experience but its unlikely to be the same as yours. But of all diagnosis, I think Cancer is a pretty tough challenge to deal with, especially when one lives alone without any real support.

Take good care. I found the Cancer Care support through the hospital was excellent, they rang me quite regularly, they work closely with MacMillan so if you've not already had contact, do make contact with them. The thing is they are only supporting the Cancer affect on patients, emotionally, psychologically etc. Its a lot to deal with.

The lung and heart things are closely related one affects the other. My ventrical problem, resulted in angiogram, then medications afterward. Just that the left ventrical was closing and emptying out into right ventrical before it had filled fully. Years down the line I seem to be ok now, not even on the meds :) The body is very good at healing itself given the right environment care / self care, this has been my experience.

Gingerapple
Gingerapple in reply to Bkin

Thank you Bkinโค๐Ÿค—,

Now I feel so much better! You have given me your experience and there may be hope for me then, because I was feeling wretched and suffering a lot with up and down heart values, high, low, racing etc. I think I'm a little stressed and did too much yesterday, this may be why my heart is so chaotic today. I sometimes really do need to hear from other people๐Ÿ˜Š

I'm glad you're ok now. ๐Ÿ’

McMillans have been kind to me, but I have a lot of help here on the forum, too, the soul is sometimes wretched and I need all of you here, this is my support, too. You have also helped me greatly tonight, Bkin๐Ÿค—๐Ÿ˜Šโค

Bkin
Bkin in reply to Gingerapple

My experience was increasing palpitations, from 8 a week to 8 a day, some lasting what seems like 2 minutes, a very strange and worrying sensation when its seems to last so long and you wonder if / when it will stop. I was put on statins, asprin and diltiazem, I am not on either of those 3 now. Sure hope the meds can fix things for you as well. Take good care and don't overdo things.

x x

Thinking of you. Good luck.

Thank you Kitten-kat๐Ÿ’๐Ÿค—

Hope all goes well! ๐Ÿค—

Thank you once again madonbrew๐Ÿ‘๐Ÿพ๐Ÿค—๐ŸŒป๐Ÿคž

Youโ€™re welcome Gingerapple!!! ๐Ÿค—

๐Ÿ’ ๐Ÿ’๐Ÿ’

Hi Dear Bev, The very Best for the 22nd,. I have a problem with Left side Heart ventrical, Consultant says this is slowing my capability to have a good discharge flow of Air that also affects my Lung, I only have the Right Lung that works at 17% . Left doesn't work at all. I asked her "Do I see a Heart Specialist" she said No, we will monitor it, that was well before The Pandemic. Still no Monitoring. I do my Stats every Morning and my BP can be high, I can calm down after awhile to get a decent reading. See what Amy says on the 14th October, my First Face to Face Appointment. I also did Too much on Wednesday, though had my Oxygen on (24/7 now), I made a Fresh Salad, too much, I was gasping and poorly next Day. We have to Learn to slow Down to Tortoise pace.. So Take things all very Slowly as I'm sure you will Hun. Take Care. Stay Safe, Much Love. C. XXX

Good luck with it all Bev xx

Sending love and hugs, remember to pace yourself, a little every day, so you donโ€™t get too exhausted.

J

Good luck to you, youโ€™ve been thrown an awful lot to deal with, all at once. Scrambles the brain, not knowing what to worry about first. You will worry. Telling someone not to worry is a waste of time and a bit insulting but I suggest you find your own way to keep from panicking, very slow breathing helps me a lot, really concentrating on doing it regularly. Your mind will wander, accept it and pull back to the breathing. Panicking is easier but is so exhausting and so pointless.

One of the worst things about illness is the powerlessness which is what makes you panic. So......you canโ€™t control what what is happening to you, so control what you are able to e.g. your food, your reading, your breathing. See and talk to only those who โ€œliftโ€ you. Treat yourself to whatever you fancy and put the slap on......even if it is mainly hidden by a mask!

Thinking of you dear Spicy Other Bev ๐Ÿ I hope it all goes as well as these things can. Thank goodness for everyone sharing their experiences, somehow things are a bit less scary when other people have been through the same thing. Sending you lots of woolly sheep hugs ๐Ÿ‘ they might be rather wet and squishy hugs after all this rain but thatโ€™s part of the charm ๐Ÿ‘๐Ÿ‘๐Ÿ‘๐Ÿ‘๐Ÿ‘๐Ÿ‘

Hi Bev, ๐Ÿ‘‹๐Ÿ˜Š๐ŸŒบ๐ŸŒฟ๐ŸŒท๐ŸŒผ

You will be in good hands and you know you have us behind you thinking and rioting for you. Loads of love and hugs.

Cas xx ๐Ÿ™‹

Gingerapple
Gingerapple in reply to Caspiana

Hi Cas,

Thank you so much๐Ÿค—I'm glad you're all rooting for me, it makes me able to breathe better, physically and mentally ๐Ÿค—๐Ÿ‘๐ŸพโคYou're my best support!

I hope you're feeling better now, Cas๐ŸŒป๐ŸŒŸ๐Ÿ’๐Ÿ˜Š

Caspiana
Caspiana in reply to Gingerapple

โค๏ธ

Wishing you all the best for 22nd and beyond. We're all rooting for you.

Gingerapple
Gingerapple in reply to Ergendl

Thank you so much, that always boosts my spirits, hugs ๐Ÿค—๐Ÿ‘๐Ÿพ๐Ÿฅฐ

Good luck with the therapy Bev. x

Thank you my lovely ๐Ÿค—๐Ÿค—๐Ÿ‘๐Ÿพ๐Ÿฅฐ

Sending you love and hugs (((๐Ÿ’“))), will be thinking of you x x๐ŸŒท๐Ÿ’ฎ๐ŸŒธ๐Ÿต๐ŸŒน๐ŸŒบ๐ŸŒผ๐Ÿ€๐Ÿ

Gingerapple
Gingerapple in reply to Shirleyj

Thank you Shirleyj,

I'm glad of your hugs ((๐Ÿ’“))๐Ÿ˜„And the love ๐Ÿ˜Sending you back๐Ÿค—๐Ÿค—โ™ฅ๏ธโ™ฅ๏ธ๐Ÿ’‹

Love and hugs to you Bev, you will not be going into battle alone, will be with you on the 22nd in spirit. 2greys explained everything so well I am sure this must have put your mind at rest x

Gingerapple
Gingerapple in reply to Izb1

A...that is so sweet, I love not going into battle alone, I shall reach for your hand!๐Ÿค—Yes, 2greys did explain everything and that's why I feel so much better now. The first battle, I'm ready for it๐Ÿ‘๐Ÿพ

Love and hugsโ™ฅ๏ธ๐Ÿค—๐ŸŒŸ๐ŸŒป

You little warrior, we are all here for you, holding your hand x

Gingerapple
Gingerapple in reply to Izb1

๐Ÿค—โค๐Ÿ’๐Ÿฅฐ

Wishing you well for the 22nd and the sessions after. I'm sure that you will be in good hands at Christies. I hope that you get some answers for your cardiac problems too soon. Heaven knows you already had enough on your plate.

With love, Carole xx

Wishing you all the very best for your sessions starting on 22nd. Hope these do the trick x

Gingerapple
Gingerapple in reply to Dedalus

Thank you so much! Have a lovely Monday, in the sun๐Ÿค—๐Ÿ˜Š๐Ÿ‘๐Ÿพโ˜€๏ธ๐ŸŒป

Dedalus
Dedalus in reply to Gingerapple

Wish some for you. It's already a beautiful day x

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