Cancer Support thread #78 - Newbies welcome

[MrsPnut]

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

@theresonlyoneofme & @FizzyOrange
it's natural to be worried about major ops if I can answer any questions about the up please ask. I'm not going to tell you not to worry I'm sure I did but I hope I can offer some reassurance.
Much love to all xx

Day 4 of 5 for me on the chemo and I'm starting to feel like a bit of a cancer fraud - I feel almost normal today, just bored. Everyone else on the ward is a lot more poorly than me which is making me feel weirdly guilty.
Still, I was bracing myself for 4 or 5 days of pain and ectoplasmic nausea in a chemo hole, so this easy ride is very, very welcome so far.

It seems like it's really hard to know what to expect on this roller coaster. I spoke to a friend earlier who had a double mastectomy on Tuesday - she went home the same day and was in no real discomfort, so much easier than she had feared. And then on the other hand sometimes it just smites you down. You never know do you, that's part of what is so hard about it all.

@Babamamananarama really pleased to hear you doing well whilst incarcerated. For me you have summed up exactly how I am feeling. I am doing physically quite well at the minute but it has not been a good weekend mentally, although no one would know. I am beyond petrified of the stem cell transplant and all the what ifs before during and after.
The thing I keep reading here and elsewhere is so true everyones reaction to treatments are all different. As is how we cope ( or in my case not cope) mentally.
I do hope your continued stay in hospital is positve but will wish you a speedy discharge home to your own bed.x

@thereisonlyoneofme

Hello there, it’s almost midday where I am and I’m thinking of you getting ready for hospital so I just want to say you’re in my thoughts and I’m willing you on from a long way away.

Keep in touch over the next few days once you are feeling up to it even if it’s just to have an online natter to help pass the time.

We’re all with you in spirit 💐

Thinking of those facing surgery and treatments this week. Wishing you all an uneeventful experience and a swift return home.x

@Babamamananarama That is my feeling exactly. I got through treatment and got off quite lightly on the side effects. Then I ended up with the sore broken down skin and am on day 19 of being in bed.

@thereisonlyoneofme Good luck for your surgery.

This last cycle really laid me out flat and I can only think it's due to the bisphosphonates (Zoledronic acid) that I had my first 6 monthly dose of. Anyone else have a lot of issues with that? I've had a lot of bone pain and although the nausea is not much different I just cannot seem to eat much - even swallowing water has been difficult. I've lost 9 pounds since last Monday (but I had to lose so not a total lose-lose!).

I'm hoping to pick up this week but it is interesting how chemo hits differently - partly the different drugs and partly different people. I keep thinking 'if this comes back - I just can't do this again.' I struggle a lot more with actually being ill than the idea of the illness. I couldn't do this long-term.

But I think it's turning and I'll catch up properly when I'm a bit brighter and less overwhelmed in self-pity! But just wanted to ask about your CT @MarthasGinYard ?

@thereisonlyoneofme

Good luck for the de-bulking! Mega kudos for being brave enough to go ahead with the op. Fingers crossed all goes smoothly and you'll be back home with ddog soonest.

Thinking of you here too @thereisonlyoneofme

@thereisonlyoneofme thinking of you today and wishing you well xxx

Oh damn and blast! I was just getting to the end of a long checking in post and have lost it! You must all assume that I said all the right things to everyone!

Especial good wishes to those in hospital, waiting for diagnosis, results and treatment, and having pain and other nasty symptoms and side effects.

I spent the whole day at Barts on Saturday getting blood tests and then having a transfusion - two units! My haemoglobin was really low, so it's just as well I did ask for the tests.

Blimey well done for pushing for the tests @Bloodybridget, really hope you're feeling the benefit of those two units now.

Quick breast cancer questions for those who had/are having chemo then surgery then radiotherapy- how long is it usually between surgery and radiotherapy? (It's looking like it'll be about 6 weeks (from my 2nd op) here because my next onc appointment is in mid April. I just want to get on with it but don't want to be pushy about bringing the appointment forward if the radiotherapy can't be sooner in any event). Also if you had hormone therapy and/or bisphosphonates, did you wait til after the radiotherapy to start those?

Well they let me out a night earlier than expected so I am home - and thrilled about it. Very efficient finish and discharge - I think they needed the bed.

Good luck to everyone else lining up for their treatments. Wishing you all an unexpectedly easy ride.

Lubballoo

I was 7 weeks. Your surgical wounds need to heal enough to tolerate the radio. I think 6 weeks would be about right.....Christmas got in the way for me.

Hope everyone is ok / sending positive vibes.

I had my port inserted today which went smoothly but now I'm home and I'm so uncomfortable. I have had more pain and discomfort tonight than the entire recovery from my mastectomy! Think tonight is going to be a bad one ...

@Acinonyx2 I have got my first zolendronic acid infusion this week (I think) so I will report back whether it adds any new symptoms. The Herceptin injection I have three weekly just depresses my appetite enough to help me lose weight. I hope there won't be more bone pain as I am just getting over last week's flurry and am back on my bike in the spring sunshine.

@Lubballoo it seems you get follow up about two weeks after surgery to explain the results and plan your next treatment and they book your radiotherapy to start within 31 days of that. My planning CT scan was delayed a week because I still had a leaky wound. I also started the hormone blockers after that appointment but they have taken ages to schedule the bisphosphonates. You do have to get a dental check and a kidney function test before starting too.

I am a bit happier today as my aches have died down with a good rest and the pain in my arm didn't kick in when I cycled ten hilly miles today. I am still holding back from doing half of what I want to do. It seems I am stuck with this broken version of my body when I just want the old one back. I am grateful to be getting stronger slowly and I know I am lucky the cancer has been removed. But it is taking patience and fortitude to deal with it all. I can't help thinking back to that moment in the clinic when my life changed forever. No warning and no time to prepare myself and no going back to how it was before. I shall set myself some easy goals for the spring. I like working towards a target!
@thereisonlyoneofme we are all thinking of you and hope today went well. You have a big virtual family sending you warm waves of positivity

Best wishes to all having tests and treatment this week
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Topofthecliff I must say it is ever so inspiring reading about you cycling around and being so active. I am right at the beginning of the journey and feeling really lost in terms of what my body is able to do and what it will be able to do again at some point. It's such a massive adjustment going from being fit and well to so fragile. I'm really hoping the SafeFit is going to help me find some strategies and perspective.

thereisonlyoneofme good luck - thinking of you.

@thereisonlyoneofme hope you are able to check in with us and let us know how you are getting on.

@TopOfTheCliff I so much want to get back to my 'stuff' - it's very hard being so useless and bored all the time. I've got writing that I can't take sick leave for but just cannot focus on at all and then there's my garden and music and I just want to stop lolling about like Beth from Little Women.

I'll stop telling you not to overdo it because I know you'll ignore me - but I suspect you will build your physical stamina back up but it will take more time than you'd like.

I also didn't take my own advice about ringing the emergency line. My bcn told me off yesterday for not going in at the weekend and 'suggested' I come in for some checks but I declined - which may be misguided but I'm improving and I'm so heartily sick of being poked about. For the added 2% survival I am not having the bisphosphonates again - my legs still hurt .

They think I'm just unluckily drug sensitive - in general - to every blasted drug. She asked if I got sick when I was pg - and I did get pretty sick and that's something they've noticed tend to go together.

@Miava Glad the port went in smoothly (mine did too) but sorry it hurts now. You should probably tell them. I had very little pain the first few days (they even left the needle in for chemo next day which sounds grim but actually very doable) - but the pain kind of build up over the next few weeks and was also around and in my shoulder - as though something had been upset in there. The incisions didn't heal for 2 months (healing can be slow on chemo) and got a low grade infection (i.e. no temp) - so worth keeping an eye on the pain and where is it etc. I've only heard from a handful of people on this but the discomfort experienced has been really variable.

Was it @HumphreysCorner who liked the Rocky Horror Show? I do too & my current look is a chubby brunette version of Riff Raff! With a little work I could convert it to the Keith Flint Firestarter look I reckon I have actually ordered a couple of lowkey hairpieces to try while I'm just languishng around with aches & pains after first of three Doxetacel/Pertuzamab/Hereceptin chemos & waiting for mid-chemo scan tomorrow.

Do update when you can @thereisonlyoneofme - thinking of you.

Hope your night wasn't too bad in the end @Miava.

I'm also just going to order some MooGoo skin products for my skin, scalp & try their natural deodorant. There's 15% off for new orders. It has a good reputation for skin comfort and is used in hospitals in Australia for chemo/rad patients where it was developed. I also came across a topical treatment called StrataXRT for radiation dermatitis developed by a Swiss pharm company which was highly recced & thought of you @MrsPnut - any improvement?

For everyone on the thread, a bunch of virtual spring flowers

Haha HauntedDishcloth it’s a look for sure!

My friend who is on maintenance chemo uses the MooGoo skin care range and really raves about it.

@HauntedDishcloth Thanks for thinking of me, I think I might be turning a corner. I am currently using medihoney barrier cream and ovestin cream at night. I sent my oncologist a number of studies that showed topical oestrogen creams did not affect early stage hormone +ve breast cancer so she relented and asked my GP to prescribe it.
The medihoney is brilliant, it’s soothing immediately which helps.

PS, RHPS is the best film ever. I have introduced both kids to it at different times and they have gone on to make their friends watch it too.

Will catch up later but just to say I went for an ultrasound earlier and the lady struggled to find the tumour. I had to show her where it was, It is so small now, she showed me the scan and the original one when it was massive. Can't believe it.

HC x

Thanks @HauntedDishcloth - I actually slept which was amazing (maybe the sedation drugs still in my system?). And I appreciate the pain management advice @Acinonyx2 - I would say it's more uncomfortable than really painful and paracetamol and ibuprofen are helping. I'm in hospital tomorrow so hope that taking the packing/dressing off and (after chemo) getting the needle out will improve the feeling.

And wow! @HumphreysCorner that is amazing - I bet you are so pleased.

Hope everyone else is ok. Chemo round 1 for me tomorrow. Trying not to think too deeply about it but obviously dreading it but I hope once it's underway it'll be ok. x

Hi All,

Not been around for a long time. Hope all is well?

I'm 38 and was diagnosed with breast cancer in Jan last year. I've had surgery, chemo, rads and next week is my final herceptin! I'll be on tamoxifen for at least 5 years. It's been a long road, but I am glad to be finally finishing active treatment. My hairs starting to grow back now and it looks horrific as its at that stage where you cant do anything with it and its so thick with chemo curls so it's very like pat sharp back in the early 90's :) Hope all is well and you're being kind to yourselves xx

@Nonotmenori thanks so much for dropping in to share your good news. I bet you will be pleased when the hairdressers reopen. I am halfway through my Herceptin jabs so following 5 months behind you. It’s a long old slog for sure!

@Acinonyx2 thanks for encouraging me. My arm pain has settled with relative rest and I just have a few shooting pains from the nerves now. I have surprised myself and the physio by being amazingly good at leg presses! I can lift 140 kg already and nearly beat his best. I have visions of becoming one of those weird bodybuilder types with oiled muscles! Well now I am a pensioner I will need a hobby.

I officially retire next week which is freaking me out a bit. Mainly because I was so suddenly snatched away from work and never got a chance to say goodbye to my patients. I have to write them a goodbye letter which will be emotional. It really is the start of the next chapter of my life. I just hope it’s a long one!

@HumphreysCorner I’m so glad to hear your lump is shrinking. Mine disappeared completely with chemotherapy. It makes all the hideousness worthwhile.

Best wishes to all.
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