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)

@thereisonlyoneofme tough situation indeed. I suppose you are getting all the advice you can from people like Macmillan? Hoping there are sustaining if not curative treatments going forward and that we all get a chance for some treats this summer.

I got a wig from Simply Wigs online but only worn it 3 times shopping last year. Otherwise I'm too challenged to keep a scarf on properly and use beanies. I do put scarves round my neck though which gets quite draughty.

So not a pirate look - but I do have a blingy dark cap and dark glasses which, being rather pale, gives me an aging druggy rock chic look - which is partly true although these are not really drugs of choice.

I once brought a stuffed pigeon back from S Asia (terrible time at customs) as a present for then bf. He wasn't at all as pleased as I'd expected.

@TopOfTheCliff Yes - I think the accordion would be especially challenging.

@MrsPnut Oh lordy. Post partum parts. You have my deepest sympathy.

I'm feeling surprisingly OK this week so I've made a schedule and trying to really pack a lot in (e.g. am, chapter I agreed to while on steroids , lots of walking and even some cleaning). I've ordered a game to force dd to interact with me. Chemo 5 next Monday - feel like I'm trying to live a whole life in a week but we have to seize the minute day these days.

Loving all the pirate imagery, feel very cheered up by the madness.

@thereisonlyoneofme sending positive vibes but sorting out everything on your own can't be pleasant or easy. Lean on us, if you need anything. We're a good lot.

I'm in awe of the musical people here. I had years of flute lessons and was truly awful.

I had my staples out. As predicted my fast healing meant that the skin had started to grow over them. I did wear my new pants though. Fabric featured below. Apologies to anyone offended but they cheer me up.

@thereisonlyoneofme that sounds really hard. I live alone but I have my adult DD up the road from me and I see her most days but being by oneself through all of this must be dreadful. I too have OC. Hugs to you xxx

Top your boat sounds fabulous! I wish we all could come for a pirate trip on it together, swigging rum all day in our scarves

@MrsPnut your treatment sounds grim especially having a post partum undercarriage, no one needs that. One of the worst side effects of all this for me has been the horrendous pain of haemorrhoids which really in the big scheme of things are minor but having that constant burning and stinging has been awful.

@Acinonyx2 you've done well to do walking and cleaning. This is my 'good' week but I haven't achieved much. I have spent most of today chasing a Covid test ready for Wednesday's chemo - waiting for phone calls seems to be one of the features of all of this.

@seizethecuttlefish your pants are amazing! Pleased you've had your staples out. Hope you continue to heal fast and feel better soon.

My hair is shedding more with each passing day. I can see why people shave it off but still feel nervous of that. Last week when the nurse was peeling off my dressing from my drain she commented that it was like a wax. I said, 'I've never had one, I'm just old and hairy'. Now I'm thinking I soon won't have to worry about my bikini line - not that it is the highest on my list of priorities but every cloud...

@FizzyOrange I'm finding the weeks really unpredictable. This good week is much better than the last 'good' week (but why??) so I'm going for it as if I'll never be well again. Probably wouldn't be anything like as driven in a 'normal life week'. All the bad weeks have been bad in different ways - e.g. joint pain/nausea then neuropathy/shits. I change drugs next time - who knows...??

I seem to get very a bit manic in better weeks but hey, that's OK - except for the online purchasing that goes with it (today: 2 new beannies, a game, 3 books, blank coloured flashcards) having just agreed that we will stop spending post-xmas . I already have 6 beannies .

@seizethecuttlefish those pants need to be seen

Hope we hear from @InOtterNews

Hello.

@thereisonlyoneofme that sounds incredibly hard. Is there anyone you can lean on with making arrangements? Do you have friends who would be willing to step up and share some of the burden so you are not so alone? I would definitely not want one of my friends to go through all that alone. I know Covid makes it difficult but would a support bubble be possible?

@MrsPnut Very sorry to hear about your post partum-esque undercarriage. That sounds incredibly sore.

@seizethecuttlefish I have pants envy! Where are they from?

@FizzyOrange I have found that my leg hair is still going strong, but I am definitely thinning around the crotch. Where is the logic?! It seems so random. Of course my scarred armpit, which I cannot shave, is retaining its hair with determination. Typical!

@Acinonyx2 I am also a bit bemused about the patterns of exhaustion. I was told I would be manic during the days when I took steroids - that hasn't happened at all. I seem to have small bursts and then go back to exhaustion. But I can't yet identify a pattern.

@TopOfTheCliff Your boat sounds amazing! The closest I come to a parrot at home is a stuffed albatross named Albert, whom I inherited from a relative who was a Wren.

Thinking of you @InOtterNews and hoping everything is ok.

I have noticed that I have slipped into doom and gloom, which I guess is natural as I am hitting the lowest point of my chemo cycle. I am normally very close to my sister, but the current lockdown, the stress of homeschooling (for her and me) and everything else means we haven't caught up lately. I sort of feel that she may be avoiding me because she is stressed and doesn't want to pass that on to me. But I would love to talk to someone about something other than cancer - I don't want people to think they can't talk to me about other stuff. Does anyone else have this problem? I long for some normality!

Thank you for all the thoughts for my sore parts, I have a donut cushion arriving today which I am hoping will help when sitting downstairs.

@AlbertCampion I really love the conversations with my oldest friend for that, we chat about everything except cancer and I always feels so much better about myself afterwards.

@AlbertCampion A stuffed albatross - awesome!

In the early days it was so hard to think about anything else and I feel I may have over-shared - but now I like other topics for light relief, like - is the world going to hell in a hand basket due to virus-variants and/or the collapse of society. There's also the surreally absurd pleasure in sympathising with others' minor ailments.

@MrsPnut - I had half my vulva removed and skin grafted (2 years ago today - happy hemivulvectomy anniversary to me!).

I found a triangle wedge cushion really helped - I could lie on the sofa sitting up against it (if you see what I mean) so the pressure was more on my lower back than my vulva. Might be worth checking out if the donut doesn’t help.

Has there been any discussion about whether a catheter would help? I hate the bloody things, but if you were able to put up with one for a couple of weeks it might help the healing process (less stinging and wiping!)

Morning lovelies

Day 4 post chemo and I start to feel a tad less nauseous. Stopped the steroids for now as constipation is dreadful. Took some more Lactulose earlier which takes another 3 days to kick in. The girls keep telling me to take my braids out which I will on Thursday when I wash my hair the night before chemo. Been watching on Ticktok where they finally shave their hair off. I know I can do it. Gave DS a buzz cut yesterday because I can't blend hair so I said start short and build it up and that him and me will have matching cuts soon.

Thinking of you @InOtterNews

@MrsPnut I initially read that as your sons parts. I do hope you find relief.

@seizethecuttlefish loving the pants, go girl.

@Acinonyx2 my wig that was free is a £1300 half human hair one but I think I'd rather rock the pirate look and be a rebel.

@TopOfTheCliff when I was little we had a little cabin cruiser called Saucy Susy after my mum and we holidayed happily many times a year until my brother outgrew it. Enjoy. We booked 2 weeks in the caravan for Peterborough while we were there in August for this August. Not sure if it will clash with either my op or radiotherapy.

@thereisonlyoneofme echo the others, keep talking to us on here. Can't imagine doing this alone. Stay strong.

Hi too to @AlbertCampion @FizzyOrange @seizethecuttlefish @Thymeout @BitOfFun @backformore @Bloodybridget @ and everyone else.

Off to type some more of my course work up before another round of food.

This is a quick one as I'm feeling rough after chemo yesterday - I can't remember if anyone here has had the Pfizer vaccine while having chemo? I was reading another thread where people were reporting quite bad side effects, albeit only for a day or two. My oncologist said I should get it as soon as offered, but within a few days of the next treatment so I'm in better shape, but given my last two have been delayed because of v low neutrophils, and low hb this time, I'm not sure that's reliable, and I'm not keen to add more side effects to what I'm getting already. Of course I might not have any from the vaccine. Any thoughts/advice?

Sorry I don't feel up to catching up properly now, but I do send love and good wishes to all.

@Toofaroutallmylife I am ok unless I spend more than a few minutes sitting down, last night I sat downstairs trying to sit on my coccyx for 90 minutes and it was sore again after that.
Things are better this morning after laying down again.
I’m hoping the donut cushion will remove the pressure and let me join the family more.

I really don’t envy your surgery, it is hard enough coping for what I hope is the short term.

@Bloodybridget sorry to hear you are not feeling good. I feel for you. Not sure about the Covid jab but I seem to think some of my meds don't allow live jabs which will be what flu and Covid jams are methinks so I'm not having it at present.

Hi all just a quick question, if you are assigned a macmillan nurse at the hospital do they have access to your medical records?

@Bloodybridget I have been told not to have the Pfizer jab because of the allergic reaction I had to chemo and DD1 had the OxfordAZ jab on Saturday at work and has been very ill since. She has had flu type symptoms and been hot/cold, being sick, aches etc.

I don’t think I am going to have the vaccine if offered because I can’t face the side effects.

@HumphreysCorner Pfizer and Oxford are not live vaccines which is why we'll be offered them.

@MrsPnut I was also allergic to one of my drugs, pertuzumab - which drug were you allergic too? (Pertuzumab is an immunotherapy so could be relevant - compared to a classic chemotherapeutic agent, which would be less so.)

I'm also wary of side effects - so many of those already!

@Acinonyx2 I just assumed they would be like flu jabs. May have to reconsider but don't want to feel any worse than I do and FIL had a bad reaction although mum and dad didn't.

@user109651

Hi all just a quick question, if you are assigned a macmillan nurse at the hospital do they have access to your medical records?

I can't swear to it, but I imagine that they only have information relevant to your treatment now- they wouldn't be allowed to rummage back years and swot up on your 2012 abortion/ heroin addiction/ haemorrhoids/ whatever (nor would they have the time!) .

What is it that's bothering you?

@Acinonyx2 I was on Cisplatin this time but didn’t have the reaction until after I’d had it so it could have been one of the other meds.
Cisplatin is given in 1L of saline as well so not even on it’s own.

@user109651 I don’t have a Macmillan nurse but when I was having my original tests done, I think the one in the gynae department could see my test results for that department but not the breast clinic. My GP could see all the test results though because he told me some of them when we were discussing something else.

@MrsPnut Just looking at the advice and it's saying no vaccine for history of any serious allergic reaction to medication. That wouldn't normally be the case but I suppose with so many vaccines being given it's simpler than being more specific and knowing severe reactions will be all over the news. Be interesting to see what they tell me - now word yet though.

@BitOfFun
Oh no it doesn't bother me that they have access to my medical records, I just didn't know if they would. Im glad they do have access to recent test results because trying to get my results from my GP practise is like trying to get blood out of a stone!

[quote TopOfTheCliff]@thereisonlyoneofme that sounds tough to do on your own. I imagine you are quite scared. When you say final arrangements do you mean arranging your own funeral? That is grim! Respect to you for your clear thinking and courage.
I have booked up just one thing for 2021 so far which is a trip out on a Brixham sailing trawler in July. Where about are you?If you are near me perhaps I could take you out sailing in my new boat? That will be the one with the pirate captain She is in a marina waiting for me to get strong enough to take her out. And lockdown to go away obvs.
@Thymeout my grandfather had an electronic parrot that repeated everything you said. I think I am descended from Grace O’Malley.[/quote]
Yes I do mean funeral and rehoming dog. Yes Im bloody terrified night and morning and a lot in between as there is nothing to take my mind of things. Havent seen my friends for nearly a year, as they are old birds like me and have their own health problems, so we try to cheer each other up when on phone chats. Trouble is we are all putting a brave face on things to each other !

@Bloodybridget I saw my oncologist on Saturday and he advised I should get the vaccine (Pfizer) as it has been offered to me due to my job.

I had my last chemo session 4 weeks ago and over here the vaccine is not usually given to those on chemo &/or steroids unless you have a letter from your Dr. I’m in the system and just waiting for an appointment (but could be a few weeks) though the govt here is trying to get 50% of the population vaccinated by the end of March!

I did have the flu vaccine (on a chemo day) - but understand it’s not live and is a slightly different type of vaccine to the Pfizer one.

It’s very fair and not really visible but my hair has started growing again (though eyelashes have fallen out this week to balance things up!)!

@InOtterNews I really do hope you are recovering and can accept these virtual flowers 💐

Re the medical records access, did they ever roll out the mega data base so all medical personnel could see your records. I opted out but when I worked for the NHS seem to remember lots of problem with the
data base when first mooted (like all Government etc data bases!)

Hello to everyone.

I came on because I saw the post about the Covid vaccs. I had the Pfizer one when I was halfway through my last round of chemo, and had no problems at all. Next one in roughly 9 weeks, I guess.......

And no, the great all encompassing medical records never happened, so Macmillan nurses will not be able to see GP records (but can access results much more easily) and GP cannot see hospital notes, but can access some results. Where I live / work, it's a right faff on to see results from hospitals which aren't in our immediate area, which might be the problem yours have @user109651. Also, there's a kind of unspoken rule in medicine that the person who orders the test, should be the one giving the results (because they know why they ordered it / what they're looking for / what the next action will be), so GPs can be reluctant to hand out hospital results (we can also get told off for it!).

Sorry to hear that chemo is hard-going for many of you. I am now 2 weeks off any meds and feeling well, although my feet are a cracked and very sore mess, and my fingers have now started to crack too (how can this be, without chemo???). It has rather put paid to my plans for lots of exercise (and dragging the kids out for walks, so I think they are secretly rather pleased about my feet ...... should hunt out any foot voodoo dolls!).

And so sorry @thereisonlyoneofme that you're having to sort everything yourself. One of those times when I have to remind myself that we're not all neighbours (in some bloody unlucky street) and I can't offer to come and help out.
Love also to @BitOfFun. I think you are very stoical about everything, please do moan / share when you need to. And reading about your sore undercarriage made me wince @MrsPnut, memories of those postpartum days, so I do hope it starts healing soon.

Love all the thoughts of you brave pirate women!

@thereisonlyoneofme I wasn't sure if that was you meant - blimey - that is tough. I hesitate in case I say the wrong thing but I'll bet that's exactly the problem irl. So here are my thoughts.

I feel there are 2 approaches. 1 - just get it organised minimally and out of the way so you can just put your mind at rest that it's done. (I'm thinking about sorting my personal papers out and I'll feel better when I know it's just organised and done - it's such a mountain though...)

2 - make a proper project of it and really get stuck in (as your energy and health allow). You may find, put as a positive project some friends may be able to help. I've read about people who have done this.

Have you seen this - about rehoming pets in this situation?
www.mariecurie.org.uk/help/support/terminal-illness/planning-ahead/rehoming-pets

and also
www.mariecurie.org.uk/help/support/terminal-illness/planning-ahead/planning-your-own-funeral

You've probably thought through all these already but just wanted to put some thoughts out there.

Let's hope it's a long way off actually needing these arrangements but whether that's the case or not - I would also feel reassured to get them sorted.