Cancer support thread #74 - come in, we're here for you.

[Hippiechick162]

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 iswww.mumsnet.com/Talk/general_health/3760336-Cancer-support-thread-73-come-in-were-here-for-you

Current members, please do introduce yourselves smile

Sorry completely dropped off the thread and haven’t even been reading. I haven’t been great (physically fine, mentally very down).

Have had so many calls from hospitals this week everyone saying something different.
Surgery is Tuesday!!!! I’m freaking out and have hardly stopped crying for two days. I just have this overwhelming feeling of something bad happening. Logically I know there is a chance, obviously with any surgery of something going wrong (small chance) but I just can’t get rid of this feeling.

Had chest CT this morning only for hospital to say it was too far out from op so will need another one on Monday.. annoyed! Cost me £40 round trip as DH went to drive me and battery was flat so had to get an Uber. Go in Sunday morning at 7am for covid swabs and blood test then admitted Monday afternoon. Unless ofcourse they change things before then which given the amount of times things have changed this week it is quite likely .

Will try and catch up on thread and how everyone is doing. Hope you are all doing as well as can be.

@Trumpton Apparently the chemo department is very empty. Plus the nurses will predominantly be speaking Dutch. I will basically be on my own, having scary thoughts etc. Feeling really low these last few days. Wondering why me?

@citybumpkin It’s all very new and scary but every nurse I met was kind and gentle and that’s the same in any language .
We are obviously coming at this from different perspectives but I found a small quiet place in the back of my skull and sat there .
I treated it ,not as a battle ( hated that ) but as something to be endured .
My children are all grown and my grandchildren are older than your little girl but every time I got scared i managed to retreat into my space .

This might not help and feel free to snort and roll your eyes . It’s ok to be scared and furious and feel it’s not fair ...that’s because it isn’t fair !

I am sorry if I have read your post in the wrong way ... I want to give you a big hug and kick this shitty disease right in the balls and that is what the chemo is doing . Not nice , not at all , but something to be endured for a short part of our lives to give us longer lives with our loved ones .

Again apologies if you feel I am preaching but these are my thoughts . Be kind to yourself .

@Trumpton You're not preaching at all and your words are kind and thoughtful! Emotions are like a pendulum - from one extreme to the other. Some days I feel "right, just get on with it" and other days "whats the point?" That alongside all the physical stuff... There is no rest from this. I think the problem now is that I was all psyched up for chemo right after diagnosis, worked myself up and then found my peace. I'm going through those emotions all over again plus the aches/pains from surgery. Every little niggle means the cancer has spread. I watched my mum go through all this. It feels like a crap film on repeat now.

Yes I get all that . I was supposed to have mastectomy followed by radiotherapy and then a week before the op that was all changed and I had chemo for 12 weeks them mastectomy.
I did feel like a pinball at one time !
Oh and the 3am horrors .
Stay with us and we will stay with you X

My attempt at catching up....

@trumpton sorry you are having trouble with another UTI sounds horrendous and i hope it is all sorted now. Congratulations on the pathology results, such amazing news, must be a huge relief after such a hard slog. Hope you enjoyed your indian.

@citybumpkin was so glad to read about your good genetic results but so sorry you are struggling since surgery. How are you doing today?

@barberousbarbara Glad surgery went well and I hope the pain and drains don't last too long, it all sounds very uncomfortable for you.
Congratulations on paying off the mortgage - although I'm sure you would rather still have a mortgage than have to go through what you have. My insurance paid out earlier in the year which was a relief, we didn't really put much thought into critical illness with the amount so won't pay off the mortgage for us so have put it aside as my 'drop dead fund' in case things don't go to plan and can help DH and DS in the future.

@Skap how are your illegal walks going? I too don't see away for people on the shielded list to go safely out until there is a vaccine and that thought is so very depressing.

@redspook that is the best news, belated congratulations on your all clear.

@CrymbleCrumble sorry you find yourself on this thread, it is a good place to be though everyone is so supportive. hope your treatment is going well

@Chesneyhawkes1 the start of your radio/chemo is approaching fast how are you feeling about it?

@Zorgothslugofdoom sorry you are in so much pain and antibiotics don't seem to be working

@Nonotmenori sounds like you have been having a rubbish time of it hopefully things have improved a bit?
I hope the new oven is cooking you some delicious meals! I have put on a lot of weigh since starting treatment about 20 lbs. I'm disgusted with myself, some of it I blame steroids and the fact that I have not been allowed to touch fruit or vegetables for 5 months but I have packed a lot of it on recently just because I have been greedy and stuffing my face. When I was diagnosed I as hoping my silver lining would be weight loss.... really didn't work out for me. haha.
Have got my eating under a bit more control the last week and a half and have lost 2.5 of those lbs and I am now determined to get it off although I am preparing for it to be a very slow journey when I can't exercise properly.

My most exciting new is ocado seem to have sorted themselves out enough for me to be able to now regularly book a weekly slot.. is literally the only thing on my calendar.

Sorry to anyone I have missed out on it isn't on purpose I am just so rubbish at keeping on top of thread and keep who is who straight in my head.

@Trumpton I really like the way you have explained how you have looked at this 'journey' (hate that word).
I treated it ,not as a battle ( hated that ) but as something to be endured

As soon as I read that sentence it made me realise why I hate people saying I'm so proud of you for fighting so hard and being so brave etc etc. (gives me the rage) It's because I don't see it as a battle I'm doing what I have to, what I'm told to get through.

Exactly @Squiffy01 .
You are so brave .... I am not !
But if it makes you feel better to think that that’s also ok .

@Squiffy01 it's Monday I start. Feeling fine about it thank you. In some ways I'm looking forward to getting started. Sooner I start, sooner it's done 😊 I'm sure the nerves will kick in at some point.

Been running lots this week, just in case I don't feel like doing it as much during treatment.

Trying to get stuff sorted, dogs food stocked up etc so I don't have to go out too much either.

Well done on your Ocado slot!

I hope everyone is as well as they can be x

@Squiffy01 I'm feeling pretty crappy. Pain and aching still there. I've still got a weird pain on my back, level with my armpit. Its sore even when I just touch the skin. Also a cord under my boob which is now agony when I stretch. No idea whats going on re my back?! Nerves? Internal bruising? Anyone else had this?

Went back to the wig specialist today. Took a new friend (met her in hospital after surgery - also had a lumpectomy and is British). It was weird. Took me back to the week after diagnosis and how spaced out I was then. At that visit I got the wig lady to just chop off my hair. Brave, yes. Sad, yes. It was only two months ago but feels like an age.

Still petrified of chemo. My anxiety is really ramping up. I've lost my appetite and just feel very low again. DD is now noticing mummy is sad. She is giving lots of hugs and kisses. This should make me happy but I just keep thinking what if I go...

@Squiffy01
I just re read my last post and feel it could be misconstrued .

It should say

When people say “You are so brave ”....I think “ I am not ! ”

And then I think
“But if it makes you feel better to think that that’s also ok “

Somehow people feel better when they say you are brave .
I wonder why ?

“

@citybumpkin sorry to hear you are in lots of pain sounds dreadful and hopefully they can sort it out for you soon.
How old is you DD again 13 months now?
My DS is also giving me extra cuddles. I have had a good month if pushing the won’t be here thoughts out of my head but with surgery nearly here they are back and strong.

@trumpton I understood what you meant. I’m sure it makes them feel better to say it, and I don’t let on that it annoys me. The only thing I think, like you, is I am not. I have learnt not to voice it.

@Squiffy01 I'm having an ultrasound next week but I'm now thinking its a bone scan?! My mum BC spread to her bones. Can it spread that quickly? I had an MRI and a PETscan about 5 weeks ago and they only showed the boob tumour.

Yes, DD is nearly 13 months. How old is yours? Its hard to push those thoughts away. I was doing reasonably okay. But with this pain not disappearing and now chemo looming... My prognosis is so-so but all the what ifs are zooming around my head. DD is amazing. I already feel I'm missing out on her development with appointments, feeling spaced out/anxious etc.

@citybumpkin I wouldn’t think an ultrasound would pick up spread to bones?? But an MRI would? I actually have no idea hopefully someone will come along with knowledge...

DS is 19 months now I love this age so much and he is generally good at keeping me happy.

@Squiffy01 I've no idea?! I'm being sent to a different hospital for the u/s. Not too far away but I've had u/s before at my hospital. Perhaps short staffed/extended bank holiday here?! I didn't question as so pleased they were taking the pain seriously.

Loving the 12 months plus age! Developing their own little characters and fascinated with the world. If you ask DD "where are your shoes?" she stands right next to them and waves her arms at them/squeaks. Not loving the teething though.

Amber So pleased to hear you're doing well. I seem to remember you had to give up Herceptin because of heart issues?

9 years! I was a lurker then. Now here in my own right - Stage 2 colon cancer. Chemo was 'optional' said the MDT, but the oncs I saw stopped being neutral as soon as it looked as if I had decided against it! Capecitibine - oral only, so not too bad. I did 4 cycles and then onc and I agreed that the best thing for me at 78 was to stop and get as healthy as possible during covid-19. So fingers crossed!

citybumpkin did you miss Amber's post about order of treatment? I know it won't stop you worrying. Your mother's history is overwhelming but I hope it might offer a grain or two of reassurance. Amber knows her stuff.

@Thymeout Amber's post? Sorry, I may have. Read so much stuff that everything is a blur.

Hope you're doing ok

citybumpkin
Amberlight's post:

"Hi all. Waving and reading through.
I'm still OK at year 9 and a bit, and still wading through some useful papers etc. [BC, HER2+, HR-, Grade 3, Stage 2, all the usual treatment/lumpectomy fun 'n games plus bonus additional op for odd skin tumour in radiation field]
@Citybumpkin, - the order of your treatment. I think quite a few teams are experimenting more with that order. If the surgery and rads zap it completely, they can be kinder with chemo types. Should work ok.
@Trumpton, hurrah!"

I'm OK. A bit disappointed that I still feel so tired and achey, but onc said it would take weeks. Gave myself a scare yesterday by getting dehydrated. Woke up, room turned on its side, hot, cold, faint. Felt dreadful. Sepsid? Covid? But lovely nurse on the 24 hr hotline sorted me out and she was right. A gallon or so of watered down squash made me feel so much better.

@Thymeout Ah okay. With trip neg they really like to zap it with chemo so I can't escape the harsh ones

@Thymeout could you remind me what op you had again? What sort of foods were you eating and when were you allowed to eat everything again? I know it might still be a while but after 5 months of no fruits and veg I’m very excited that they might be back in soon.

I had a hemi-colectomy.The tumour was in the middle of the transverse colon, so they removed the ascending colon on the right and most of the transverse. I still have the left-side descending colon but still haven't managed to work out what is connected to what.

I was on the low-residue diet between the coloscopy and surgery to prevent an obstruction. Wasn't allowed to eat for most of the time I was in hospital. Then fortisip. Wasn't hungry, and vanilla fortisip is revolting.

When I was discharged I was on no fruit and veg for 10 days. Surgeon seemed more easy-going than the nutritionist and said bananas were OK. You'll get lots of instructions, dividing food into levels, and then you gradually try out new foods, working up to being able to eat level 3 stuff.

Lots of stuff on-line with recipes. I was v careful and didn't have any problems. I know how you feel. The taste of my first slice of cucumber was amazing. Haven't eaten baked beans yet or nuts or seeds, and have avoided cauliflower and broccoli stalks. But I remember eating a Brussel sprout and wholegrain bread at Christmas, 7 weeks after surgery. 12 weeks after surgery, I remember telling my surgeon that I was beginning to wonder why people needed a whole colon when I was getting along so well with just half.

Are you having keyhole or open surgery? My super-duper surgeon prefers keyhole but I had to have open surgery because of previous abdominal surgery. Even so, I didn't need painkillers when I was discharged after 8 days. 3 visits from surgical nurses and daily phone-calls were reassuring since I live on my own but, after my time on the ward, all I really wanted was peace and quiet.

@citybumpkin I started with aggressive Chemo too as I had Inflammatory breast cancer which is rare and aggressive and I reacted very positively to the Chemo - not a complete pathological response but pretty much as good as it gets with IBC. Tbh in retrospect I am glad I got the Chemo out of the way first. Yes, it probably was the hardest part of the treatment but you just get through it one session at a time - it really doesn't seem that long before you can start to go half way there, only X number of sessions left etc. As my medical oncologist says the only side effect of Chemo that they can't manage with medication these days is the fatigue, and I found that to be true although my bedside table did look like a pharmacy. Also, the PET scan is definitive, if it only shows the boob tumor that is all that is there. Keep posting, you will get through this x

@SnowsInWater Thanks. I hope you are doing okay. I've already had a lumpectomy. It should have been chemo first but due to covid my treatment plan changed. I know everyone reacts differently to chemo but I'm fearing the worst. Seriously worried about the fatigue as I've got a really active 1 year old. There is only my partner and I looking after her (again, covid). The PETscan was over 5 weeks ago now so it could have spread.

@Thymeout I am having a right hemi, which sounds like what you had??
The surgeon said mine was very bulky and was worried about not getting it all so wanted me to have chemo first so I have been off fibre since late November to prove that blockage.
It will be open surgery it was down for key hole but they said they aren’t doing any key hole surgery at the moment due to covid as with key hole have to pump the abdomen with gas which is very risky with covid about??! No idea why but that’s what I was told.

@Squiffy. Yes. R-HH. Mine turned out to be 'extended', because a sharp-eyed surgeon spotted a nodule at the junction with the stomach and small bowel. I'd heard about no keyhole because of covid, too.

You'll need comfortable clothes for convalescing. Elastic waistbands. Someone on my ward had v stylish 'leisurewear' from primark. I don't have any everyday skirts so had to wear p.js for longer than I'd have liked at home until the swelling had gone down. No showers for ages, but visiting nurse recommended jugs of water over the kitchen sink for washing my hair, which was driving me mad.