Cancer support thread #76 - newbies welcome!

[Bloodybridget]

Here's the next thread for anyone at any stage of cancer, from noticing a possibly warning sign, through tests and scans, diagnosis, treatment and beyond. Come on in for advice, sympathy and support.
The last thread is here.

If you've been on a previous thread, please come and say hello and introduce yourself!

If you are a relative or friend of someone with cancer and looking for support, please look for other threads; there is one in Life-limiting illness for partners - link to latest. This one is for cancer patients ourselves.

@InOtterNews last year I just got chemo through a cannula, I've never had a port/line, I assume it will be the same this time. My veins are good. My chemo will be four-weekly, so it's a much easier regime than yours.

Hi I'm okay my scar is very itichy,my friend offered me her dogs 'cone of shame' from his castration and i'm thinking of taking up the offer!. My back aches but mainly I'm frustrated with myself and want to be up and about. I hate people running around after me .

@Lizdeflores, @InOtterNews, @BitOfFun @Bloodybridget - thank you all for your kind comments. Much appreciated. I'll keep on reading, but will probably be unable to resist re-surfacing if I think I can help.

Liz Cone of shame! I had a TAH 6 yrs ago. My tip for this stage would be never to sit when you can lie down, so abdominal muscles can mend. I remember the backache, especially standing still in a queue. Back muscles are all that's holding you upright even when sitting at a table.

Otter - Yes - it's like Sliding Doors, isn't it? I used the train to get to Orpington hospital for a pre-colonoscopy covid test. There were only 3 of us on the whole train. Felt a lot safer than a cab. Would that work for you?

GG - thanks for taking the time to explain. I wish there was more bowel screening in the UK. My cousin in Canada has a colonoscopy every 3 years as part of a wellness check-up. We only have the DIY test from 60-75. 50 in Scotland? It does seem to be affecting younger people more than in the past. I think the fact that there's so much more precancerous than cancer in your tumour could be a positive sign re spread? As if it's only just started mutating into malignant?

I was a secondary school teacher in another life. It's really helpful to have a heads-up about worried pupils and, as pp said, it's good for them to be able to offload to someone outside the family circle.

Bof So pleased that you're back with your flamingoes. Does the hospice do home care?

Bridget - Don't see why chemo unit couldn't do bloods on the day. Mine did, only took an hour, when they were trying to cut down visits at the beginning of the last spike. Have you applied for a Blue Badge? Or hospital transport one way and DP joining you later to take you home?

So sorry to hear your news @gillmoregirl, especially when you've ben waiting so long and had that hope that it was all precancerous. When will the surgery be, do you know? I'm glad you've managed to tell your DD. I think it must be harder for older children - more knowledge of what cancer means. My 7 year old has taken it all very well @AlbertCampion, I think most of the time he forgets altogether, although his stoma bag fascination continues!

Wonderful news for you @Thymeout. Really happy for you. You have been a lovely source of hope and advice for me, as a fellow bowelly!

Can you go to GP for bloods @Bloodybridget? That's where I go, and oncology can see the results the next day. Otherwise it's a right pain having to go to and fro all the time.

And hope that the hospice stay has helped your pain @BitOfFun. Thinking of you, with all you've had to face recently. Chronic pain is awful.

@Thymeout eventually public transport will be an option. The bus to PRUH stops at end of my road and I can get a train to King's. I just need my bloods to improve.

I can drive but haven't driven for 20 years. I promised myself when I was in hospital I would have a refresher lesson and start again (I'm defo not well enough to drive at the moment).

@Starmer it seems like I can only get bloods done at Barts, or Whipps Cross, which is further away from us and parking is also a problem. @Thymeout I did phone Macmillan yesterday to ask about a temporary Blue Badge, which someone in my family had a few years ago when she was having cancer treatment, but they didn't know anything about it, and it's not mentioned on my local council website. I will look into it if I have mobility issues in time - all these organisations/benefits don't seem to have updated to allow for Covid. Hospital transport is apparently very unreliable, I couldn't cope with wondering if it would turn up on time!

The worst thing about hospital transport is that you have to be ready two hours in advance!

Big congrats to @thymeout! So very happy to read good news, we all need more of that and more of the other kind 😉

I'm struggling with chemo side effects and supportive meds. In the first two cycles the steroids drove me crazy, and then I crashed after a few days. This third cycle my onc dropped the steroids to next to nothing, so I had a horrible, weak and spaced out week. No steroid crash, but an awful time all week. Now I'm not sure if that was any better than steroid high followed by crash, and not sure how to report back... Urgh. This all feels like so much trial and error! Am I the only one here who was hoping for a much more scientific and accurate approach, rather than just trying things out?!

in case you didn't notice, I'm a complete control freak

Hello. I have posted in the Doghouse to get opinions there and I have received some very kind and informative answers, but I just wondered if anyone on here has any input...
Our new puppy arrived last Saturday and on Tuesday I found out the breast cancer has spread to my lymph nodes and I will need chemo as well as radiotherapy. I just have no conception of how I will cope with chemo and a brand new puppy. I am terrified and stressed and all over the place while trying to be normal for 7 yo DS and hold down a job. Realistically, is having a puppy during chemo doable?

Absolutely. That pup will keep you going throughout all this. A reason to get up, get out for gentle walks, to smile when you feel sick and the little pup falls over trying to climb the stairs...

You can still do this, and the grandson pup will help to distract you, and even be a listening ear for your seven year old.

That was my thought too - in fact I was tempted to get a puppy but my cats would not accept it I think. Dd is not too keen either.

I'm sure about a puppy - personally I'm more worried about holding down a job. Just have to wait and see on that one.

Thanks for the replies. We just keep going back and forth on it and I am in two minds about it all. @Acinonyx2 that is exactly my worry, really - I am trying to hold down my job and obviously that needs to be a priority along with my family. I am worried that the pressure of a puppy and trying to work during chemo might be too much.

@KentishMama

Big congrats to *@thymeout*! So very happy to read good news, we all need more of that and more of the other kind 😉

I'm struggling with chemo side effects and supportive meds. In the first two cycles the steroids drove me crazy, and then I crashed after a few days. This third cycle my onc dropped the steroids to next to nothing, so I had a horrible, weak and spaced out week. No steroid crash, but an awful time all week. Now I'm not sure if that was any better than steroid high followed by crash, and not sure how to report back... Urgh. This all feels like so much trial and error! Am I the only one here who was hoping for a much more scientific and accurate approach, rather than just trying things out?!

in case you didn't notice, I'm a complete control freak

Bloody steroids. I had massive highs/crashes when I was on them. I had them for 10 days post RCHOP cycles (x3) so didn't have them all the way through my treatment but I remember not sleeping at all and just feeling completely manic all the time. Then I'd have to take sleeping pills for a week to try and recover myself in time for next cycle.

They didn't reduce my dose at all. Can you talk to your Drs again - there has to be a happy medium for you.

@AlbertCampion A puppy is hard work initially but hopefully will be the best therapy for you and your DS. Will bring laughter and joy along with chewed slippers. Lol.

@BitOfFun Happy that you are home and hope you are comfortable. Sending lots of love. ❤️

@Starmer. My surgery is scheduled for 12 November. Hopefully keyhole but no promises made. Then after that I will have treatment plan. DD was ready but I stayed really positive and I think she is ok. Her friends and bF were good support. However this weekend she wouldn't let me out of her sight was like my shadow. She's also not been sleeping too well. I've told her not to google and to ask me anything and I'll answer as honestly as I can.

@Thymeout. Hope you stick around this thread as you have been great advice to me since my first post years ago for different investigations. Hope you got to celebrate your good news. Like you I hope fact that my biopsies were indicating precancerous up until removal that staging will be early. However I can't shake the niggle that it was removed in pieces and there was cancer within.

Wishing everyone a peaceful and positive week ahead. Xxxx

I think this picture perfectly illustrates the importance of taking smaller steps.

Hello and welcome to all the newbies!

I have Stage 4 breast cancer, and my complications are racking up now, so I'm not expecting to have another year in me...that said, I've come up with a Pollyanna-style game of counting my blessings we can play if you like?

I'll start: I will probably spend the rest of my life using only the highest end cosmetics and makeup FOR NOTHING, because I'll only ever need free samples!

Who's next?

Hello @BitOfFun. So sorry to read about your recent stay in the hospice. That must be so hard and just exhausting.

Loving the game idea! My blessing is that we have just finally had our kitchen done and it is so beautiful that being quarantined in the house for god knows how long won't be too much of a chore, cos I can just stare lovingly at the breakfast bar. (Am quite sad!)

Ohhhhh, a bit of kitchen porn, how lovely! Come on, love, let's have some pics to drool over, please!

I relied so much on gardening for therapy during lockdown I've now started an indoor garden with plants and seeds - packed in by the back patio window/doors. As if our house wasn't cluttered enough. It's day of the triffids and some but I like it. I think some of the plants may get rather big though. Even dwarf banana plants get pretty big...

BOF I like your style!!

AlbertCampion - keep the puppy. I think it’s great that MN posters acknowledge that puppies can be tough. But remember that people tend to post about problems than pleasures. In RL, when I was talking about worries pre-puppy, the resounding responses were along the lines of ‘it’s nowhere near as bad as you’re worrying about, and even if it was it doesn’t last long’

I found a nearby doggy day care for occasional use (length of time at the hospital for the main appointments was variable) and not all take very little puppies. If you’ve not got one lined up, start looking. You might find that if you tell friends, you suddenly have a lot of potential dogsitters (the people who weren’t quite ready to take the plunge into full time ownership, but will cover other times)

DPuppy is now a young dog, and very, very high up in the ‘list your blessings’ list

@gillmoregirl your drawing of the ladders is ace, such a good way to remind ourselves to have achievable goals.
@AlbertCampion, please, please, a kitchen photo!
@Acinonyx2 might you show us your indoor garden?
@BitOfFun you are awesome with the counting of blessings. I have to say I'm struggling to think of any positives for myself atm (I mean for my actual illness/prognosis - have plenty to be thankful for apart from that), but last year I did say to a friend that I probably wouldn't run out of money or die with dementia.

@Bloodybridget Can't take credit for pic. Pilfered it from internet as it certainly resonated with me.

@BitOfFun Good game. I am grateful for all my blessings especially family.

The news recently has been scary here as local hospitals are talking about the cancellation of some cancer operations due to rise in Covid cases. Stress on top of stress.

@AlbertCampion Hope you've been reassured about puppy. Any pics.

Hello! So this is the kitchen. It was a very awkward space which involved knocking down two walls and all sorts of shenanigans, and it is obviously still not massive, but I love it! And we have a Quooker installed which means I can satisfy my craving for constant cups of tea easily!

Argh! Can anyone see photos?

@AlbertCampion Lol. No photos.