Cancer support thread #77 - newbies welcome

[InOtterNews]

I couldn't see new thread so here we go...

Welcome friends old and new, to the most supportive thread on Mumsnet. Everyone is welcome whatever stage you're at (fears, diagnosis, treatment). Introduce yourself and say Hi

Good luck to everyone having treatment this week. Hugs to all - especially if you're feeling rubbish (physically, mentally, or waiting for results - ugh)

Hope you managed to get some sleep @BitOfFun and that you feel a bit better today.
Hi to everyone I havent said hello to, wish none of us were here but very glad to have your support.
I go to see the consultant tomorrow to disciss the finer details of my diagnosis and any treatment plan. I already know the only cure for this rare blood cancer is a stem cell transplant. The thought of this makes me feel sick to my stomach as I know the odds aren't good.
The best I can hope I think is to be managed for a wee while as my quality of life is still good before it comes to that.
In my head I am hoping the stem cell can be put off until I get my youngest through uni. I feel very guilty for landing this on my kids and husband. We both lost our mothers relatively young and I so hoped our kids would have us for a while. There are only the 4 of us no extended family.
Sorry for the pity party but this is the only place I can say how I really feel.

@Alittlewornout the guilt is terrible isn't it? I can't believe how much pain I've caused to the people I love. I think that's the worst part for me. Talking here has definitely helped. Even just writing it helps a little. I'll send you a little Irish luck for a stem cell match 🍀 I've had a few friends be donors so that person for you is out there.

I've got a busy week. Work today and all next week and weekend except Tues when I'm getting my Covid vax and Wednesday when I meet my oncologist. I don't really know what to expect on Wednesday. But it means things are moving on. And the sooner treatment starts then the sooner it ends and I can try to put me back together again.

@BadEyeBri the guilt is just awful even though rationally we know its not our fault. Thank you for the Irish luck I need all I can get. Sending you positive vibes across the Irish Sea from Scotland for your appt on Wedneday.
Despite the tiredness from lack of sleep and my chronic anaemia, DH and I had a lovely 3 mile walk along the coast which did lift my mood. Its much easier to be a little more positive when the sun is out its the middle of the night demons that are hard to handle.
Will definitely be taking a wee sleeping tablet tonight in order to face tomorrow.
Hope everyone else is just about doing ok today?x

Hi everyone,
I'm sorry I haven't posted for a few weeks!
There are quite a few new names here, so quick intro: I'm 39 years old, diagnosed with stage 3 invasive ductal carcinoma in August. Lumpectomy, node clearance, dose dense, accelerated chemo, 15 fractions of radiotherapy. That's how you summarize a person in cancer speak, right?!

Anyway, sorry for the radio silence. I got very tired at the end of chemo and during radiotherapy. But I'm here to tell you that I'm done with active treatment, apart from ten years of hormone blockers etc. My last radiotherapy session was five weeks ago, and since then:

• my energy has mostly come back
• I have a full head of short hair after my semi failed cold capping
• I've broken the rules and dyed it because the grey was kind of freaking me out
• my eyelashes are all back (just a bit short)
• my eyebrows are better than before
• body hair is back (damn!)
• I'm back at work full time
• I've had a pay rise (a pity pay rise?)
• we've put our house on the market
• we've sold our house (after two days on the market, what a shock)
• we've bought our/my absolute dream home in beautiful Canterbury
• I've had a Covid vaccine

The point of this list is this: During treatment, it all feels so impossible. It's such a confusing and scary and horrid time. The side effects. The fear. The side effects. And panic. And did I mention side effects? And...er... side effects?

But there is light at the end of the tunnel, and there's life waiting for you to rejoin and enjoy.
Hang in there, lovely ladies

High five KentishMama

[quote Bloodybridget]@Balkanscot good to see you again, and I really hope the scan gives you the all clear. I do understand the anxiety, I'm sure I'll be feeling just the same when I'm through with chemo in May. If your scan is ok, will that be the end of treatment?[/quote]
Thank you. If the scan gives me the all-clear, apart from being on Examestane (hormone tablet) for some time to come, that’s it. I will be having an injection of Zoledronic acid every 6 month to protect my bones from crumbling to dust. Because of this I am also taking chewable vitamin D3 & calcium tablets (Adcal). Which is great as I am one of those wimps who can’t swallow any tablet bigger than a flea. 🙄 You should have seen me when I had to take the myriad of various-sized tablets during my chemo, comedy moments aplenty. And the bastard antibiotic (for neutropenia sepsis) tabs were absolutely ginormous!

I read in one of your previous posts about neutrophils throwing a strop. Mine were often not too cooperative, either.

@KentishMama 🎉 So, so pleased for you - what a relied it must be!

@BitOfFun bugger re: migraine pain & sickness, has it subsided even just a teeny tiny bit?

@KentishMama lovely to hear from you and as I have the same diagnosis it gives me hope. Apart from the fact I'm triple negative and stupidly googled it and it's more likely to return within 5 years as it's more aggressive.

How are you today @BitOfFun?

@Alittlewornout thinking of you today for your meeting.

@balkanscot I understand what you mean about the little buggers. I missed one week of chemo and convinced myself it must have spread in that short time.

@backformore I still have my Christmas gel nails on and it seems to have saved my nails as they are looking just fine. My nails are my fave thing about me.

@Bloodybridget cannot wait until tomorrow when I hopefully get my transfusion and start injecting myself. This time next week I'm hoping for energy and a normal heart rate.🤞

Have slept almost all the weekend, it's been like waking up from anaesthetic and feeling drugged. Could be because I took an extra anti sickness tablet or because of my haemoglobin and white blood cell levels.

1 good thing today is DS got his secondary school place and now the battle to get him on the bus as the academy isn't in our catchment area by 0.7 of a mile but DD1 went there and DD2 still does. 1 bad thing is my boss hasn't paid my sick pay and doesn't really know why.

Anyway, good luck to results, investigations and treatments.

Big wave to everyone 👋

HC x

P.S. we need a new thread soon.

@HauntedDishcloth sounds like we have a similar MH history.

Nails - I'm using Polybahm and another Dr organic nail oil. I foresee problems though as the weird bit grows through.

Many sympathies to all with cannula/PIC issues. Just hate that stuff!

@HumphreysCorner I slept a lot this time too - I think it's a combination of escalating EC fatigue and the cyclizine added as anitnausea meds. I just cannot get the antinausea thing sorted. I've basically just been having a pity party for the last week. Chemo 7 is the last before surgery. My notes say that I am 'tolerating chemo well'. How in holy hell did that come across? What would it look like if I wasn't tolerating it 'well'??

@KentishMama that is indeed inspiring to hear.

Hello to the new posters I will be following your progress - hope everyone else is soldiering @BitOfFun hope they get your nasty nausea sorted it is indeed a misery - it's surprising and disappointing that these things are not more straight forward - keep pushing if you need to. I keep asking for more guidance but it just never seems to quite hit the spot.

Greetings all
Good to hear from @KentishMama again. You just flew through treatment. You started a month after me and finished three weeks before. I’m in a similar position now looking round and thinking that’s all done and life goes on. I still need Herceptin and bone infusions and anastrozole but the whirlwind that is active treatment seems to have moved on and left me.
@balkanscot I think I just tell myself “it’s gone! “ and don’t entertain any notions of it coming back. Last night on Radio 2 Dr Rangan was talking about positive affirmations and that is exactly how I cope. I am well! My cancer is gone! I am getting better every day! As my wise friend said critically I see what I want to see. But it makes living from day to day much easier than living in fear.
I just read Doctors get cancer too by Dr Phillipa Kaye. She had bowel cancer treated in 2019 and it’s a very good read. She puts into words those feelings most of us can’t articulate. I feel compared to her I am a lazy arse as she worked through her chemo and wrote a book as well. I have just sat here knitting and playing online. But I suppose she needs to earn a living and I don’t.
Today I am trying to sit quietly as yesterday I went for a twenty mile bike ride and I am paying for it with a swollen armpit and a sore arm. Hopefully it’s just the radiotherapy aftermath not the onset of lymphoedema. But time will tell.
Regards to all. Hoping for good results and minimal side effects this week.
Top

@TopOfTheCliff Apologies for overtaking you - I was in a bit of a rush . On a more serious note, the accelerated chemo regime meant that I was done in 16 weeks rather than the more normal 24. I paid for it, I got ever so exhausted, and then started radiotherapy 6 days after my last chemo. Idiotic, really. But I am so glad I am done now!

I like the idea of using positive affirmations post treatment. I am well! The cancer is gone! I am recovering more every day! I'll try to use that, too. I think it is a good skill to have - being able to see the positives, or whatever it is that you want to see.

So glad to read @KentishMama and @TopOfTheCliff’s encouraging posts. My breast cancer was diagnosed last June and I feel like the treatment’s going on for ever! I start radiotherapy this week (15 fractions over three weeks) and, as I’ve just started to feel more energetic post-chemo and surgery, I’m hoping it won’t wipe me out too much. Then it’s ‘just’ immunotherapy till September. I feel like those marathon runners you see crawling over the finish line...

I’ll definitely try the positive affirmations to keep my worries about recurrence at bay. My chemo wasn’t as effective as the oncologists hoped it might be, hence they’re throwing everything at me post-surgery, which is scary but reassuring, if that makes any sense at all?! Someone recommended I read The Cancer Survivor’s Companion by Frances Goodhart/Lucy Atkins, which she says might help me manage the uncertainty, so I’ll give that a try.

Good luck to everyone with appointments, results, treatments and needle-related aggro this week x

Has anyone had any experience with NHS pensions ? I paid in for 23 years and I'm wondering if they would pay out early on grounds of I'll health/ limited life expectancy.

So pleased to hear your news @Kentishmama and @Topoff.
My news is rubbish I have a high risk of developing leukaemia so its a straight referral for a stem cell transplant. May also need some holding Chemo so will have a month in hospital followed by a few weeks at home followed by 6 weeks in hospital if I get a donor.
Looking at kids being haplo matches if required. Telling them was awful but they have been amazing right away said they would get tested.
Breaking covid rules tonight as having my pal around. I need to draw up lists of what needs done bought etc.
My head is in a total spin as I feel normal! Only went to the GP with menopause symptoms and came out with this!!
Thanks for being there lovely ladies, this thread has helped me enormously.x

@Alittlewornout Sorry to read your news I hope having your friend round tonight helps x

@Lizdeflores it really did thank you. She is very practical and we started a list of things I will need. Have to say all my friends I have told have been amazing as has my poor husband who is just shell shocked.x

@Alittlewornout that's a lot of news to take in. Glad your friend came round.

Heading to the hospital in a bit hopefully for a blood transfusion. Just warming my injection up which I will do in a moment.

HC x

😂 failed with the first injection. Better luck tomorrow.

Morning, hope everyone is doing ok.

@Alittlewornout that sounds like a lot to process, glad you have a friend to support you.

@KentishMama and @TopOfTheCliff Congrats on finishing active treatment. It feels like a big step.

I had my final brachytherapy on Friday and if I’d just had that cancer then that would have been the end of active treatment for me. It’s been very tough but actually only been about 10 weeks.
I’ve also arranged a second opinion with another breast surgeon, he’s actually the head of the breast oncology service at my local hospital where I was diagnosed. I don’t have as far to travel for the appointment either.

It's great to read about all you fantastic women finishing your active treatment. Really given me a boost. Thank you for posting.

Liz I'm NHS too and have been looking into this. I found this useful The short answer is I think it does.

I had a PET scan yesterday and saw the surgeon. The preliminary results are they don't think it's spread distally but is in the nodes. I need a laparoscopic procedure on Fri to check for spread to my liver etc. It's oesophageal cancer rather than gastric, which is not great news. The surgeon was really nice and will refer to the oncologists.

I'm a massive bag of anxiety and keep crying all the time. I just cannot believe this is happening and I feel so guilty for putting my family through this. I'm trying to stay positive but there are times when the fear is just immense and my thoughts spiral. I'm going to try the books that have been recommended but if there are another tips to get though this, I would be open to trying pretty much anything!

Hope you are all doing ok and I'm great full to be able to post here.

@MrsPnut how was brachytherapy? Mines is about 7-8wk down the line.
One down, one to go. Good luck with the second opinion. Given your fairly unique situation it's probably worth getting a range of ideas.

[quote BadEyeBri]@MrsPnut how was brachytherapy? Mines is about 7-8wk down the line.
One down, one to go. Good luck with the second opinion. Given your fairly unique situation it's probably worth getting a range of ideas. [/quote]
It was tough, much harder than radiotherapy.
I didn’t have an anaesthetic though which you would for cervical cancer but everything is swollen and sore. I did only have 3 fractions though.

@quinin Thanks for the link I will read that after home school ( last week🎇🎉)
The Cancer mum guilt is terrible but remember this is not your fault, you did nothing to deserve this. I'm rubbish at links but if you Google cancer mum guilt there is quite a good a article on the Jennifer Young site.
I finding a book of by Saskia Lightstar 'The Cancer Misfit' really helpful during recovery from treatment.
I hope everyone has a good day x

@MrsPnut I did hear someone mention flamazine cream for post brachy. It might be worth asking about?

@quinin

The best tip I have is to ask your GP for some anti-anxiety meds to help cushion you through the physical effects of this horrendous shock to your system. It's routine in other countries. They won't turn you into some drugged up zombie, just make it that bit easier to cope with the whirlpool of emotions and eat and sleep with some degree of normality.

They were a life-saver for me.