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.

Just delurking to send love to @Bloodybridget. You’ve been such a wonderful support on this thread, keeping up with everyone - I hope we can support you going forward. Have a great break with DP x

@TopOfTheCliff You are so right about panicking but I'm afraid that appears to be my baseline. I've calmed somewhat now. Have tried to talk to DH about what to ask tomorrow but he is just wait and see what they say tomorrow. If I'm told I need further op/treatment what questions should I ask. I'm not telling anyone I'm up tomorrow as I can't deal with the phone calls tomorrow no matter what the outcome. So any advice very welcome as my Brian very fried tonight.

Haven't fried anyone called Brian. !! Brain on the other hand 🤷‍♀️

@gillmoregirl of course you are anxious about tomorrow, crossing fingers for you that it's nothing too bad, please do update us when you can.
@TopOfTheCliff thanks for the kind words - that's what's wonderful about this thread, we all help when we can, and get help when we need it.

Ok. It's now official. I have bowel cancer. Not surprised to be honest and expected it as you all know I've been on wait and see since May of this year. Surgeon said that they can't stage yet until I have the big operation to remove rectum and take what they need to. Good chance of stoma for 6 months given the location. Then decisions will be made about chemo etc. Fuck fuck fuck. I have to go now and tell my daughter. This is harder than I thought it would be. However I myself am strangely calm. Sorry I'm waffling but I just needed to say thank you to everyone for supporting me up till this point and looks like you won't get rid of me in a hurry now.

So sorry to read that gillmoregirl

Telling DC is one of the very worst bits. Have you rehearsed how you’ll put it?

@iVampire Totally floundering with how to start. Going to be as honest as I can but upbeat. Sitting outside Minor injuries as hubby pulled his bloody knee last night so going over conversations in my head. All advice very welcome. X

@GilmoreGirl its hard to get a confirmed diagnosis even when you are expecting it.
When we told DS(7) we decided that we would not try to hide anything from him so we were very honest with him i.e. mum has cancer the doctors are going to treat it but some of the treatment is going to make mum feel unwell for a while. We also did not want to overload him with information so we left it at that and have let him ask questions at his own pace.
I was an overwrought mess worrying about damaging his development and he was back to playing lego in 10 mins the Macmillan site has good advice

Oh @gillmoregirl I'm so sorry to hear your update. I'm sending you a massive hug. This is the really shiftiest rollercoaster.

I don't have DC so can't help with advice - but I guess be as open as you can given their age and give space for them to ask questions. That probably goes for anyone tbh, including yourself as you absorb the news.

Sending you much love x

Lots to catch up on here.

@Bloodybridget Very sorry to hear your news. I hope you find the right balance for you and your family going forward and that the trip to Norfolk helps with that.

I'm just thinking about precautions as I'm about to start chemo. I'm planning to walk with one or two friends, regularly. I'm asking dd just to be more careful and only to have one particular friend to the house and they both wash hands as they come in. She can still go to another friends house - close neighbours. Dh will still go to his office but it's a pretty safe environment. We live in a rural area.

@Zorgothslugofdoom It was me asking about the port so that's all very useful info thanks. I'm having it fitted Dec 1 so will have started chemo and tricky to fit in so not the same week as a chemo. Hoping that won't delay yet longer as I am eager to crack on.

@gillmoregirl Sorry to hear your news too - dh has been down that road with a total colectomy so have some experience by proxy.

Those who are more experienced - how did you handle work? I work part-time but already finding my focus and concentration is rather shot. I'm hoping to just keep going as long as possible as surgery is not until after 6 months of chemo. I have no idea if that's realistic - I suppose it depends how I react. I work from home which helps.

@Acinonyx2 I'm not massively more experienced, but have managed to work at about... 60-70% of normal capacity so far and I'm 3 rounds into 8 rounds of chemo. Had surgery first and two weeks off work after that. I also work from home, but manage a large international team and really have to delegate important work now as chemo brain is... well. It's just not like my normal brain!

I'm not sure if that helps or not...

@gillmoregirl - sorry you’re going to have to remind me how old your DD is.

Mine were teens and I’d managed to hide my first appointments during the school day. I waited until the diagnosis was confirmed and a treatment plan in place, because being able to follow up with the ‘and here’s what’s going to be done’ was a really important part of the message

Getting the first sentence out was the hardest bit (they had no idea anything was up). The Macmillan booklet on talking to children about cancer is useful

But I found that waiting a bit was good because I was calmer, had read up a bit (reputable sites only) and so could answer questions. If she is old enough to understand how serious cancer is, then being able to talk about treatments really helps, without airbrushing it too much you can then focus on what happens next, why it’s necessary etc. In bite size chunks - respond to what she actually says (not hit her with every scenario IYSWIM)

So pausing whist you think about how to make it as matter of fact as you can manage might help - for me it was only a fortnight from provisional diagnosis to confirmation and start of targeted treatment (during which time a short course of chemo had normalised blood count, so there was a bit of progress to throw in as well). The fewer uncertainties the better as a general rule (we all know how awful it is when you don’t quite know what you’re up against). Details of the operation can wait a bit, but onwards chemo can be presented (for now at least) as a positive thing because it can be powerful drugs to make sure it’s all gone.

Even though you don’t know exactly what the future will hold, you can still present it as doctors knowing a lot and having many options of strong treatments

Don’t leave it too long - otherwise it just becomes an albatross. But a few days whilst you process the news might help enormously

www.macmillan.org.uk/cancer-information-and-support/diagnosis/talking-about-cancer/talking-to-children-and-teenagers

Sorry @gillmoregirl. I'd already got the impression that there wasn't much doubt about it being cancer. As I said to my dentist, the beauty (cough, cough) of rectal/colon cancer is that they can do a scope and get a pretty good idea straightaway. The surgeon who did mine was quite ruthless in dismissing my hope that 'the thickening' seen on the scan was just an indigestible bit of broccoli or some such. But it's still a shock to hear the words 'cancer' or 'malignant' out loud, or 'carcinoma' written down in the letter sent to my GP.

How long is it till your surgery? I know you've had to wait for ages to get a date. I think you'll feel much better when that's over and it's one step after another (like @Starmer 'plodding along'). I find it easier to cope with a narrow focus: recover from surgery - check, start chemo - check and so on. It's not all doom and gloom. I was euphoric when I was finally allowed home from surgery and insisted on pausing on the doorstep with the key in my hand to savour the moment.

And chemo isn't necessarily a given - depends on lymph nodes and development of tumour. The oral sort isn't nearly as brutal as for bc and ovca patients. Still got my hair, for a start. That might help to maintain a sense of normality for your dd.

How old is she? It could be a good idea to have a private word with the school so they're in the picture.

P.S. I've just been discharged by Oncology. Clear scope, clear scans, normal bloods. 'And, in the nicest possible way, I hope I'll never have to see you again in my clinic.' That's after surgery, only half the usual chemo because of covid and the longest year of my life. I hesitated to post this for obvious reasons. We're not all as lucky and it could still come back. Bastard cancer. But there's good news as well as bad.

@Thymeout that wonderful news don't hesitate to share the good stuff too. I can only speak for myself but I need to hear good news.

@Thymeout. I was getting mixed messages since my colonoscopy in May. Told it didn't look malignant at first. Biopsies showed pre cancer and first consultant hopeful this would be diagnosis with warning that nothing was confirmed until after removal. Referred at this time for trans anal operation to remove lesion. Initial appoint with new surgeon was not offered until 10 august which was then subsequently cancelled. Rescheduled to 9 sept then flexi sigmoidoscopy done with biopsies taken at this time also showing pre cancer and surgeon said there were many features of lesion which were benign in nature. He did warn there was one area that looked more suspicious but naivety I guess I held onto the slight hope that after removal pathology results would confirm it was pre cancerous with no further treatment needed. Lesion removed on 29 sept but removed in four pieces rather than one. And now today told that pathology indicted cancer. Now again I'm on the waiting game to have surgery and then staging and treatment plan months after colonoscopy. I'm worried that the fact that it wasn't removed in one piece could mean it has spread. I'm worried about the delay in getting to this stage but there is no point looking behind me only forward.

For me it's definitely been the waiting with no definite answer that's been hard. Now I know it's definitely cancer now I just want to know exactly what I have to deal with. I didn't get that info today and won't until 7-10 day after operation.

DD is 17. Only child. I told her this evening and she was tearful but I was very positive and I think she's ok. I think everyone here was right. Honesty is definitely the best policy.

I'm happy to hear that you have been discharged from oncology. This must be a relief for you. Thank you for all your support and to everyone for handhold today.

Best wishes to all. 💕💕💕

@Acinonyx2 for me I pretty much had to stop work quite quickly. The period between diagnosis and my first chemo was only a couple of weeks. I had to use that time to write as many handover notes as I could. The intention was to try and work through but the reality of my chemo meant that I just couldn't cope with my body being assaulted and trying to concentrate (on anything) at the same time.

But everyone is different - I know others who had different types of NHL continue to work throughout barring a few days here and there. I really depends on your treatment and how you react.

I finished work at the end of March 2020. I'm not expecting to return until January 2021 and even then it will be part time. Back full time in March - well that's my goal anyway

P.S. fantastic news @Thymeout - yes do share the good stuff too. (That goes for everyone)

Though i had hoped I'd get to meet you when I go to the PRUH. Now I'll just have to wonder if I've already met you 😁

@gillmoregirl I am so sorry to hear your news. I have ulcerative colitis and the investigations I have had for that have been fairly intensive and unpleasant - I can't imagine what it must be like for cancer. And to have had so much uncertainty for so long is cruel.

@Lizdeflores I read your experiences about telling your DS with hope. My DS is seven and we have managed to keep the C-word from him so far as he is used to me going into hospital for my UC, but with chemo on the cards I know we have to tell him. I have been agonising about the fact that I am ruining his childhood and scarring him for life, but perhaps he will make it through unscathed. God, I really really hope he does.

@iVampire I totally missed your earlier post re telling DD. It makes so much sense. I did tell her as she asked outright how I got on today and I took the opportunity then. Gave her facts as I knew them and that the op was a positive thing on the road to make me better. I didn't dwell on a lengthy discussion. DH Dd and I then drive to the beach to walk the dogs. Stopped on way home to stock up on goodies (and bottle of wine for me and DH) and she appears to be ok now. Although she has spent all evening with us watching nature programmes and it's unusual for her to abandon her phone but I doubt this will last. And thank you for posting this link. 😘

@AlbertCampion. As @Lizdeflores says children really appear to handle it better thank we imagine. I think it's our instinct to protect them which makes it harder to be the one who causes any upset.

It's really difficult knowing what and how much to tell your children. My eldest is 24 now and living away- I did tell her a sanitised positive version once I had a plan in place, and that's been okay up until I've got a lot worse. She's recently moved in with her boyfriend (first serious relationship really), and I'm glad that he came with her to visit last time she came back. It meant I could update her with him there, so at least I know she's got his support, and he is very much in the picture.

Thanks for asking after me, @Bloodybridget- I've been AWOL for a couple of weeks because I've just had a fortnight stay in a hospice to try and get on top of my pain relief. They've basically doubled my Oxycodone, but I'm still struggling really. They are talking of radiotherapy to my pelvis to alleviate the pain down my bum and legs. You wouldn't think of that from breast cancer, would you? But once the metastasis hits your bones, you start hurting in so many places, trust me .

I'm delighted to be home tonight (and to hear @Thymeout's update, yay!), and hope everybody has as good a night as they can.

@gillmoregirl My DD is the same age as yours, she was 16 last year when I was going through treatment for BC, but we also have two older boys. Tbh she struggled, especially when I lost my hair as I think reality struck then. My diagnosis was so fast and unexpected though - I literally woke up one day with a sore red boob, was in hospital by that evening, and diagnosed with a rare and aggressive Stage 3 BC three days later - that I think everyone was in shock. Getting her school on board was crucial and luckily they have a good counselling team so she has been talking to someone ever since even though I am now well. I would try and make sure your DD has someone outside the family to talk to, especially as an only. My surgeon offered to talk to my kids and answer any questions which was really helpful - my eldest didn't want to but DD and DS2 met him and he was great. I think meeting the guy who was going to do my surgery also took the mystery out of it. I know I was very lucky with my team though and of course this was pre-Covid. Anyway, this thread is a lifesaver so we will see you though whatever happens 😊

@Thymeout I am so delighted to get your news, three loud cheers going up here!
@BitOfFun very good to see you again, hope the hospice stay really helped. Was it the first time you had stayed?
@gillmoregirl I am sorry, no matter how likely the dg seems, getting it is always a blow. Sending very best wishes to you and your DH and DD.
@KentishMama disappointing to be losing hair despite cold capping. Chemo is frigging exhausting, hope you can rest as much as you need to.
@Lizdeflores how are you feeling now?

Thanks again to all who have said what they're doing/did about shielding, it's very helpful for me to know, and to be able to relay to DP, of course she is very anxious that I won't be making myself too vulnerable to infection, but also wanting to limit the emotional impact of isolation as much as is sensible.

I've been pondering the practicalities of getting to and from the hospital, and am hoping the chemo ward will agree to me going in early on treatment days to get bloods done, rather than having to make two return trips in three days. Yes, I can afford cabs, but being miserly frugal I'm looking for any way to avoid spending £80 a month! Alternative is DP driving, navigating shiny new local road closures and consequent choked routes, congestion charge (which the hospital would refund) and parking issues.

@Bloodybridget re bloods. Do you have line in (picc/hickman)? I had to go once a week for line maintenance regardless of what day chemo was. So I could be going in on a Monday for line maintenance and chemo would be a couple of day later. My hospital generally used my results from line maintenance day to help avoid the to-ing and fro-ing. Same for when I have appointments with consultant on a Friday - she would be ok looking at Monday's results.

This might different now I'm post transplant and probably a bit more vulnerable - which is why I'm having bloods twice a week. But thankfully once at my local hospital and once at King's to spread the lift giving load on my support bubble.

I was naughty last week and got a taxi home from kings (1 hour) - Uber have to drive with windows open and it was bloody freezing 🥶

Are you under any community care, like the District Nurses? They may well come out and do your bloods at home. Certainly worth pushing for.