Cancer support thread #72 - come in, we're here for you

[Bloodybridget]

Welcome to the new support thread for anyone who has cancer, at whatever stage of treatment, is worried about symptoms, or is waiting for tests or results.

This is the place to worry, moan, ask questions, share experiences and good and bad news, and celebrate milestones!

If you've got a loved one with cancer then your best place for support is probably on the Life-Limiting Illness board.

Our previous thread is here

Current members, please do introduce yourselves

You lot are lovely
And yes catnidge i think we all are pretty magnificent really to be dealing with all of this....go us!!
I'm struggling to get out of bed today though sadly not because pinned down by a cat. I've been contemplating getting one....family cat was nearly 20 when she passed away and she was such good company. I'm not sure it's a great look for an older woman living alone though.....especially this close to Halloween!
Feeling very meh today, achy and tired, though I think my foot is a bit better.
I've just Googled 'whats the point' ...but Google doesn't seem to know either
Was contemplating a walk but worried that if I set off I might run out of steam and not make it back. Guess it's another day of sitting tight

@WTF, DS2 has a cat and he is most definitely not the sit on your lap comforting sort. You don't have to do marathon but just feeling the fresh air and seeing the sky instead of four walls might be good? Could you just walk around the garden or a slow stroll a few yards up the road and back?
@Trumpton how are you?

wtf cats are pretty good company. I'm sure no one will think you're a crazy cat lady!
We have two plus a dog.

Did you say you are contemplating a move?
Looking at properties on line passes time. In the summer we went to see family in texas and I'm always amazed at what you can buy out there for your money!

Like skap says maybe try to do a short walk. I'm aiming for the end of my road (6 houses) by next Sunday.

I'm now downstairs and looking out the window at the bird feeder so find that passes time as well.

Husband and ds2 wrestled on my compress stockings whilst ds4 dried my hair, so I have been pampered!

Hunkered down with a sore throat and irritating cough ( totally not related to breast cancer ! )
Had good news on Friday as Manchester have agreed to take me on and will operate in November . That’s all my lovely nurse could tell me ,she just wanted the nod to stand Liverpool down and get Manchester on board . So still no date for pre op but she says very soon .
Trying to squeeze a visit into see best friend in N Wales before she leaves her family home of 33 years and of course the festival in Cornwall.
Off to see MIL this afternoon and tell her the news ( she only knows I have had biopsy and have been waiting for results )
We have her late partner’s daughter coming 30 mins after we tell her so she can stay and have tea and pick up the pieces !
Then next week Social Services hope to get something set up and the local befrienders say they can send someone in each week to sit and chat .
One more step !

That's great progress trumpton !

I'm up and dressed and might go for a mooch

It’s pelting down here and has been all day !

Trumpton glad you know a bit more about surgery.
I am too tired and stupid to respond properly to various posts atm. Better during the day, but I start coughing again in the evening and lots at night. NDN who is a GP told me today, kindly and sympathetically, that it would probably take 2-3 weeks to get over this!

Stupid me posted too soon. Who was it who mentioned Naseptin, Skap? Thanks for the suggestion. I could probably ask my GP about it.
Should have been doing singing things tonight and tomorrow night, but have rescheduled first, and Tuesday looking increasingly unlikely too. Pah.
I never sleep all night! But I'm used to it, and manage very well usually.
Random q: is anyone watching The World on Fire serial on BBC? I think it's brilliant.
Hope everyone else is sensibly and peacefully asleep, waving to @Snowsinwater (who should be awake), how are you?

Yes Bridget I am awake 😊 I know it sounds really pathetic as everyone here is so good at individual support but I hesitate to post as my brain just can't keep stories straight. I always prided myself on being pretty sharp so I really struggle with feeling stupid!!!! Sounds like a really rough ride for you at the moment. It's also horrible when you have to cancel the things that give you some sense of normal as it's a tangible reminder of your limitations. I had a psychologist apt last week which I was hoping would make me feel less down (I have been told it's classic end of treatment stuff) but I came away $200 poorer and thought next time I'll buy a friend a nice meal and bend their ear instead, far more fun and just as useful 😂 take care xx

trumpton it's good to hear you have some more info re your surgery date.
How did your visit to mil go?

brdget sorry to see you awake again, coughs and colds are always worse at night. Sorry about your singing.
Bridget you've also had everything out surgery? Did you get any advice or support re recovery. I feel like I've been sent home with nothing in place. My nurse hasn't been responding for a few weeks so I don't really know who to contact. Did you get any physio?

snows I always wonder whether it's worth paying for support or better just to offload to willing friends.

I am also felled with a weird cough and sore throat . I think I was awake 4 times during the night but have downloaded a white noise app that is helping me to drift off again .
Visit to MIL was so sad . We felt it best to go in hard and fast so sat her down with a cuppa and said we had bad news and that we got the biopsy results back on Friday (!)and they showed I needed a mastectomy soon .
In a way it was worse than telling DH or the children .
But ,as is her way , she copes with big things well . if the window cleaner can’t come or the bin men then it’s a major disaster but this she took on her chin although very shaken .
I wrote all the info down for her and we talked about how it would be normal to forget details and to write any questions down .
Then her late partners daughter arrived and we “ told “ her .she works in Social Services and knows all about the nuts and bolts .
Practical care gets set up next week and MIL will have to pay for that but can afford it .
I wished I did not have this cold but dare not pass it onto her so couldn’t give her a hug but DH did .
Might pop in today with a coatigan that I have been altering for her . Double faced cashmere reduced from £180 to £18 in tkmaxx . She is tiny and only weighs 6st and is always chilly .
I have ended up doing her housework in my undies before now as the house is so warm , windows flung open and to hell with the neighbours !
I had a full day planned for Saturday including a potters fair that I was looking forward to for months and an Organ recital and just ended up goin back to bed to sleep . Grrr .

Snows honestly, in the nicest possible way, you're being daft about not posting because of struggling to keep up with individual posters! I think of you often and want to hear from you, if people just drop off the radar they are missed and one wonders if they're ok or going through something horrible. It's not like you have to pass a text on everyone's diagnosis, treatment and current side effects! Please do check in sometimes!
That's a real shame you blew $200 and didn't get much benefit - a great meal with a good friend sounds much more therapeutic! And, you know, venting on here might help a tiny bit too.
catnidge yes I did have everything out: uterus, ovaries, Fallopian tubes, cervix, omentum, and a bit of bowel for good measure! One of the many bits of paper I was given before surgery had a "trajectory of recovery" chart which suggested what I might expect to be able to do in the days and weeks after surgery, and I remember it said I should be pretty much back to normal after six weeks. Did you get anything like that?
I've been reading through my diary from when I had surgery on 24th May. I was in hospital for 9 nights, could walk well enough and do stairs by the time I came home. I didn't have any physio. On 8th June I went for coffee to a friend in the next street and walked home on my own - maybe 300 yards? 16th May: "I wish I felt stronger, I thought I would by now". Lots of aches and pains, constipation, diarrhoea, horrible leg pain at night which took a while to sort out. By about 20th June I was using public transport a bit and had some longer outings (mostly for hospital appointments).
I am in my 60s and I started chemo less than 6 weeks after surgery. I certainly hadn't recovered anything like my usual strength and stamina by then, I had driven a bit.
That's quite an essay - let me know if you have specific questions. I think the post surgery time is really hard but there should be professional support/advice available so keep pushing for it (not easy when you are feeling rubbish).

@Bloodybridget
I have been thinking of writing a post event diary I am sure it will help me as I go through this .
I can prob put together the months from June when I had the first mammogram to now from these pages and the notes the breast nurse took from me .
And then add to it when I feel like it .
I too sometimes hold back from posting as I feel it’s a one way street with me taking comfort but having nothing in my brain to offer back .

I was given the most amazing card yesterday . It’s going into my hospital bag !

Sending best wishes and commiserations to all who are suffering with colds, coughs sore throats etc. I am recovering slowly but as Bridgets GP neighbour says, it takes a while. I have a mild lung condition and I always find that it takes weeks to get rid of the post virus cough. I dont have much stamina at the moment anyway but all that coughing takes so much energy. Do you think we could count it as exercise!!??

Trumpton I was glad to hear that there is more of a plan in place for you although Manchester still sounds awkwardly far from home for you. Telling your Mil must have been hard.

Snows it is always good to hear from you. Like you I sometimes find it hard to keep track of what is happening to everyone. Your counselling session sounds expensive especially if you didn't feel much benefit from it. Perhaps it is one of those things where you will feel later that it did have some benefit?

Trumpton I love that card. I might just have to go looking for one of those.

This is the maker . She does a fab line in empathy cards !

Oh FFS I just typed a massive long reply to everyone and my bloody iPad decided to go on a frolic of its own and lose the lot! Forgive me if I don’t redo it (it took about 20 minutes 😡) but suffice to say I’m sorry to see how many of this lovely group are suffering with colds and coughs, painful hands and feet, health scares for family, sore skin, fatigue, not sleeping, nose bleeds, not getting back to normal as quickly as you want, trouble swallowing tablets, low mood, muddled treatment plans, chemo brain etc. It’s all really hard and all we can hope for is better days to come sooner rather than later. Gentle hugs for anyone needing them.

I’m feeling ok, currently in limbo between the end of chemo and surgery but I’m fortunate in having my appetite and taste buds back, not picked up any colds etc and gradually feeling stronger. I would like hair, eyelashes and brows to hurry back as I do feel a bit fed up with this plucked chicken look I’ve got going on but I don’t think I can complain too much compared with what many of you are going through. I’m sure my time will come anyway when I can get stuck in to a good old moan 😄.

ivampire congratulations on your marathon place! That’s very exciting. Which charity are you running for? What’s the longest distance you have run to date?

Have a good or at least maybe a little better day everyone x

Oh and Catnidge I saw you have to get compression stockings on - not sure if you’re aware of an easy way to do this. Most people try to put them on like normal socks and it’s so hard because there isn’t enough stretch in the material. Have a look at this which shows the cunning trick I was taught. Makes life so much easier!

Morning all,
Well I've started the day feeling quite chipper and probs the best I've felt this cycle. Having said that I've just got on the sofa for a teeny rest as suddenly felt like someone had pulled my batteries out. But I have had a glimpse of what something more normal feels like.....and it feels good!
Can't wait to be able to eat properly as food still tastes vile, but on the upside I'm not gonna have to return to Slimming World as the weight I gained in the first 3 sicky cycles has dropped off me.....so bonus!

I second the call for people not to stop contributing cos of difficulty in name checking. I find everyone's contributions really useful and would rather hear from people than not. So let's let each other off the hook on that one.

Anyone got any top tips for radiotherapy? I've got my planning appointment on Friday morning and I'm guessing my 15 sessions will start soon after that.

trumpton did you get a decision on chemo?

@SnowsInWater Please don't feel you have to check in with everyone. Some people do it some of the time. I do it if I feel up to it but not always and I'm sure I miss people. This thread isn't about feeling a duty to do anything and we do want to hear from you. The Oz angle is interesting, are you from Australia originally?
@Trumpton I'm glad you have got surgery lined up even if it's in Manchester. In a way I guess that means you'll have a crack team if it's a big city hospital. I've no real complaints but I do wonder how the experiences differ between city centre of excellence and a small town hospital. It's sad about your MIL. I can't remember does she have dementia? My mum is just old and frail. She's had lots of infections and it's her 85th birthday this week. I may not be able to go as she has CDif. I might have linked to this before but there are some good blogs on breast cancer and I bought and read her book.
@Brassica so pleased to hear you are on the up.
@Bloodybridget sorry you are miserable and feeling rubbish. I'm interested in the diary, did you start just for this cancer thing or do you always write one? Have you ever written a blog or similar?

For me the dizziness has subsided and the numbness in left hand and foot has gone. Round two tomorrow.

@Skap .
MIL is as bright as a button . Not a lot gets by her . We hid the early ops as they were masked by a ,genuine, sore back .
She lives alone , runs a good iPad , and looks after herself . That said she is 96 and needs support .
Oh and I bought my own copy of “ Ticking off Cancer” and recommend it . The tick lists are really useful .
No decision on chemo and Herceptin yet .

Will respond properly later, am out now (in John Lewis omg!) But just to say to Skap, I've kept a diary for nearly 50 years! Not a blogger. This illness was definitely something I wanted to write about, for emotional and practical reasons. I've also taken photos of my changing body.

@Bloodybridget wow 50 years of diaries, respect! I met a woman on a creative writing course who had kept diaries all her life and was looking for a way to use them in writing. I remember she wrote a very powerful piece about an incident in her childhood.

Right, so I decided this morning that I wasn't going to radio anymore, that lasted all of five minutes and gave myself a kick in the bum for even thinking that, so off I went, bit fed up with it all, then ds1 text me that he has been baking at the weekend and what did I fancy, I said if you haven't got lemon drizzle with lemon icing your no son of mine, and of course he did and much more he's been feeding his partner like food is going out of fashion since she was sick so I thought it only fair I should help her out, scones lemon drizzle or biscuits anyone, feck knows we need cheering up sometimes

Thinking of you all as always and hoping all coughs colds and general bloody fed upness will go away soon for us all.

Yey ! Manchester for plastic surgeon and anything else they can throw at me on 30th October .
We were booked to fly from island to and then Manchester to Newquay on 31st retuning on 4th for a festival .
Spoke to Flybe who said as there had been a ( 5min) schedule change on original flights they would change day from island to Manchester for free !
Things are moving !