Cancer Support Thread #71 - here to help if you’re dealing with cancer in any shape or form, come in and say hello.

[Brassica]

Hi again everyone and welcome to the 71st new thread for cancer support.

All those who are currently being treated, have been treated in the past, have worries and concerns and/or are having tests are very welcome to pull up a chair and chat, vent, rant, pour hearts out, share milestones and anything else! We are a very friendly and all-too experienced bunch on here and there are no questions too small or silly to ask.

Our previous thread is here .

Anyone with any type of cancer (female or male) is welcome. And we will hold your hand if you're waiting to find out whether or not you have cancer at all.

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

Please can I invite current members to reintroduce yourselves below for latest situations and stories so far.

Brassica two more chemos to go !
Skap very pleased to hear you are feeling ok today. Respect to you for going to Pilates!

District nurse came this morning and dressed the opening . I soaked trough the dressing within 3 hours so dd redid it with more absorbent dressing .
District nurse back in the morning .
Pilates @Skap . I am impressed.
@Brassica . Extreme sewing !
@BloodyBridget . It’s a lovely place to live and the health service seems to quite joined up .
@Catnidge. Welcome to the club that no one wants to be in . The support here is amazing . Telling the children ( all in their 30s )was hard
but the girls have been amazing . DS less so but he has mental health problems and I have learned to accept what I get !

@ellenanora5 . Oh it was so horrible ! I was shrieking at DH for a towel and he was asking me which one !

Bloody hell Pilates Skap, fair play to you, the anastrozole is for five years, the side effects so far have been, skin breakouts, hot flushes really bad like my whole body is on fire, having trouble sleeping and getting dizzy spells, the oncologist did warn and said they should settle down after six months so fingers crossed for that.

Trupmton I ruined so many tops with it, at one stage I was out driving and it started, I was soaked through with it, it does eventually stop, I was still using steri strips until two weeks ago.

Catnidge sorry your here, mine was breast cancer so no experience of what you are going through, this is a great thread for support, my children are ds1 late 20s and ds2 late teens, ds2 is disabled so it was a different story telling him

Bloodybridget I think you asked me something I'll have to scroll back sorry about that, I really need that spreadsheet, sorry to who else I've not mentioned but as always you are all in my thoughts.

Brassica sorry it was you and not Bridget, just posted about the side effects there, they are a bloody nuiscance especially since I have been through the menopause a few years ago with very little symptoms, didn't really notice to be honest so this is a bit of a shock.

Many thanks for all your support. I've been on MN since 2005 and have name changed a few times. I mostly used to be on the SN boards but over recent years life/work got in the way of my MN habit.
Meercat23, i know that I find it hard to say the right thing to say to people so guess I will have to accept that people will say lots of well meaning but slightly 'off' commnets to me over the coming weeks.

Brassica, skap, i do have a partner and he came along with me for the diagnosis, think he is quite shocked at the moment. My sister works part time and is very supportive.
My children are 17, 20, 23 and 26. One is a junior Dr working in NI, I told him on the day of diagnosis. He has flown home this weekend and came to my CT scan yesterday.
My 20 year old is in France for a year as part of his degree. I don't want him to come rushing home. I've told the other two today, we discussed as a family and feel that I will either go to france for a weekend to tell him, if that's possible. If not he will be coming home for a week in October and I will tell him then.

bloodbridget, thank you for sharing the info about your hysterectomy and chemo. I have a complex ovarian cyst, my CA125 came back within normal limits but I've been told the CT and MRI will tell more about the make up of this cyst.

Trumpton, I do hope your wound improves, my husband would also have been concerned over which towel to use!

ellanova5, thank you for your support. Even if we have different cancers the shared worries are there.

skap, well done on the pilates class. I usually work out quite a lot but am on exercise restriction following minor gynae op a few weeks ago.

Thanks to everyone and sorry if I have missed anyone out. Need to have a good read through and catch up.

Hi catnidge, and welcome. I also have cervical and endometrial cancer which was treated with simultaneous chemo and radiotherapy, followed immediately by four sessions of high dose brachytherapy.
I won't lie - it was really tough but I got through it. My last brachytherapy was two weeks ago last Tuesday, and I am recovering now at a more encouraging rate. I won't know the outcome of the treatment for three months so I'm concentrating on getting stronger right now.
As others say, waiting for the plan is one of the hardest times to get through so I hope you know more very soon.
Please ask me anything which you think I may be able to help with, either here or by PM.
Good thoughts to everyone else - respect for the pilates skap, well done.

Redspook, thank you so much for sharing. My son did point out to me that it may be possible that I have both endometrial and cervical cancer rather than one being the primary, so I am prepared (as much as I can be) for that.
I hope that you are able to rest as much as possible. If you work how much time have you taken off so far?
Also at the moment, I just can't sleep, hence the posting time. I have made an appointment with my gp and am wondering if I should request something to help me sleep.
Thank you so much for the offer of the PM, it's very likley I will take you up on it. All the best to you.

catnidge How did the DC take the news? Do you feel better for telling them? Sleep eluded me for several weeks in the early stages. The cumulative effect is very draining (without the benefits of baby induced sleep deprivation. I think most of us have been on here at ungodly hours of the night. My GP rang me when she got the letter confirming the diagnosis and was very supportive. She gave me some advice about sleeping and offered me drugs for sleep or anxiety should I need them. I actually found I slept better once the boys knew and I had a date for surgery (which was the start of my treatment).
As for telling the children I found this article changed my approach. My instinct was to shield them, even though they are adults and yet I didn't want them to feel pushed out. When we did tell them they were understanding that we had delayed it for a reason but insisted that they wanted to be as fully in the loop as possible afterwards.

redspook I'm pleased to hear you are turning the corner

Brassica I think I said before my swingseat is a much loved spot. I am planning a small paved corner in a sheltered but sunny position for next summer. How was Muse?

ellenanora5 I had no idea the drugs would have that effect on women who are post menopausal. How cruel.

Trumpton at the towel. I hope you managed to sleep better last night.

At the moment I feel like I am in the eye of the hurricane. I have recovered well from my operation three weeks ago and have yet to start chemo or radiotherapy. I'm acutely aware that those things will make me ill but I don't feel ill now.
In the last two years I have had a long list of health issues. I was diagnosed with Rheumatoid Arthritis five years ago and was managing that well. Then I got a heart rhythm disorder, then just before my cancer diagnosis I was diagnosed with a chronic lung problem. I started Pilates two years ago. I've never been sporty or spiritual and so I loathed yoga for the woo side of it. Pilates seemed to suit me. It keeps my joints moving and I find it helps with stress. My teacher is lovely and was one of the first people I told about my diagnosis.

Hello to everyone else.

catnidge, the first thing I noticed about your post was the timing of it.
Like skap I spent many an anxious hour awake between 3 and 5am, but it does get better.
I have been sleeping better since the treatment ended, and am now (according to the fitbit) getting over seven hours a night.
I stopped working two and a half weeks into the treatment when the side effects hit me like a train. I have now been off for five weeks, and am signed off until 14th October. However, I am considering going back for some mornings the week after next. I have a desk job without a long commute, so if my recovery continues at his pace I should be up to it. All part of restoring normality.
Keep talking to us x

Hi all, and catnidge sorry to see you here...hoping you get some answers soon.

I've started my prechemo steroids in preparation for my penultimate poisoning tomorrow. There was no phone call on Friday so I'm hoping that means it will be going ahead. I was up in the night for 2 hours with tum issues again....I can't wait for that bit to be over but given that it's been 3 weeks since i last had the perjeta, it's obvs going to be longer than that after my last treatment before normal service is resumed 😐 I haven't taken the codeine as yet, mainly because that has side effects aside from the constipating effect and I'm not keen to add in further complications if I've only got a few weeks now to have to manage the dire rear. I'll see how it goes.

Hope everyone is going along ok. trumpton has your exploding armpit settled now?
bridget are you post chemo at the mo? Feeling ok?
brassica I couldn't quite figure out when your chemo was due? Was muse good?
skap I remember that post surgery but prechemo feeling, when you're feeling good but know it's not gonna last, and what's more that you're volunteering to feel horrible, because we do all have a choice, albeit not much of one! You will get there lovely.
meercat hope you're ok and your daughter is bearing up. Can I ask, do you have the herceptin intravenously or as an injection? How's your hair doing now? I called in to see my hairdresser yesterxay and made an appointment for the end
of October which feels like a step towards normality. He'll just be tidying it up what's left if it by then. I also want an unbiased opinion on how it looks and subsequently how it's progressing. It was just really nice to see him. One of his clients commented on how lovely my hair was....so that's a result for the wig!
born I'm not even the teeniest bit envious of your fabulous holiday

I'm going to potter in the garden now and plant up some pansies into hanging baskets as I know I won't feel like it next week. I also have a lasagne and apple and blackcurrant crumble to make so better get started.
Have a good Sunday all.

WTF that sounds v positive for penultimate zapping on Monday! Sorry you are still getting bouts of dire rear, you will be so glad when you're over that eventually.
I am day 2 post-chemo, feeling pretty rubbish, nauseous, nearly everything tastes foul, yadda yadda. I'm taking it really easy this time with the aim of staying out of hospital!
Wishing everyone as good a day as possible.

WTF sorry to hear that the dire rear is still causing you problems. I hope it clears up quickly this time.

My DD is OK, up and down as is to be expected. The DH is in town this weekend and I don't know what that will mean. She is strong but it is obviously a hard time and all we can do is support her whatever she decides what to do.

I decided to keep the portacath until after the Herceptin is finished so that make it easy enough to have the treatment every three weeks. The hair is still shedding gently. There don't see to be any particularly thin patches but their doesn't seem to be much growth either. It could still be the effect of the chemo working itself off or it could be the Anastrazole. If the latter I hope it will settle, if not I will have to ask about alternatives.

I have had a proper cut for my hair and that feels so much better. It badly needs colouring but I will wait until I am sure that it has stabilised before I do that.

For those have sleeping problems, that must be horrible. On top of everything else. To some extent I have had the opposite and am sleeping for England and if never seems quite enough!!

I hope whatever results or treatment is planned for thios week goes well for everyone.

Hi all

Lots to catch up on today! Good to hear everyone mostly sounding quite perky or at least gallows humour-ish!

@catnidge the nighttime wakings tend to get us all (except meercat evidently!) and once you start on treatment some of the steroids can make you restless too. Personally I haven’t had so much of that that I’ve needed tablets but worth bearing in mind if you are afflicted.

@WTF99 we are catching up on chemos now I think. I had mine on Friday delayed from Tuesday, and now have flipped onto a Friday schedule as a result. Two to go for me as well now, a few days behind you. Mine are both single-drug weeks so a relative coast to the finish now I’ve done the last double one. But of course I have learned my lesson about counting chemos until they’ve been done. I hope yours goes smoothly tomorrow and the tum trouble effs off pronto.

Muse were fantastic, thanks to those asking. Two hours plus of music and we had excellent seats very near the front, tunes were top and we loved it.

@ellenanora5 those side effects sound horrible. Poor you. I hope you can somehow acclimatise to the drug and have them ease off a bit.

Enjoy the rest of your weekends peeps

skap, they took the news OKish. My eldest thought I was either pregnant(at 48), had bought a puppy or was about to give him some money! His girlfriend was on the mark and probably the most visibly upset.

My 17 year old seems shocked and I will keep a close eye on him. We lost my mum at the start of the year and he was with me when we found her. He is struggling with teen issues. I'm going to contact his school on Wed when I have more info.

Thank you you very much for the link, I've read it and will share it with the boys.

I feel very drained for telling them and not up to telling anyone else at the moment. I have a GP appt on Wed eve and will discuss sleeping and worries with her.

I'm sorry to hear that you've had a run of health issues. I hope you continue to recover from your surgery. It's a strange feeling being well, but knowing that the treatment may make you feel ill.

redspook, maybe I should get a fitbit to check my sleep!
Thank you for telling me about your treatment and how it has affected work. Although I know everyone is different, I am mentally preparing for the fact that I wil need to take some time off work. I'm going to get as much prep done Monday and Tuesday as possible.
I hope if you do decide to go back you ease gently back in and find your own pace.
Three months seems like a long time to wait for results. I guess a lot of waiting goes on.

wtf99 thank you for your welcome. Sorry about your dodgy tum, will think of you tomorrow and hope all goes as well as it can.

bloodybridget hope you are managing to take it easy and being gentle on yourself. I can imagine it is really easy to do too much.

Braasica my sister and her partner are seeing muse tonight. They actually got to the o2 last night and then realised they had gone on the wrong night. I am dog sitting for them. Glad you had a fabulous time. I've seen them before and they are a fantastic live act.

Many thanks for making me so welcome. All have the best week possible.

Hi all. Sorry I have been awol for a bit, I am having a bit of a weird time at the moment mentally - after six months of being strong the facade is starting to crumble a bit - and every time I go to post, by the time I have found the energy the thread has moved on! I have been thinking of you all though. I am nearly at the end of "active treatment" with only two more weeks of radiotherapy to go. The radiotherapy has been ok for those yet to go through it, I am really tired and my skin is finally starting to get red and sore but compared to Chemo it's a doddle (oh, apart from having to be at the hospital for 7 am in the morning Mon-Fri but an early start was my choice to beat the traffic). I have come off all online cancer support groups apart from this one as all I kept seeing were death announcements, a couple of women with inflammatory breast cancer like me barely lasted a year which really freaked me out. I now need to think about whether or not to go back to work at some stage, a decision I need to make soon but I can barely decide what to have for breakfast every morning! Hope you all have a good week x

Snows. Good to see you here but not so good to hear that you are not feeling so good.

I don't think it is unusual to struggle towards the end of treatment. Getting towards the end and starting to look ahead you sort of feel that you should be feeling better but it isn't that simple is it. While you have to cope with the various stages of testing, diagnosis and treatment you just get on with it but then, whether because the stress is cumulative and it builds up or because we let our guard down a bit, it all catches up. Someone up thread mentioned ptsd and I think that is exactly what it is. You don't have time to feel much while you are coping but later on it catches up with you

The early Rads sessions are exhausting. I opted for early sessions too thinking that I would have the rest of the day free for other things. That turned out to be a joke as I was too wiped out to do anything else.

I dont have anything practical to suggest other than to be good to yourself

Hey Snows nice to hear from you, but I'm sorry you're feeling low emotionally. It's so understandable, but of course getting towards the end of treatment "should" make us feel cheerful and optimistic, or at least we hope we will.

So sending you lots of warm thoughts and good wishes.

Hi all,
snows so good to hear from you and sorry to hear you're struggling. It seems like the end of treatment can be a crunch time for a lot of people. I suppose the structure of treatment gives us some kind of security even though it's very tough at times, and then suddenly we're launched into the unknown. I've had moments of dreading that. There's probably only one person that I can be totally honest with about those fears and that s my ex. We were together for 26 years. We're friends now, at peace with each other, and both romantically with other people. He knows me well and I don't feel like I have to.protect him. He probably understands better than anyone how I don't want to leave the children behind.

I think Its good to talk.....to the right person, who can understand and help you process and plan. I'm not surprised you're struggling with the return to work decision. Me too.
This is my 3rd brush with BC. After the 2nd time I felt traumatised, mostly because of the ghastlieness of the diagnosis process....all that waiting and fearing and not knowing. I had counselling through Macmillan. I'd highly recommend it.
I don't think I'll need it this time, but I might be fooling myself. Even though on paper my odds look quite good, If im honest i do think this disease will see me off eventually. I'm hoping later rather than sooner, but who knows.
I hope you get some peace and happiness. Much love.

Today was my penultimate chemo. All went well. With any luck 3 week's time will be my last. Battening down the hatxhes now in preparation for fays 7 to 10 which i think will be challenging if last cycle is anything to go by. But I've done it before so....
Hope everyone's ok. Hugs all round and sod 'mumsnetty'

WTF glad you got the second to last chemo ticked off, it's a shame you'll almost certainly be in for a rough time again. It's hard to face the likelihood of dying of cancer. I know in my case the odds are against me - but I hope of course that I will be lucky. It's good to have this space to talk about hopes and fears and struggles, I'm grateful for everyone's contributions.

Hello.. this is not a group I ever wanted to join. I found out today I have lynch syndrome and that means a very high risk of bowel cancer. My dad died when he was 40 of bowel cancer and all of his relatives bar 5 have had bowel cancer before the age of 40. I'm absolutely shitting myself (pun intended) I also spoke to the dr today about colonoscopies and I have been scheduled for one next week. I'm 28 so really should started monitoring 3 years ago which is a bit of a worry.

I was going to speak to my GP about my symptoms as I have pain, and diarrhoea, plus dark blood, weight loss and bloating. But I'm not sure there's any point seeing my GP now as I'm having a colonoscopy next week anyway. M

At least I know now that I'm not going to be fobbed off and I will be listened to

Thank you all for your very kind words, you made me cry in the radiotherapy waiting room this morning! I had a great chat with my radiation oncologist after and I have a psychologist apt next week. I haven't seen her since before my mastectomy so lots to talk about.

Glad Chemo is finally nearing the end for you WTF - it seems to have been a particularly long slog. I always smile when I see your name Bridget as that was my mum's name. Lots of hugs and good wishes to everyone else x

Hi there Hedley. I can tell from the time of your post that you’re up worrying. It sounds like a scary situation that you are in, and obviously very young to be facing it. It goes without saying that getting your symptoms checked out is the best thing to do right now, and that I hope all turns out to be something much less serious than you fear. As you know, the waiting period is horrible and we’re all here to listen and hold your hand. How did the Lynch diagnosis come about? Was it something you had to push for?

Hedley there are a few ladies on this thread with Lynch syndrome too - rollcall @Borntobeamum, @IgnatiusDunces and @Dulcedelecherocks (I think in your case Dulce you are still awaiting a conclusive statement on that?)

Snows, good to see you again and I’m sorry you have been feeling low. Your doc sounds as if he/she was a good person to mention it to and hopefully the appt next week will be a relief. Like others said, I’m mindful and apprehensive of what the end of treatment will feel like. I’ve been lucky with response to treatment and am also of a phlegmatic/not hugely panicky disposition so have not really cried about having cancer itself, more about the crappy side effects and impact on life, energy etc. But given that I wonder if there is a head of emotional steam building up that will come out sometime when normal life is meant to resume.

WTF and Bridget, it goes without saying (I hope) that we are all willing you to get excellent results and prognoses at the end of all this. You’ve both been through heaps so far, and you are most uncomplaining but if that’s out of a sense of Britishness or something don’t let that get in the way if you want a vent!

I'm awake at 3.35 with lovely hot flushes chiming in about every 20 minutes and making sleep fairly difficult. I’m also starving because the carb/pac dose on Friday has rendered all food tasting like mud and cardboard in my mouth, so I’m none too keen to eat anything. A day or two more and I hope it’ll be back on track. No dire rear which I know I am certainly grateful for.

Greetings to everyone else I haven’t mentioned.

snows well done for getting something sorted. I hope the psychology input really helps....I'm sure it will. And thanks for staying with us. I really appreciate your input and always look forward to your posts.

brassica I'll be joining you in side effect hellishness very soon (with added dire rear no doubt!) but we both know it passes so here's to it all buggering off very soon!

hedley so sorry to see you here in the nicest club you never wanted to join. I hope you get some reassuring answers soon. Here's a handhold in the meantime.