Some of you ladies probably know I’m getting some SABR radiotherapy soon for a liver met that has progressed
Well I pitched up in Birmingham today expecting the usual CT scan routine....but no...I was clamped in a blow up affair and my tummy compressed to inhibit deep breaths then I was injected with contrast..had a 3D and 4D scans...then tattooed on the reference points and photographed and a video of my breathing done!!!... bloody hell I was shattered...tried to be brave but did cry a bit...not that it was particularly uncomfortable..I was feeling sorry for myself and thinking..what the hell am I doing here?
Just to cheer me up I have to have an MRI with contrast tomorrow then that’s the imaging done..start radiotherapy on 25 th
Just want it done and move on...hopefully in the right direction
Have any of you ladies had this?
Barb xx
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Barbteeth
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Your oncologist is up to date on the latest advances. SABR therapy has helped many patients with single or few soft tissue tumors. It's not a pleasant experience but hopefully it did the work it was supposed to do. I've never had it but am happy to know that it may be useful for me as a therapy some time in the future. Hope you had a nice cuppa to calm your nerves.
Yes hope it succeeds... I just hope the side effects aren’t too horrid
I’m a tough old girl though..used to getting knocked about by horses and I’m reasonably fit...also I’ve stopped the Ibrance for the duration so hopefully my bone marrow might be in slightly better shape
I’m not moaning..in fact I’m pleased I’m able to have this...not heard from anyone on here who’s undergone this though
Hi Barb so sorry you have to go through this and feeling low. I still manage to do what I want through the tiredness but it only takes something to happen and I get overwhelmed by how scary this is. I had a bad fall in the garden and cut my head open showing my skull. When we got to AE they rushed me through at record speed worrying about infection. 5 hours, 7 stitches and an MRI later I was sent home on antibiotics. I sometimes (very rarely) manage to forget the seriousness of it all and then it comes flooding back. Having been told I’m NED is great news but how long it will last is anyone’s guess and could change very quickly. It’s day by day and when I’m told to stop worrying ( by specialist none the less) I fluctuate between wanting to hug him and smacking him in the face 😂 get back on that horse and build up your strength. Sending love x Anne
I haven't been through that but I remember being manhandled and tattooed for my radiotherapy for my initial bc. If you weren't expecting it and hadn't been given time to get your head in the right place, it must have been horrible.
Actually it was probably best that I didn’t know as probably wouldn’t have slept last night...anyway I’ll forget it for now...just have to have an mri tomorrow but that’ll be a walk in the park compared to today’s delights!!
Thanks for your support...the whole thing was surreal and by the time I left the hospital it was 4 pm and I’d not eaten since the day before so felt weird..have made up for it though!!
Lucky you re weather...we’re having the wettest June on record...persistent rain and many floods...and cold..ugh
I’ve organised an afternoon tea on Saturday at mine for my horsey pals was expecting to sit in the garden...no way!!..even if it stops raining the grass will be soaking
Annoying..I’m doing Pimms and cakes sandwiches etc so we’ll have fun
I had an MRI last Friday and the worst part was definitely dreading the canular and the nurse did it first time, so that was ok
I fell asleep during the MRI , it was the loud noise. We used to go to festivals like Reading but had to stop because the loud music sent me to sleep. I've slept through some of the world's best rock bands!
I also sleep through the MRI, weirdly I feel very safe in that machine I have come to rely on so much. I’ve even learned to dress for the occasion so I don’t have to wear the robes they provide.
They really should have told you what was going to go on. I would have torn my doctor a new a...hole! They can’t treat you like an animal. You have every right to feel sorry for yourself for a while but turn that sadness energy to making sure your doctors and nurses understand what they can and cannot do. I just met with a palliative care nurse practitioner. There are studies that show that people that get palliative care live on average 1 to 2 years longer than those who don’t. What they do is coordinate your care. Talk your doctor with your concerns if you want them to and if you are like me, I have about 6 different doctors all giving me medication so they meet with you to see if any of those medications will conflict with another. They also make sure your pain is being addressed and hook you up with the cancer center social worker, nutritionist and any other free support program that there are. Depending on what you both agree on they can come to your house monthly, biweekly or weekly. It is not hospice people get palliative care confused with that. They are just a service paid for by your cancer center to make your life better. I am sorry to hear about your liver. Can I recommend a book that has helped me a lot. It is called How Not To Die by Dr. Michael Greger. I think you will find interesting. Your library should have it. I will keep praying for you. I tell myself this scripture many times a day. “I will not die but live to declare the illustrious acts of the Lord”. I say it over and over again. You can google Dodie Osteen and see what scriptures she used to beat her liver cancer.
Wow sounds like something from Star Wars! Hope the treatment works for you Barb.
Hi Barb,
I'm so pleased to hear that the treatment went well, although it was uncomfortable for you. Let us know how you get on.
I don't know about you, but I am so tired of the rain! It's looking sunny and promising at the moment though, so maybe we will miss it today! What do you think? Enjoy your afternoon tea this weekend. I love having afternoon tea. Some friends are organising an international street fair party at their home on Sunday if it doesn't rain. My husband and I are planning to make American food for the event.
I've got to be in the mood to cook though! Picking everything up from Sainsbury's isn't such a bad idea if I am not feeling up to cooking! It isn't unheard of for me to get inspired and start cooking late at night when I should be going to bed! I wasn't always like this. I don't know if I told you or not, but I had a phobia of cookers from the age of nine after my brother and I were accidentally burned by hot oil. So for many years I was too scared even to turn a cooker on, let alone cook. I don't know when I finally overcame my fear, but I did eventually get over my fear and I can now function in the kitchen. But I still get flashbacks occasionally when I am in the kitchen and I refuse to cook with hot oil.
The sun is shining here too. It's such a relief to finally see that bright ball in the sky! I was really fed up and miserable all week having to walk dogs in the rain, so at least I had nicer weather conditions for walking today.
Enjoy the rest of your day and have a lovely weekend!
Ah bless you Barb. You're entitled to a cry every now and then. It sounds like it wasnt the best experience and who wouldnt think how's it come to this. I dont have any experience or practical advice but sending you big hugs and positive vibes. Hope today's better for you. Xx
I am so sorry you 're going through this, Barb. Mine hasn't gone to the liver but l appreciate your description so l would be more prepared if it happens (l wasn't at all prepared for the hideous st off love been through in radiology!).
I hope you have have a really good outcome and break all their records for living well and long!
Wow sounds intense! I can understand the tears. I cry during my scans. I am happy you are done and can put that part behind you! You will be in my prayers!
Oh at least I’m not the only one who cries during scans....I’m just so emotional about the sad state of my life ...cried when I got up this morning...trying to put mascara on...ridiculous!!
Who can blame us? We all have been through and go through a lot with this disease! I used to love the thrill of rollercoasters, but this ride can definitely take its toll on the emotions!! I have my three month pet scan today and the scanxiety is there. First one since I started Ibrance and Letrozole. Buy waterproof mascara and keep on moving Barb! We have a lot of life left to live!! Xoxo
Barb, it's not ridiculous to cry! I remember shedding a few tears when I saw some elderly people in town last year. They were hobbling along really old and frail, but still getting on with life. I envied them their longevity and wondered whether I would make it to their age.
Yes, I know what you mean, Barb. But when I see elderly people I think about all the things they have experienced and gone through in life and I want that too (just without the children). I don't want to die before I have sprouted a few grey hairs.
You're not being morbid, Barb. I think that way too at times and want to beat and defy the odds by living for many more years to come until there is a cure. I don't want to leave my husband, dad or brothers behind.
I wish you well with your radiotherapy, Barb. Let's hope it zaps those metastases and gets rid of them once and for all. I can understand why you would want to put your COC appointment on the back burner for the time being. Try to concentrate on the radiotherapy for now and then when that is over with you can move ahead with what is yet to come.
I'm off to a cancer conference at the education centre at my hospital tomorrow. I went last year too. It's a different chairman from last year, which alarmed me a bit at first because the chairman we had then was a fellow cancer patient. I hope he is still with us. Then next week I've got some tests coming up that Dr Callebout recommended. Once I get those results I will know more about what I can do to help myself.
Apart from this site I have no contact with anyone with cancer...apart from a chap with prostate cancer but we don’t talk about it!!
I avoid group things or Maggie centres etc as I want to feel normal not talking about cancer...I delude myself I know !
As for the brave the shave thing..loads recently on Facebook...it makes me angry...there’s no bravery it’s attention seeking to me...there are other ways to raise money...I sound a bit nasty don’t I?... but I hate the smiley face brigade...if they only knew!!
Well, I went to the cancer event I told you about yesterday and am back home again now. One of the first things I found out was that the chairman from last year died on Friday. I was upset to learn that. He was a great patient advocate. We were told that he wanted to attend, but he took a turn for the worse and died.
While it was good to hear about advances being made in getting our voices heard, a lot was being said about life "beyond" cancer. I told one lady that there is no "beyond" for some of us and that we have to live with this disease long term, but I don't think she understood what I was saying. Then another lady commented on how young I am (there wasn't anyone my own age there; almost everyone was elderly) and how she was diagnosed at the age of 70. So after weighing everything up I don't think I will attend again.
I have to agree with you about people who "brave the shave" to raise money and so on. You don't come across as being nasty at all. A lot of people are narcissistic. Why not do something less self-promoting when raising money for Macmillan or for other charities? Lately, my local pharmacy has been hosting cake sales to raise money. Last week was for cancer and a local child who has cancer, and this week was for Alzheimer's. I don't mind supporting those kind of events, but not the ones where people just want a pat on the back for shaving their heads. I find that insulting to the men and women who have lost their hair to cancer treatments. You wouldn't see someone walking around with a cannula in their hand or arm or wearing one of those oh so flattering hospital gowns we have to don when having a CT scan!
Shame the cancer event wasn’t enlightening...I’m afraid I don’t do stuff like that ....as I mentioned before....I avoid anything that involves cancer things....even the place where I go for my consultations has a big sign saying ‘Cancer Centre’ which still upsets me!!
It must be so much worse to be young....that feeling of ‘ being in the wrong place’ and ‘what the f... am I even doing here?... I totally get that
I’ve made my new appointment at COC next month after my radiotherapy finished...hope I don’t feel too awful...anyway I’m going...don’t want to put it off any longer...want to get going on the other drugs
I think I will take a leaf out of your book and not attend the cancer conference next year. I was the youngest person there! Most people were retired, and elderly. I thought there might be someone else around my own age there this time round.
I hope your appointment at the COC clinic goes well. I'm having my follow-up on 5th July. Are you travelling down to London or having a video chat? I'm doing well on the medications and will continue taking them. I had a bit of nausea recently, but that cleared up.
Dr Callebout ordered some tests for me after I saw him last month. I attended an appointment yesterday, and a nutritional therapist tried to do the blood test, but three of my veins collapsed. I had the choice of different hospitals or clinics to attend and so I chose one in Suffolk, so I wouldn't have to go down to London. When it didn't work out yesterday (she was very nervous and wouldn't draw blood from my one good vein I told her about) I ended up booking an alternative appointment in a clinic in Essex for next Monday. I had no idea things would work out like that. I was expecting a doctor or nurse to draw the blood, not a nutritional therapist (no offence to nutritional therapists). I was pretty fed up! I just hope this doesn't happen again on Monday. My veins are a bit tricky at times, as they are so small and hard to see, but I have never left an appointment after an unsuccessful blood draw before.
Before your blood test take a hand warmer...those things golfers use in their gloves and keep clenching your hand....very frustrating...I’ve had a few episodes when they’ve struggled getting blood and I feel like saying ‘ I’ll do the bloody thing myself!!’
Thanks for the tip. The thing is, the lady is not a trained doctor or nurse. She trained as a nutritional therapist, but found that many patients were also after blood tests, so she trained for that. But she was very nervous and wasn't confident when she tried to draw the blood. During one of her attempts she couldn't even break the skin. She had the needle angled all wrong, but I didn't want to make her feel bad about herself, so I kept quiet and politely thanked her for trying.
Hi Sophie sorry for jumping in but I have got scan attire down to a fine art and it makes me feel less like a patient. Leggings, vest top, soft bra no bones and no jewellery followed by floppy long top I can easily take off. They are happy with that and it makes it quicker.
I do the same thing. No need to change and I feel less vulnerable in my clothes than in a hospital gown trying to keep my skinny rear end from hanging out! Lol!
I am the opposite when I have a scan (I didn't have a scan yesterday; it was a private test). I normally dress up really smartly, with make-up and high heels on and then get into the hospital gown. But it is satisfying being able to get back into my own clothes again afterwards.
Oh Barb. Hugs coming to you from across the ocean. I haven't had this done, but I can imagine how you felt. I recall having the same "WTF am I doing here moment" while hooked up to stuff and in a machine. Horrible. I hope you are in your cost place now and ok. Faith
It’s awful....I have to plan the best time to do the maximum painkillers for when I want to be active e.g if I want to ride my horse I take big doses an hour before I get to the yard...then I do what I want to before they wear off
Strangely I don’t feel pain during yoga classes...must be the stretching and breathing that takes my mind off it
I’m sure the letrazole makes it all worse but what can I do?.. have to take it
I’m going for a Korean massage at the yoga centre this morning...a treat for me!!!
My hubby and daughters are off to the Lake District to climb Scafell Pike so I’m on my own for the weekend...have my fur babies for company though
Hi Barb. I had a friend who had colon cancer who had your therapy for his lung mets. He was delighted with the results. He'd be in the hospital a few days after (collapsed lung was a side effect), but he really liked not being on chemo. Said he felt great.
He used to go somewhere in London. I know they've been doing trials with it here, have not heard any results. But I haven't been looking either. I'm confident it will go well. He was crazy for it.
Barb, I’m sorry they didn’t prepare you for your procedure. Of course it felt surreal. You will get through this and move forward again. Ive been getting that wtf feeling as well. I had my liver biopsy two days ago and I’m waiting for results. Also I’m starting a new med on Monday.
Your girls tea sounds lovely. I hope the sun comes out for you! 🌞 Sending you hugs.
Nightmare isn’t it..had the final scan today..cried again!!.. the pictures were taken at the end of exhalation and I had to hold that each time for 15 second...that’s a long time when your lungs are empty..I was a good girl though
Hope your biopsy is what you’re wanting and new treatment is tolerable
Thanks Barb, I cried after it was over and I was in recovery. It’s so hard to revisit this nightmare again. I remember crying while getting rads in 2007. I was just so exhausted on every level with the entire experience. The best to you too!
Thank you! I had an idea of what to expect, and so there were no real surprises there, other than learning that Bob had died. I did have an inkling that he may have died. He was very ill when he chaired the event last year, but I was hopeful about seeing him again.
I suppose I was expecting the other cancer patients to be more understanding, but of course they weren't, as many have overcome the disease and are able to look back and speak about cancer with relief that they are still alive. When one lady pressed me about my disease I said it was metastatic and she said "What's that?" So I explained what it means. There was one couple there who were right at the beginning. The husband has only just been diagnosed, and he has not started treatment yet. I don't envy him and his wife that, as the beginning is horrible, as we all know.
I get questioned a lot and as you say, when we don't look sick people tend to think we have recovered or that we are not very sick at all. I actually have a really healthy glow and look and feel healthy, which is probably why people think I am in remission.
No I have never heard of that process. My oncologist has not mentioned radiation. I see him Friday and am going to ask him about that. You are very brave and hell if it hurts cry. I had two liver biopsies and the first one i had was relatively pain free and the second one hurt so much that i was really crying and I wanted to punch the radiologist in the face. haha - the crap that we have to go through!! Hang in there!!
Sorry late with my reply- have been reading all the posts. I have been down and haven’t been posting.
I am praying for you and sending hugs and love to you. You are so very brave and I admire your tenacity. I know how lonely and painful this damn mbc is and not just physically. I think I told you one of my ex’s had it done and it zapped the cancer. It is done here in NYC for quite few years already. I remember when it was new and “cutting edge” therapy. I know another mbc survivor who had it 2 years ago and she did well. You will do fine- the test was probably the worst part. It will work.
Thank you for your good wishes..means a lot when you ladies take the time to be of comfort
I’m so sad you’re feeling a bit down...I get days like that...I sometimes wake up and remember about the predicament I’m in and I cry...other days I’m ok so it’s totally normal to have periods of sadness ...panic fear etc
I felt rubbish yesterday but today ok so I went for a ride...nearly had an accident...bloody dog shot out of the undergrowth...freaked Bugsy out and he reared up then tanked off...god knows how I stayed on!!!... then he was silly the rest of the ride...maybe I’ll get killed coming off my horse and not mbc...good for thought although a bit morbid
♥️♥️Still have your sense of humor I see😍. Yes I am a mess this month-rashes all over my torso, couldn’t get my dr, having nightmares—ugh. This mbc shit is a daymare!?hate it. Finally spoke to him today- he spoke to an allergist- I am going tomorrow. Treatment suspended. Another damn pet scan he wants. I am so tired in every sense—need to cry and can’t. That’s me-in a storm I keep pushing them cry after. Ugh!
You are in my thoughts and heart. Thank you Barb for you♥️And being there♥️♥️
You poor darling...I’ve not heard of anyone having this vile rash...I guess it’s from Ibrance?
I’ve had to stop mine for 5 weeks while I’m having this radiotherapy done...I was expecting to feel better but I don’t feel any different..in fact I’ve had a couple of days with worse bone pain so I suspect a lot of my symptoms are from the letrazole...and I always blamed the Ibrance
Yesterday was hideous for pain but we had tickets to see ‘The Mousetrap’ Agatha Christie play so I dragged myself to the theatre ...fidgeted through the first half as I was so uncomfortable but wierdly the pain went away during the second half....probably because I was engrossed in the play...distraction seems to help
Let’s hope the doctor you see can help with the rash
Thanks Sandra—this has been rough month. Finished ibrance cycle and my torso is a mess with rashes. Dr was out 10 days-finally got him today- seeing allergist tomorrow. Doc wants another pet which I really am not wanting to do. All treatment suspended for now. It has stressed me so much. Not sleeping well even with ambien😳Just crazy head right now. Thank God I work cos I can focus on my patient and relieve my nerves♥️♥️I hate this shit.
I love you for being there for all of us and being you. ♥️
Frances
Hi Sandra,
Thanks for your support. When she emailed me later on to recommend another practitioner, she said she will ask to see pictures of the inside of people's arms from now on to see if their veins are OK! I was trying to avoid going to London for the test as it's such a pain to go there, and I had a list of alternatives. I had the pick of two places in my home county, a hospital or a physiotherapy practice. I should have picked the hospital.
Hi Barb. If your liver met has increased and you are un so much discomfort why haven't they tried changing your ibrance and letrozole? I have monthly blood draws one being ca27.29. once they saw bump in tumor marker they did a repeat after 1 week and saw another bump in marker. I had ct scan which saw liver lesion progression confirming that drug combo was no longer working so they changed both drugs.
Well the bone mets have been responding to Ibrance letrazole combo...just not the liver nodule so she doesn’t want to change my meds ...there is just one liver nodule at the moment so hence the radiotherapy
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Bone scan vs. PET scan
Abnormal CT scan of the head
Good scan news today ;-) 15 months in. 
