Cancer Support Thread 94 - Sweetness and light - the two noblest of things.

[LemonDrizzle10]

@tilllly and Daisy.

@MothralovesGojira Mmm... pretty knackering to be truthful. Will be asking for a continuation of phased return in September I think!

Got 12 more hours to do this week and 25 next. Yep.. tired.com 🙈

Hows tricks your end? How was DC Iceland holiday? No erupting volcanoes I hope ??

@Enigma52
Definitely ask for a continuation from September as it's ridiculous to expect you to go straight in at the deep end when the new term starts. As tiring as it is, it is giving you a good indication of what you can manage going forward but going from 8hrs to 12hrs to 25hrs seems a tad unmanageable and that they're asking a bit much of you? Are you in a union?

DC's trip to Iceland is in 11 days. Their girlfriend arrives from Iceland this Sunday so we're all super excited. I have added 'natural disaster' cover to their travel insurance (just in case) as the latest eruption hasn't happened as expected. The volcano zone is a fair distance from Reykjavik which is far away enough not to do much damage but near enough to turn the sky bright red at night. Luckily it's not a big bang volcano (like Mt Etna at the moment) but it opens up long chasms in the ground several miles deep and long. On one hand I hope that it stays quiet for their trip but on the other hand I think 'Gosh, how exciting!!' 😆
The biggest risk is that the lava flow hits the main power station or the lava reaches the sea both of which will stop air traffic for a while. I check the live volcano watch cameras every day and managed to catch the last eruption as it happened which was spectacular. I'm not too worried about the volcano as I'm more worried about how DC will manage their diabetes on their own tbh.

I've been twice before so know what to expect travel wise and how to limit myself activity wise. We are going for 3 weeks so lots of rest days in between things.

Hey folks! Well that’s my picc line out - lasted 5 months - am very impressed! It’s been an absolute godsend! Nephrostomys I’m getting used to, just waiting to see what happens with clinical trials if they find one.

I finally have a surgery date for delayed reconstruction where delay was said originally to be a year from Dec 21 on 6 August 24. Didn't ask when the years wait started from. 😂Very happy to finally have a date though they did say it may be cancelled. Go in on 17 July for assessment, have to stop Tamoxifen from now. Good job I did our summer holiday already. Trying to make garden perfect now before then, did 3 hours with DH tonight, we are getting there. DD back from her second summer holiday tomorrow. Hope everyone is doing as well as they can be. Feel quite weird to be excited about an operation but I hate having one side chopped off and want it back. Though am a bit nervous for stomach after. At least DH loves playing nurse so will be well looked after. If anyone doing surgery changes mind about reconstruction you can ask to go on the list later, they don't put you on until after chemo, radio then 1 year in our area to get on list and list is about 14 months. BMI needs to be under 30 here. Mine is at 24.9 atm. Not sure how long recovery will be they told me 4 months, hope not but last one they said 6 weeks and I was swimming after 3 weeks. I have to reschedule dentist and not sure how far back to push it.

@penguinsa so pleased for you. You gave me some sound advice a few weeks ago and I have followed your progress on here. Hope it all goes to plan for you now

Hi @Penguinsa . I’m at 8 weeks out now from my immediate and & diep and would say that I can do day to day life without too many restrictions (still avoiding v heavy lifting for a little while longer). The first few days were really tough and I would say you’ll need lots of help for 2 - 3 weeks. But it’s absolutely manageable. My husband was great at looking after me. Just be careful of over-doing it too early. I’ve been pretty careful / lucky and have had no issues healing.
It took me a couple of weeks to be able to stand up properly straight and my tummy felt tight for longer than this. I kept as mobile as I could throughout. I would recommend a v-shaped pillow for sleeping! You’ve given so much good advice here, please ask if you have any questions.
With regard to the dentist, I would say push it for a good 5 or 6 weeks, mainly just to not feel uncomfortable in the chair. I did wait until 6 weeks before driving again, but could have started earlier.

Thanks very much somewhere and nomorebear hope you are both doing as well as can be. That's really useful re timings nomorebear I did push dentist back to end October (was checked in January and doesn't feel like anything wrong to me, hygienist I would like before but apparently they have left and they don't have another one yet so on waiting list, I normally move appointments so have both together so will likely move dentist again and good to know roughly how long will be). I was a bit nervous about the 4 month recovery but first surgery and second surgery they said 6 weeks and in both cases I was swimming after 3 and just the first week had pain. I think one I had to go in once due to a swelling but drained in 5 mins and out again. This is obviously a much longer surgery but have a female surgeon and they are normally more careful so hoping no complications and quickish recovery. I am very lucky that DH is an excellent nurse and seems to enjoy that role, definitely got cancer the right way round here as I hate playing nurse and am much better as the patient.

londondragonite* *hope your mastectomy went well.

I have started the equivalent of nesting with surgery looming and trying to get house and garden totally perfect before op.

Sorry to crash this thread but if anyone is looking for the Stage 4 thread I've just started a new one here: https://www.mumsnet.com/talk/life_limiting_illness/5117921-living-with-incurable-stage-4-cancer-this-thread-is-for-you-thread-3-in-memory-of-tilllly-and-mowly?latest=1

The last one got completely filled up so I can't link on it.

I’m still merrily going along deluding myself.

the folfox has been horrific and I’ve only had four and eight more to go!!! Has anyone had it? The week after is just awful I want to put a pillow over my head and can’t think rationally, then after 7 days I suddenly feel less nausea. My tree trunk leg has gone down so I like to think the chemo is doing something.

I have my 10th chemo tomorrow and I think I'm gonna forgo the last one the week after. My nerves in my wrists are completely shot and mentally don't think I can put myself through another week. Tbh I'm surprised to of managed 10/11. Not sure what my oncologist will say on Wednesday when I see them to sign my brachy consent forms but I'm so mentally traumatised I hope she will understand.

I also still have 10 more sessions of radiotherapy to go before my 1st brachy on the 30th.

@catmomof3 I missed my last cisplatin chemo and nobody was too worried so I'm sure it will be fine.

Sorry to hear your struggling but your so close to the end now x

@catmomof3 I missed the last 4 cycles of chemo because the neuropathy was so bad I decided to stop. It had still worked - nobody knows what the futures holds - but it had got rid of the huge grade 3 tumour and cancer in multiple lymph nodes I'd had on diagnosis before doing chemo.

I spoke to various people at the time and as one of them (knowledgeable person) said, the number of cycles is not personalised but done according to studies and is still a matter of some guesswork.

I discussed not doing the last Pax with my oncologist and she was fairly laid back about it saying there wasn't much difference between 11 and 12. Also got terrible neuropathy and mental health struggles in chemo, mainly from steroids and stress of dealing with la re SN child. In the end I did the 12th as I had initially got the standard chemo shortened from 6 cycles to 4 due to anxiety before starting though oncologist reckoned success rate not much different but said controversial and as I decided it would bug me if I didn't do it. It was actually much easier doing the 12th as last one, was at 90% due to neuropathy and I had had 4 weeks off during chemo as neuropathy too bad to continue. I had some neuropathy 2 years on but it's manageable. I am pretty numb on my wrists but that helps with cannulas. Fingertips tingle but can do all activities fine, do need to let them know about neuropathy as it can be permanent and think it's worse if you get it in your feet more as walking can be very difficult. I took ice for my feet and hands each time. In the end I just thought I've done this 11 times can do this a 12th but don't think I could have done more and also would be worried about long term damage with more. I still have half my head tingling from it which is annoying. My oncologist reckoned first three don't do much then rest is proportional roughly.

Yes I’ve started to get a thumping headache at the back of my head and I wonder if it’s neuropathy. My chemo is the one. That makes you react to anything slightly cold it’s horrible, the tingling in my hands and feet. I’ve only had four but the side affects are vile compared to the original chemo.

I would get a thumping headache checked out, tell chemo line about it and your neuropathy. What I have is down half of head at front from nose is like constant tingling, heat, bit like a never ending sinus infection. I was worried initially it had spread there but CT head was clear and sinus meds don't work so think it's neuropathy as started in chemo. You do need to drink a lot on chemo, at least 2 litres a day but that Pax one is bad for neuropathy. I chose it as better for heart.

@Penguinsa just to say I was driving 4 weeks after my diep reconstruction. I’m 3 months on now and for me the turning point was 8 weeks. I had to wear a binder around my tummy and a surgical bra 24/7 for 6 weeks so there was a bit of transition but by 8 weeks, I was feeling a lot better.

Thanks Breakfast that's really helpful. Glad to hear you are recovering well.

@catmomof3 well done on getting through so much chemo. You should remember how worried you were and be really proud of yourself!
I had my first chemo last week and I think my worst side effect is blurred vision (which still is a problem). And the way not being able to focus properly makes me feel a bit vague. Or at least I assume it is related to the vision, could just be another side effect.
Felt wired on steriods, mostly just tired now.
Also my wrist feels very bruised and sore where the cannula went in - was wondering if that had to do with the daily injections?

Stupidly I missed the text message saying my chemo was cancelled today and I’m now in Costa for three hours as I treated myself to extending my cleaners hours. My neutraphils are 0.6 and I’m terrified as I was in central London yesterday on the tube. Has anyone had them this low is there anything I can do?

My neutrophils have been low three times- my lowest were 0.8. As I didn't know I'd been out and about and I didn't get poorly so hopefully you won't either.

Did you have a mask on?

I saw my oncologist on weds who was fine with me cancelling chemo, my neutrophils were starting to dip so she said it's likely they would of cancelled it anyway as I have my first brachy on the 30th and if they get any lower I'd need a general instead of a spinal. Not sure whats worse in all honesty as dreading the whole thing anyway.

I have 5 more radiotherapy sessions left thank god, the lack of energy is awful and I get the jitters every time I do something normal like try and wash up as it drains me so much. Trying to eat whatever to give me energy but it's hard, can't wait till it's all over with so I can just focus on gaining my energy levels back slowly.

I have an MRI tomorrow at 8am I should be pleased but it feels too early for me. I’ve only had four chemos as Friday was cancelled. I don’t think my oncologist thought it would come through so quick I only saw him last Wednesday

That's good to have it through so quickly Each though agree on early starts, my surgery says 7am though I bet they keep you sitting round until 4pm or so. Says no phones or laptops and says just bring a book. I don't really read books though did get one I could finish.

Those who did diep if anyone is still around did they say when phase 2 would be. I asked about flying and swimming and they said 3 months, 6 weeks minimum for flying. Thanks. Though at least went on holiday already so that's done. I never really expected to reach top of the list as they kept adding to it. They did try and fail to call me other day and didn't leave message, hope there's no issue though would have thought they would have sent via my charts if was. They are keen on phoning there, 8am they called me to check was coming for pre op, woke me up. 😂I tend not to sleep until 4am. I am glad it's a general, I then don't think about op. I always take forever to come round from them though and scare them, in my mastectomy op I thought I was on holiday in Australia remember vaguely coming round saw a hospital then was like nope I am going back on holiday in Australia looks rubbish here and was like that for quite a while before came round.

I actually had some happy (ish) news. Oncologist thinks my blurred vision was caused my a reaction to the anti-sickness meds, so I’ll get different ones for round 2. And the pain in arm is an infection.
These were my worst 2 side effects, so happy to hear they shouldn’t re-occur.
Got a CT scan on Thursday. Nobody expecting to find any spread, but they just want to confirm. It’s hard to not worry when every test so far has showed bad news.