Cancer Support Thread 84 - gently crunching our way into autumn

[mowly77]

New thread as old one about to be full. As those who have been around far longer than me have said: Welcome. Pull up a chair, help yourself to a biscuit, a large gin, or a detox tea. Or all three. This is a supportive thread for anyone with cancer to discuss how things are going, ask for advice etc., vent, scream, or discuss life in general.

Please feel free to join for support if you are going through tests as well, hopefully they will come back all clear, but if not we are here to hold your hand through the journey.

It is difficult - I think partly in my case it's the shock of discovering I'm not invincible! I've found having plans helps - even if half of those plans are hospital related appointments!

My Mum was a fantastic knitter - what a wonderful thing to be able to do for your Christmas gifts.

My plan was to write Christmas cards and wrap gifts before radiotherapy started at the end of November, so I'm still aiming for that! I'm also planning a holiday - so that's keeping me busy too. Hope you have a good week.

@MrsPnut I claim the WUP crown and you should just stop competing and slink back into the shadows. No further nonsense please! Do you have to have a bone scan? How long will they take to work out what is happening? Thinking of you and that fear of things escalating which is so familiar.
I am confused by anniversaries. There is Cancer no 1 diagnosis, or the day I was officially NED. Then there is cancer no 2 diagnosis and I am waiting impatiently for the day I can be NED for this one too. Maybe I will just celebrate being warm and dry with no broken limbs. Today DH has brought back delicious Bakewell slices to have with coffee. My joints are quiet this morning hallelujah! Lots to be grateful for.
@ajandjjmum that's a good idea to get ahead on cards and presents. I am going to tell the youngsters I don't want anything costing more than a tenner this year. I really don't need anything except a nice up to date photo of them doing something they love. Where are you going on holiday? I want to go on a traditional Edwardian convalescence trip to a mediterranean resort. I might take my lovely artist niece as my companion and we can have a Room with a View adventure where she falls in love with a handsome young man and I am her chaperone.
You are not a fraud by the way. You have seen the mountain lion in your fridge and run away just like the rest of us.

Sending warm wishes to all
Top x

That's a lovely post Top - glad you're having a good day. My DH shows his love by buying/making cakes - it's really not doing my waistline (or lack of it!) much good, but it would just be rude not to eat them!

We made a bucket list of adventures a couple of years ago, and I was quite cross when it was interrupted. We are planning to go to a wedding in Brazil in mid-January, and after spending some time with everyone, we are disappearing to the Iguazu Falls for four days. We have two days booked in a fabulous hotel at the Brazillian side of the falls, but daren't extend as the price has doubled since I booked. So do we stay elsewhere in the same town for a couple of nights, or stay for the extra nights on the Argentinian side. Decisions, decisions. A Room with a View sounds perfect - especially with good company.

I really don't mean to be flippant, especially when so many people are having such a tough time, but I need to plan and have things in the diary. The fact that my planning scan was delayed, so my radiotherapy will be, is not going to stand in my way! The oncologist agreed.

Hope the hip thing turns out to be benign MrsPNut. I did have a hip thing show on mine when I had lots of pain as well and they said it was bony Island hip thing, well a more precise medical term. Which apparently is benign but means weak bones.

Back from holiday now.

My plan to get my house on the market so I can buy a bungalow with DP got derailed by this diagnosis, I'm desperate to get it back on track, so we can move forward and at least dream of being in our new home together in the summer.

Oh, and my ExMIL doesn't think I need Radiotherapy because her friend's hairdressers neighbour (something like that) didn't need it. So I'll call my oncologist later and let him know he's wrong 😂

Oh dear 😂

@MrsMontyD Got to love the opinion of the uninformed amateur🙄
I'm on full on distraction mode, I've got a scan on Thursday and was quite calm about it but as the date approaches I become more convinced that bad news will follow.
When I was sat outside Greggs trying to sedate the anxiety with sausage rolls(classy I know!) I decided I needed to take action and brought myself some new pens and a furry pencil case. Colouring has always been a good distraction for me.
I've also booked into Yoga tonight and belly dancing on Wednesday because shaking your hips while wearing jingles just makes you smile.
My sons school HSA helped by announcing a surprise bake sale on Friday which will keep me busy. And I've got knitting to finish and my greenhouse needs insulating so I should be able to keep busy.x

I'm also feeling on edge because I'm meeting the consultant tomorrow to discuss whether I'm having more chemo, I was told 4-6 and I've had 4, but I'm worried about the effect of the chemo on a cardiovascular condition I have, and I was borderline as to whether I'd have it in the first place, I possibly wouldn't have for either of my two cancers singularly, but did because I had two, but it feels scary to decide to stop. I'm also rejecting radiotherapy because a meta analysis of my grade and stage says it only makes 1% difference, and the consultant says it makes no difference to overall survival. But I'm mostly feeling on edge because I think my BRCA results might be back.

Speaking of anniversaries, what do you all count as your day of diagnosis? I am confused and always stumble over when I was diagnosed and then worry people will think I’m lying (like I’m bald for fun!).

I had the scan and CT in early May which showed the likely cancer but it wasn’t confirmed until after histology in June! Not that it even matters I suppose.

Im trying to start my Xmas wrapping now but I’m so uncomfortable I cba to do more than a few.

We are booking our holiday this week. The oncologist has said it’s fine as I’ll be 3 months post chemo by then, but I’m too scared to press book. Like I’m tempting fate. Should I wait until my end of chemo scan? Should I book it anyway as presumably even if something showed it’d be dealt with my the inhibitors for the time being now?! I just don’t know. Cancer has made me so dithery where I’m normally very impulsive.

I appreciate this is very unimportant in the scale of things but I've just had my nails done post surgery, do I really need to have bare nails for radiotherapy?

I went on holiday in the UK and I booked it 3 days in advance, then extended it by two days twice because I was so uncertain about things!

I had 3 weeks of RT and had a Shellac manicure the whole time.

MrsMonty My DH said I should phone oncologist and say our cat knows I have stage 4 cancer😂as he was sniffing part of me and according to dh cats sniff out cancer. Re radiology they did not say anything about nails but maybe phone and check. Your arms do go above your head but don't think they are in line of radio for breast at least so would not have thought it matters.

We booked holiday very last minute, reserved time off in advance then just booked at end due to covid rules and hospital and ds. Normally do way before but nowadays with covid and cancer it's risky to do long way in advance. Did not bother with insurance either. Just did AI one so all very easy just book and go. My cancer treatment constantly changed dates and added things though having said that if you said I am on holiday they worked around dates. But if you ask can I book holiday they will say hmmm sometimes. I was 3 months post chemo and could do normal range of activities though must have looked weak as people kept offering me their seats. Just got 1 numb arm now, a chopped off breast and stupid hair, the hair from frozen peas is great and a few inches off normal now but the 50% chemo hair argh, it's white or brown, curly and causing chaos. So have have chin length Bob style fine and half underneath of white sticking out curls like a poodle but one that been crossed with a mad professor. Just cut some of that off. Depressing still a 2.5 year wait for boob as well after already a year wait. Oh I must be close to my cancerversary as well, 4 Nov discovered and a week later confirmed, not a date I wish to remember each year though.

Chrya, thank you so much for letting us know about Bridget. ❤️

I consider the day I had my debunking surgery as my cancerversary. It all happened so quickly I can’t in fact remember the actual date my giant watermelon sized cyst was found but it was about 2 weeks before my surgery on the 15th of November 2020. On the 29th of November I was officially told I had cancer but I’d known from about the 19th due to my follow up appt being sent to me the day I left hospital - it was for the gyne-oncology clinic and not the gyne clinic as it was before the surgery. All the effort that had gone into making sure patients had two weeks of not being told if results were available only for a text to blow it out of the water as I was crossing the hospital car park with my daughter to go home.

On the 15th of this month it will be 2 years and I have my check up on the 11th of December so I’m hoping I’ll be go from 6 monthly to annually.

Happily I’m no longer officially bonkers, I’m over the breakdown I had due to the whole thing and I now only take a 10mg dose of an anti anxiety tablet daily instead of the heavy duty anti psychotics I had to have initially.

I am glad that you're moving smoothly along the recovery path MrsThimbles - hope the scan takes you up to 12 monthly checks.

I can't remember the date I was more or less told I had BC and I refuse to check, but I did have the lumpectomy on our 37th wedding anniversary, so I don't think I'll forget that in a hurry! I was a cheap date that night!

Thanks @TopOfTheCliff, @Fantasea and @Silkierabbit The hip thing lit up on my first PET scan 2 years ago but is much bigger now. It doesn’t show on my CT scan but I had a pelvic MRI in May and I have asked my oncologist to dig that out first before we do anything else.

My cancerversary is clear, I went for a colposcopy for an abnormal smear. They could see something and asked the consultant to come and take a look and she knew it was cancer without the biopsy result.

Two of my friends got a call back recently to BC centre. Both were ok, no cancer.

I am a horrible person. I am so jealous.

I really wonder though how I move on from knowing I had cancer, it seems to inform all my future even though all signs so far are it is clear.

First appointment with radiology today. Went through possible options including a ‘let’s ignore it and see how it goes option’! But further explanation is it all depends on movement. Anyway back in two weeks for bean bag fitting etc.

I think its normal to be jealous of things when you have cancer Podge and think you are a lovely person not a horrible one. Why would not you want to be cancer free. I get jealous of people having my appearance before cancer. It isn't one thing that bothers me that much, its all the rubbish put together. I am now far more worried for my son than cancer, that's how I moved on but hopefully there's a nicer way. I think it basically will involve thinking about something else instead.

I agree with Silkerabbit podge your not an awful person I have had jealous feelings when others have had the all clear.it's like hearing a friend is pregnent when your struggling your happy for them but........ X

Podge I totally agree. I often feel jealous of people who are ignorant to the devastation, just as I was 7 months ago. People who have no idea what it’s like to genuinely fear you’re dying any minute now. I don’t wish cancer on anyone but sometimes I wish I knew someone with it for some common ground and moral support. I don’t know a single person in real life who’s ever had any sort of cancer. It’s a lonely place.

You're not horrible @Podgedodge that's perfectly normal. If you want to take it to another level, I, a stage 4 incurable cancer-haver am also jealous of people with curable cancers. Which I feel absolutely fucking awful about! Because cancer is a shitshow at whatever stage, in all and every possible way.

But I'm going to die of it & I very much wish I wasn't. I long for the years where I didn't know exactly how or when I was going to die & could fantasise about a nice quick heart attack in my 70s.

I get it with the jealousy too, completely - and in fact typed a reply earlier I decided was too dark even to post. It's natural - and I really admire the patience of all of you with incurable cancers, sharing the journey with those of us who might have a cancer-free future @mowly77

On another topic, I am in my first chemo cycle - SE not too bad, mainly just exhausted and brain foggy. But I'm struggling emotionally. I know this might make me sound like a spoiled child, but one of the things I'm finding hard is that I don't have anything to look forward to. Life hasn't been easy for me over the last few years, and one of my coping strategies has been always to have a mix of big and small things to look forward to. A theatre trip, a holiday, a fun work thing, a weekend with friends. I had loads of plans including a once-in-a-lifetime type holiday I had to cancel because of my dx. Ideas for things it's feasible to plan during and after treatment, which are unlikely to be scuppered would be nice?