Lung Cancer

A support group for anyone affected by lung cancer to come together, share experiences, and ask questions.

Scanxiety = Cleaning Time

Ginajsy
Posted by

Hello All

Scanxiety must have set in, I have tonnes of holiday left to take before the end of the year, so lots of long weekends and today I have spent it cleaning.... oh the joy. I hate cleaning, yet I am finding myself taking the fridge apart to give it a scrub, wiping out inside drawers, scrubbing light switches. I have another 2 - 3 weeks before Xray and results, so at this rate I will be able to get Kim and Aggie round to inspect.

Of course there are lots of sit downs for TV and tea in between, need to keep the energy up eh.

I will be off in a minute to catch up on the horsey jobs as darkness makes it hard to clear fields on work days. 

I even did my Xmas shopping Sunday (online) and most have arrived and have been wrapped already. In brown parcel paper. I sore a post about just how much plastic is used in the making of wrapping paper, so I used up what I had and have moved on to that now instead. I am finding since diagnosis I have been doing a lot of decluttering and using up. It's all good though, slowly getting more room, saving a fortune by not spending for the sake of it and the clutter always drove me mad before anyway, but you always felt you shouldn't bin things 'just in case'. So there are bright sides to everything

How is everybody else doing?

Gina

There are no perfect people, only perfect intentions

♬I should've been more than this, I was gonna be something big, But I never did anything at all ♬ Dan Owen - Icarus
PhilB
Posted by

Now Gina

I feel I must support your new found domestic urges. Hence I will offer you a once in a life time opportunity to gorge yourself. The hoover can be found in the cupboard under the stairs. Dusters and polish will be left on the stairs and we will, with great consideration for your efforts, move out while you spring clean our house. No no no no, please dont thank us, we are more than happy to assist.

Phil xx

If you didn't care
What happened to me
And I didn't care for you
We would zig-zag our way
Through the boredom and pain
Occasionally glancing up through the rain
Wondering which of the
Buggers to blame........
Pigs on the Wing - Pink Floyd
Albondigas
Posted by

Hi Gina 

It's good to have a clear out and clean it gives you a feeling of domesticity and cleanses the soul. Tell Phil to do his own cleaning! 

I have had a similar epiphany today and cleaned and cleared all  my food cabinets. The freezer held some interesting things and next week is now "eat from the freezer week".

Xmas shopping is still in my future and anything horsey is definitely not going to happen. 

I lost weight at the start of my diagnosis and have not put it all back on ,so the charity shops are full of my cast offs and the wardrobes are looking better for it.

Albondigas 

If I leave no trace behind in this fleeting world 
What then could you reproach? 
                                                       from   Genji Monogatari 
PhilB
Posted by

You cut me to the quick Albondigas

Have a great weekend.

Phil xx

If you didn't care
What happened to me
And I didn't care for you
We would zig-zag our way
Through the boredom and pain
Occasionally glancing up through the rain
Wondering which of the
Buggers to blame........
Pigs on the Wing - Pink Floyd
chellesimo
Posted by

Hi Gina

I only said to my other half this morning, that I was going to buy brown paper to wrap the presents this year, as it seems that a lot of my Facebook friends have taken to this idea. He pointed out that he hopes they are are tying the presents up with string, as using cellotape will make it non recyclable. I quite like the idea of the presents being old fashioned looking in brown paper tied with string, so might just give this a go, save a little bit of the planet along the way. 

Good luck with your X-ray and results. I had my X-ray last Friday, and thankfully still remain stable. I was very impressed with how quick I was seen last week. I am so used to the clinic running hours behind that I was quite taken aback to be seen and home by lunch time.

Decluttering always makes me feel good. My Mum was a hoarder, although you wouldn’t of known as her house was immaculate. However when she passed away we realised that she kept everything. It was interesting to find her old diaries, old payslips, photos, a cut of my baby hair, baby records etc and laughed at the amount of chocolate she had hidden at back of cupboards, most out of date. My youngest daughter takes after her Grandma, she keeps everything, but her room infuriates me. Now that she’s 18 I’ve had to learn to close the door and not look in there, it’s her responsibility now, but it’s so tempting.... 

Have a good weekend, hope you have your marigolds 

Chelle 

Ginajsy
Posted by

Ahh Phil as ever your kindness and generosity knows no bounds! Always thinking of others aren't you? 

Albondigas he is a cheeky S&d isn't he?! Must have been a day for it yesterday. Maybe this weather, it's set to get cold again tonight onwards. So the pre winter hibernate clear out. Oh I often find stuff much out of date at the back of cupboards. I go by the sniff and look tests more than the sell by dates though.

Chelle I did use cellotape ops. But they do look good in brown paper mind. No doubt I will get told I am being tight/boring by my family. I ran out of cellotape the last couple of birthdays so packing tape it was! But the string is a good idea, good thinking by the hubby.

My gran was similar with the keeping things, though she did seem to miraculously clear much before she passed. I suspect she knew her time was coming. Though she was fit and well till a short but terminal illness at the end out of the blue (not cancer)!

The joys of teenagers, I still remember being very territorial over 'my room' as a teenager and wow betide an elder entering the inner sanctum. A wise choice to close the door and turn a blind eye!

That is quick, you get Xrayed and results the same day do you mean? I got sent an Xray card in the post with a letter to day go for it in the week before my results which should be early December. I chased a week or so ago for the results date appointment and that is the 4th December. I have been mulling over going for my Xray this week coming as that's my three month since last scan date and because I feel like there is growth (I can feel what I am sure is  pressure on my trachea and noticing when swallowing when head is turned (i.e when lying in bed) - it had been pressing on my wind pipe before treatment). I figured if I am right they will likely want me to have a CT once they have seen the Xray and going a week sooner would give time to organise that and have the results read in time for the 4th. Though I am aware it could just be scan coming up anxiousness of feeling every little thing, but also aware, though I do need to ask what grade the tumour is, that the respiratory man seems to think it grew within about six months to quite sizeable, so not keen to leave it too long in case.

I invested in a soup maker as part of my eat healthier drive and my aversion to sandwiches since my chemotherapy. I have to say it is a lovely little gadget and I feel much better for homemaking soups (not managed the rolls to accompany it yet). I used to take homemade sandwiches to work, but found they were boring and the same week in week out. Now a soup batch per week. Today's however is not that nice and I am not looking forward to having to eat it the next few days, but hey ho I do not like waste and will know not to try that recipe again.

Gina

There are no perfect people, only perfect intentions

♬I should've been more than this, I was gonna be something big, But I never did anything at all ♬ Dan Owen - Icarus
chellesimo
Posted by

Hi Gina

Yes I got my results of my X-ray the same day. I have alternate X-ray and ct scans. The ct scans are usually a couple of weeks before the results, but when I have the X-ray I just go along half an hour before my oncology appointment and get it done. The results go straight onto the computer and are ready for when I get up there. 

I would get the X-ray done this week. It is probably anxiety making you think there is something there, but best to get it checked if only to put your mind at rest. I know I always feel different aches and pains before my check up, but at my last scan I had convinced myself that it was going to be bad news because I didn’t feel anything was wrong! How crazy is that, but that is how our minds play tricks on us. I will keep everything crossed for you. 

Chelle 

borderc
Posted by

Hi Gina 

Hope your still going ok and all your spring cleaning is out the way, When reading this thread I was surprised how long  u have to wait getting your X Ray results, when I have an X Ray it goes on the system and within a matter of minutes my oncologist can view it as it’s all done electronically. I know all about getting anxious before scans but I always feel that we know our own bodies to be aware that something is not right, so yes I would get your x Ray early then if a ct is required they can get you booked in before your next appointment Though with my primary, lung I don’t get many symptoms from that area all my pain symptoms come from my secondary adrenal glands tumours, I’ve not been impressed with my last 2 ct scan reports as they have been reporting the size of the lung tumour so sizes can be compared but all they mention on the secondaries is bi-lateral enlargement on both adrenals so yes, this tells me they are growing but as they aren’t doing any measurements there is no information of how much or how quick the growth so I’ve requested my oncologist to get them to review my last two scans to have measurements added on, hoping they have been done as in clinic next week 

Enjoy the rest of the weekend and take a break from the cleaning 

Love Margaret 

Albondigas
Posted by

Hi Gina and Margaret 

I'm beginning to worry as I have not had an x-ray at all since before diagnosis and only 1 ct scan since op,chemo and radiotherapy! I am waiting on a ct scan after 4 immunotherapy treatments and that will be a challenge as the hospital radiology department leave the phone on mute and merely shrug when you turn up at their door to chase an appointment. 

On a brighter note the " eat from the freezer week " consists of

Beef,shallot and mushroom stew in red wine 

Elephant bean and chorizo stew in tomato sauce 

Sausage and mash

Leek and cheese quiche with ratatouille 

Pork fillet medallions in Pedro Xeminez sauce

Chicken , ham and leeks in cream pie

I shall eat out on the seventh day 

Albondigas 

If I leave no trace behind in this fleeting world 
What then could you reproach? 
                                                       from   Genji Monogatari 
borderc
Posted by

Hi Albondigas 

Hope you doing ok, Throughout both my chemo’s I had XRay every 3 weeks before each cycle followed by ct scan after 4 cycles, since being on immunotherapy followed the same pattern X Ray every 3 weeks and ct scan after every 4th treatment, must admit I feel lucky compared to your hospital as I can always get through to ct department and are always helpful if I need appointment time changing 

I did see on the other thread you was thinking of having a private scan as your hospital wasn’t sure if you could get the ct done in the next 3 weeks any updates on that, it’s really not on that this should be happening. I think when we are diagnosed with cancer it’s a postcard lottery on which hospital trust you are under, some are excellent some not so

Your menu for next week sounds delicious, are you taking bookings for sausage and mash night that is one of my favourites 

Good luck when you do get your scan keep us updated

Love Margaret 

Albondigas
Posted by

Hi Margaret 

You are welcome any night especially sausage and mash night .

I am feeling good and will wait for a couple of weeks to see if they ring for a scan before I go down the private route. My private oncologist knows my state oncologist well so they can liaise if necessary .

I think I would be concerned with that many xrays as they are not supposed to be good for you (says the person with incurable cancer!).

Stay safe

Albondigas 

If I leave no trace behind in this fleeting world 
What then could you reproach? 
                                                       from   Genji Monogatari 
Ginajsy
Posted by

Chelle

I am sorry, I meant to say during my last ramble excellent news that your results were stable. Thank you for clarifying re you're results and Xray being the same day. 

Thank you Margaret and Chelle, I shall go this week for it, as you both say it is likely my mind playing tricks on me. I am not sure why they do it like that over here, we are less modern and are actually planning to build a new hospital, though it will be some years before it opens. Maybe this is why we seem a little backward compared to most. I am sure if there was a need they could be available instantly. Maybe the delay is to give the oncologist time to interpret the results and put a plan in place if treatment is needed?

Thank you, no housework today, lots of slobbing binge watching. 

Margaret it is frustrating when they do not report sizing etc, as this is what is important to us and something we can understand. To make you laugh, after my PET, the respiratory man was showing me images talking through the results. Of course my lungs were part of then he started discussing the polyp in my bowel. I could see the almond shapes on the screen, and I was far too embarrassed to ask if they were my buttocks or my lungs he was showing me! I did say a couple of minutes later when he went back to talking about my lungs managed a timid so this is a picture of my lungs? (it was).

I am glad they are going to get better reports for your last two scans for you.

Albondigas, I'm really disappointed  that you are not getting checked regularly. As Margaret says there does seem to be variations.

Like Chelle I have been told it will be alternating CT's and Xrays every 3 months the first year, then if all is well I think it goes to every 4 months and so on.

Once diagnosed, I had an Xray just before starting treatment (this was 2 months since diagnosis CT), like Margaret I had 3 weeks of treatment and a further chest Xray. I did think this was a bit much especially as they could see the 'cone scans' from the daily radiotherapy sessions.

After that it was a CT two months after chemoradiation finished. Now it's three months since that CT for an Xray

You really shouldn't have to consider paying to go privately just to get the scans that are needed. I do think something every three months is what people should be getting, maybe changing depending on the grade of the tumour.

Gina

There are no perfect people, only perfect intentions

♬I should've been more than this, I was gonna be something big, But I never did anything at all ♬ Dan Owen - Icarus
Ginajsy
Posted by

Margaret - good to see that you have had your next infusion approved and looking forward to planning more in 2019! Did you get your answer on the growth sizes of the adrenal gland secondaries?

I went to help to quit Monday and she asked how it all was. I had a bit of a boohoo melt down, ops poor woman. Felt good to get it out though. I told her why I felt anxious and she knows my lung cancer nurse well (the one I have said I don't bother to contact as the first time really struggled to get hold of and second time she was on holiday, I left a message and never received a reply). She must have phoned her as I had a good old it's a hospital caller (they all start with the same three numbers here) missed call as I was driving this morning.

I went for the Xray this afternoon as I was in the hospital anyway for a dermatology review, so it was a good discreet time to get it done (not mentioned to work that it's check up time as whilst well meaning, I cannot face being bombarded with questions about it all when I am jittery about finding out myself).

So now I am hoping that those three little digits don't flash up on my phone for the next few days.... though I never did bother to try and return what I assume was the lung cancer nurses call (it was before my Xray so can only have been her).

P.S. Xray lady did ask if I was going straight up for results after Xray, so it does appear that it is normal practice here too to have the Xray and straight to oncology. I explained no my appointment was in a couple of weeks but I'd come a week earlier. So who knows why the gap.

Gina

There are no perfect people, only perfect intentions

♬I should've been more than this, I was gonna be something big, But I never did anything at all ♬ Dan Owen - Icarus
Albondigas
Posted by

Hi Gina 

Sounds like you may be being stalked by the nursing professionals . It can be annoying when people don't ring back but then suddenly want to be in touch  -  but probably not sinister!. Stop worrying and ring the poor woman back, you just slipped through the net . ( I have just described  to my  hubby a short rain shower we have had as  -  fish pandering! ).

I can also spot phonecalls from the hospital as they come up onscreen with a 13 digit number .

Hope xrays are ok and ask them why the gap. 

Stay strong and prosper ( mixed metaphors and inferences).

Albondigas 

If I leave no trace behind in this fleeting world 
What then could you reproach? 
                                                       from   Genji Monogatari