Cancer support thread #82

[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

[MrsPnut]

A new thread but I am still here, still waiting for my plastics appointment and until that happens radiotherapy is delayed.

[Silkierabbit]

Thanks for starting a new thread MrsPNut and well done for noticing old thread was full. Hope you get an appointment soon.

[balkanscot]

Thank you for staring afresh, @MrsPnut.

I have tested Covid positive this morning, so feeling deflated. I now realise that pain in my very lower back & down my legs could be Covid related. I felt like I was getting a cold 2 days ago but the LFT kept saying I was negative. The only one I feel sorry for is DS9 who is meant to have come out of self isolation today - I even booked tickets for us to go to some fancy soft play. Obviously jinxed it as soon as I pressed “pay” button. DH can come out of self isolation on Tuesday at the earliest. If he keeps testing positive, then Thursday.

Apart from muscle pain coffee tastes vile and a few days ago I thought water tasted vile, too (bitter). No fever, no cough.

[MrsPnut]

@balkanscot That is just absolutely rubbish and what bad luck for DS. Maybe the soft play place will allow you to move your booking?

Hopefully DH will test negative and can come out of self isolation on Tuesday. Is it half term for you?

I have fortified myself with a sausage and egg roll and numerous cups of coffee before we set off cross country for DD2 to play rugby this afternoon. DH is staying at home and doing some ironing/ changing the bedding etc.

I just need to make a flask and make sure DD has her shirt and tie for post match food then we can pack the car.
Hope everyone is managing to stay warm and dry.

[balkanscot]

@MrsPnut mmmm… sausage & egg roll… Must make sure I have one once this coronashit is over. With my taste buds at the moment it would be utterly wasted on me. I hope you & your DD manage to dry off and keep warm after the match. Are the pugs helping your DH with tidying up? It’s utterly vile over here, non stop icy rain and leaden sky. Actually it matches up with my mood perfectly.

I have a freezer full of delicious locally made ice cream which I now cannot eat - well, I could but I would like to enjoy it at the same time as eating it, so will have to wait until I can taste it. Funnily enough, my taste buds are very similar to how they were during chemo - awful metallic taste. Gives me a few rotten flashbacks.

I have ordered some really lovely chocolates for Valentine’s Day tomorrow which will probably be completely lost on me taste-wise, so will have to let my DH scoff the lot. (yes, envy)

Half term indeed from tomorrow. Took annual leave to do stuff with DS but will now be spent getting over Covid. February is now officially a write off in this household. Or in other words, Covid is a February gift that just keeps on giving- starting from 4.2.

[Podgedodge]

@balkanscot oh, you’ve just made me worried, I have small of back pain and leg pain today and yesterday. Have just had a nose bleed so need to wait a wee bit before doing covid test.
Have builders coming tomorrow, and round 4 of chemo on Wed so really really hope it’s not, tho if it is will just have to cope as we all do!
Also covid would really put paid to what little taste buds chemo has left!
Why am I not losing any weight?🙂

[MrsPnut]

@balkanscot, The pugs probably snored their way through the afternoon.
We are home and warmed up thankfully, DD’s team won 44-0 and she scored a try so a good day all round topped off with a trip to KFC on the way home.

I hated losing my sense of taste so much, we went to a lovely bistro last August for our friend’s birthday and I have said to them that we need to go back there so I can actually taste the food.

I’m keeping my fingers crossed for you @Podgedodge let it just be coincidence.

[balkanscot]

@Podgedodge I am sure your muscle pains are a coincidence. Have you managed to do a test? I remember being shit scared 14 months ago just before my surgery, was so scared of me testing positive & medical staff absence for the same reason. I am keeping everything crossed for your chemo to resume again on Wednesday. 🤞Builders coming into the house is stressful at best of times. Think of an end product- your house will look better.

@MrsPnut well deserved treat! We ordered 5Guys tonight as DS loves them. I would have preferred Wagamama but it was to make up to DS for what will essentially be stuck for 14 days inside. A. Flat. With. No. Garden. Glad to hear the pugs have done their pet duty by snoozing the day away.

I must drink more but it’s difficult - water still tastes off, no juice in the house, maybe I’ll try milk. I did an online shop today and bought some ready mades - £90!!! And that’s without snacks - I forgot to order them!!!!

[TopOfTheCliff]

Hello new thread, hello everybody!
@balkanscot I’m so sorry you got the positive test and all it brings. I hope the time flies by and you stay well.

I’ve been over to see DM 88 in driving rain and wind to clear out her conservatory which had a freak pane of glass fall down and smash over everything. It’s her favourite place to entertain her mates so I hoovered and mopped and polished and it’s looking lovely. A good use of a crappy day! I’m so proud of her resilience she’s a great role model.
My lovely yoga class for breast cancer ladies had a spa day yesterday. I still don’t know them very well but we had a lovely time swimming and hot tubbing and sharing a buffet lunch. I was so relaxed afterwards I fell asleep for the afternoon. It was so nice to be amongst friends who have all been through cancer treatment in different ways. Everybody has a unique story and they are so kind. I really missed people during my Covid lockdown treatment.

Fingers crossed for @MissSmiley and all those awaiting surgery and get well soon @Silkierabbit and others recovering.
I will tell you all about my big adventure soon but I don’t really believe I will get away there is so much that could stop me!

Love to all and keep plodding along one foot in front of the other.
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[TwoBigNoisyBoys]

Hi everyone just wrote a long post on the other thread and was advised it had closed 🙈 so hunted out the new thread and have forgotten what I wrote on the other thread now…thanks chemo brain!

Sending love to you all as usual x

[MissSmiley]

Thanks for the new thread, I was hoping I would find you all before tomorrow, I'm in at 7am for the operation. I'll update when I can but it might be a few days before I can, if I post sooner it might be gibberish so apologies in advance.

I'll be thinking if you all on your own journeys this week

[thesandwich]

Just checking in and sending every good wish to you@MissSmiley

[Silkierabbit]

Hope it goes as well as it can tomorrow MissSmiley and let us know when you are up to it that you have come through operation. Gibberish or just a couple of words is fine, I just have random stuff going through my head at times with cancer especially after generals but would be good to know you have made it through ok in body at least, if later in mind.

I have a Valentine's Day first meeting with oncologist where will say if funding oncotype test or not and plan for chemo or not. by video as I am very anxious though no details through yet. Just asking on US site about it as they seem to be at the cutting edge on the research side and they say latest research is showing chemo is a benefit for pre menopausal women whatever oncotype score with any lymph nodes involved (unlike post menopausal with 1 to 3) but there is a school of thought this maybe due to not being in menopause rather than chemo but they cannot prove this either way atm so recommend chemo. But sounds like having ovaries out may be worth considering as well, think need that anyway. Non-stop fun this cancer lark.

Good luck to everyone else.

[Thymeout]

@balkanscot I've found Sainsbury's concentrated lime squash the best for forcing water down. Lots of experience with colonoscopies where you have to drink gallons beforehand, the very worst part of the procedure for me.

@MissSmiley All the best for tomorrow. Focusing on the thought of a gist that doesn't know what is about to hit it. Not long now till it's an ex-gist, gone to a better place, etc etc, like Monty Python's parrot .

[TwoBigNoisyBoys]

Good luck for today @MissSmiley xx

[MrsPnut]

@MissSmiley Good luck for today, hope it all goes well.

[Podgedodge]

Good luck for today @MissSmiley. Thinking of you.


PS covid test negative, one less thing to worry about this week.

[thereisonlyoneofme]

anyone developed a hernia after debulking surgery for Ovarian cancer ?
Ive found one and oncologist doesnt want to do anything about it but Im terrified of it strangulating or getting really huge.

[balkanscot]

@TopOfTheCliff I have a stinking headache/sinus-ache today. On top of the building works that are going on at the back of our building. Think angle grinders. Complements the headache perfectly. (not envy). I will look out for classes that are specifically aimed at people in the same boat. Because everywhere I look, at the local classes, all I see is the target audience that is not me - young, hip, work hard/play hard.

@MissSmiley I hope the op has gone well - keeping everything crossed.

I thought the silver Covid lining will be that I can save money by not frittering money away on yummy pastries, etc. (a new bakery has just opened in the neighbourhood and I just can’t stay away). Bought a new microwave instead. To be fair our current one is ancient and the white interior has started to crumble off. I also want a new proper pillow (current cheapie one is squashed beyond belief) and a pair of new running shoes (current ones are 5 years old and have started to give me backache every time I run). And my post-cancer mindset is, feck it, money is for spending.

[balkanscot]

And it seems I am in good company Covid-wise as both Charles & Camilla are positive as well. 👑

[Silkierabbit]

Had Valentines appointment with oncology and they have given me a present, NHS will pay for prosigna test Results back on 28th.

Said officially its a 6% benefit from chemo, 3% risks but they said means 94 women out of 100 don't benefit and as lobular extremely likely will be in 94. They did offer a faster regime of 12 weeks doxy every 3 weeks x 4 I think or 18 weeks (3 x EC then 3 x doxy) though I may have regimes wrong if that sounds wrong. The timings are right but need to check regimes as it was by video call and did not have pen and paper.

Will go and enjoy the fine Scottish weather later this week if car does not get blown off the road on way up , and try to forgot about it for a few days then covid booster week after. Results on 28th then should be some treatment a couple of weeks later either chemo or radio to chest wall then tamoxifen plus monthly injections, it either 2 or all 3.

Hope your operation went well MissSmiley and sorry you have covid Balkan. Hoping to avoid it on my Scottish trip but not too confident on a very wet and windy trip with a pool staying in hotels but fed up of staying in and want to swim.

[TopOfTheCliff]

Ah @balkanscot that is so cruel that the angle grinders have arrived at the same time as the Royal virus. Earplugs? Noise cancelling headphones? Sending sympathy.

I have developed a dangerous mindset that asks “If your cancer comes back in five years would you regret not doing/buying/saying XYZ?”
It is letting me splash the cash on all sorts of expensive treats. I guess once I’ve had a little spending spree and realise I’m still here I will calm down. I’m enjoying it while feeling slightly guilty. So buy the pillow and buy the shoes!
Love to all x
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[stressedscot]

I hope you don't mind me posting on here but I needed to offload and this seems most appropriate place.
I've had swollen painful glands in armpit since Christmas but thought nothing of it till about 3 weeks ago when they spread to groin and other armpit. GP wasn't worried initially but took bloods which he said are reassuring and said see how it goes. Last week I felt absolutely awful and took a few days off work to sleep and spoke to gp who wanted to wait till today before anything else. I've since started waking up sweating and unable to get back to sleep , I've lost 10lb in a month which I've never managed when trying! GP has made an urgent referral to haematology today but quite frankly I'm bricking it and even he admitted this wasn't the update he wanted to hear. How do I get through the waiting? Im on holidays so too much time on my hands and to be honest even if I wasn't I feel rough, sometimes I get really awful pain and doubt I'd be in work even if open.
Can't find way to tell dh, his mum and brother have both had blood cancers and I just can't bring myself to tell anyone so sat in bath crying and wishing it was morning so I don't have to do another sleepless night and house would be empty again.

[SewingBees]

@balkanscot As my chemo progressed the only thing that tasted normal was milk. I got through gallons, and loads of milk based ice cream lollies that also soothed my sore mouth.

Those who've been through chemo and lost their hair when did it grow back? My pubic hair is growing back (sorry if TMI) but my head is as patchy as ever. I'm starting to worry I'll be in the 10% whose hair doesn't come back. Last chemo was on 16 December. I miss my hair, it was thick and curly and always one of my strongest features. The other one being my boobs which have remained despite their attempt to kill me....

[SewingBees]

@stressedscot I'm sorry that I can't be of any reassurance at this time, but I didn't want you to feel that you're alone. We've all been through worrying times, so we know how it feels, and I'm sorry that you find yourself here.