Cancer Support Thread #80 Newbies Welcome

[HumphreysCorner]

Welcome everyone old and new. Feel free to post a quick update to help new and old follow.

HC x

@Littlestelephant have you got decent painkillers? I was on paracetamol and ibuprofen for weeks with amitriptyline at night for nerve pain and occasionally codeine when it really hurt. It does get better and if like me you push too hard too soon you quickly learn not to! A hot wheat bag helps the pain a lot too.

@Bloodybridget I have been pondering the Norfolk question while scrubbing the decks. Worst case is that either you do nothing and miss a wonderful opportunity or you let your house out to someone who mistreats it while you languish in cold rainy Norfolk pining for the city unable to get home. Could you perhaps rent an Airbnb for a few weeks as a trial? No furniture needed and your home stays unsullied. If it is fabulous then you will know it is worth the risk of letting out your place.
My cousin and her husband are moving to their holiday home in Norfolk as he has stage 4 cancer and wants to spend his time there. It is a very seductive idea.

I am so happy here playing boats. I’m still tied up in the Marina but who cares?

Thanks for the info, and the advice re emed. I think I'll have to try and advocate for stronger meds for the next round, I can't face another episode of vomfest-3000.

I was surprised the gp came around too, he was a nice young lad but did insist on injecting me in the bum as I leant over the toilet. It was the least glamorous moment, I think for a while. Childbirth included!

Thanks very much to everyone who responded to my ponderings about homes and Norfolk. It's great that you're all encouraging me to give it a go - and renting an Airbn'b for a longish stay is a really good idea. I do love Suffolk too and we'd fixated on Woodbridge last year, but then I got the lung thing. And actually it would be much quicker and easier to get to my family from London than from SE Suffolk - but we could look at other areas of course. Ideally I'd be no more than 30 minutes drive from DB.

@TopOfTheCliff a 33' yacht sounds amazing! I love boats, have never sailed.

@Bloodybridget

Re being close to Bart's at the moment, would it be possible to continue to be treated by them? I know someone who's just moved 50 miles away from London. She has Parkinson's and will still be a patient at the Neurological specialist hospital in London. People come from all over the UK to be treated there.

With a rare tumour and the increasing use of zoom consultations, they might agree to keep you on? Especially as your chemo is now oral, not by infusion. You could have bloods etc done locally. Or, as I'm sure you know, there's a v fast service by train from Norwich to London now.

I'm with the carpe diem crowd. Always thought it was a pity that TQ didn't get her Cornish holiday with her dds.

@Thymeout yes I think it's quite possible I could continue being treated at Barts. You're so right about TQ.

@AlbertCampion I'm not sure about recurrence and having the genetic links but I can ask some of those questions when I have my next oncology appointment and certainly when I go get my tests done if I get there before you. Just let me know what you'd like to ask x

Also thanks everyone who has sent EC recovery love and advice on my new regimen. All appreciated thank you

@Littlestelephant @backformore I'm 5.5 weeks post complete clearance. Arm mobility for the first 2 weeks was very poor and I really wondered if I'd ever be able to get my arm up for radiotherapy. But mobility has improved a lot - certainly enough for that. I suspect it will never be 100% though and I do have a bunch of weird sensations. Numb in the arm pit and part of upper arm. A weird feeling as if bruised/burned on the back of the upper arm and like something is stuck under my arm. It's manageable though - I'm actually relieved it's not worse.

@TopOfTheCliff I like to think of you on your boat Hope your dd recovers soon.

@Bloodybridget we have been thinking for a while of moving to the Norfolk coast when dd goes to uni. The thing that makes me hesitate most is changing hospitals and I'd want to investigate which hospital I would be using before committing to a new place. I'm also torn about leaving local friends as at some point, there will be one of us living alone in the new place (but you have family there).

It's still up in the air and we're a few years behind you - so probably looking at 3-6 years time. OTOH I can't see us living here indefinitely once dd has moved on but I'm unusually anxious about moving. We'd probably try it out first as you are thinking about - but I've got the same issues about renting out our over-stuffed house.

So I do think you should try it - and perhaps include some winter-time to get the full cold, bleak fens experience.

Allergy is just gradually settling - but (possibly TMI) I still have some seeping so still a way to go yet. I'm certainly getting a lot more medical attention as this is not business as usual - but no-one can actually do anything.

As for EC and chemo generally - forget who all is commenting - don't want to alarm new pps as some people have an easier time with it but frankly I regularly lost the will to live on chemo it was just so tough and I got mentally distressed independently of being physically unwell, i.e. I think both were chemically induced. That's something to be look out for.

It does pass though (even if you have to do it again ...). You get good days and for most people the tough kind of chemo is time limited. It's very hard to hang on to that some times when you're in it - but the relief and appreciation for feeling better when it is done is great. I'm enjoying the enforced treatment break as long as it doesn't go too long.

@Acinonyx2 "Numb in the arm pit and part of upper arm. A weird feeling as if bruised/burned on the back of the upper arm and like something is stuck under my arm." - Yes, this is it exactly! Numb armpit and raw/burning sensation along back of upper arm. And the sticky feeling. Would be interested to hear how it improves, if that's 5.5 weeks after an AX (I only had sentinel node - ten days ago now - and wasn't expecting all of the associated discomfort)...

@Littlestelephant, it sounds as if we're at a similar stage re surgery. Hope you start feeling better soon! Are you still waiting for a pathology report, too?

@Acinonyx2 that's interesting that you have a similar issue to me about moving to Norfolk! I hope when the time comes you feel clearer about what you want and more confident that it will work out. You're so right that we need to experience the dreary wastes of winter there.

We're kicking around various ideas including not actually moving, but spending frequent long-ish spells there in holiday cottages/Airbnbs/any cheap or free accommodation we can blag. Of course that means we wouldn't have a life there, would always just be visitors.

I am sorry your arm is still in a nasty state. I noticed when I was on chemo that any injury took far longer to heal.

Thanks for the info on the arm stuff. It is good to know it should start improving and I will be able to move it for Radiotherapy. Patience isn't my strongest skill. It also feels sometimes numb and sometimes burny so will see what happens with those feelings.

@backformore yes I'm also waiting for my Pathology results. I get them on the 10th June. I flip between not even thinking about the results to sudden panic and worst case scenario planning. When do you get your results? How are you feeling about it all?

@Acinonyx2 that’s an interesting observation about your bleak moods being chemically induced. Having bipolar DD on my mind I can see her illness is a very chemical one that is related to excessive stress and her brain just overheats and she gets manic and psychotic. I’m glad to say she made some very good choices and is already on the mend. Her DP hasn’t seen her like this before so we are hoping he will cope. She is the dearest girl!

My bleak days in chemo were related to getting a migraine from dehydration in the midst of rounds 2 and 5. I felt so physically unwell I wanted to give up but hour by hour day by day it passed and every round was different with other challenges. Looking back now on the five months of hell it was worth it and I would do it again if I had to. But even the superresilient Tiggerish @TopOfTheCliff has a breaking point and I reached it twice. I am so grateful now for feeling well and almost normal . I appreciate life in a way I didn’t before.

I was born in Norfolk. My DF was working at the old hospital in Norwich. I haven’t spent much time there but it has a similar vibe to the SouthWest where I live. You need to be happy away from theatres concerts posh dining and shops, which suits me fine as I am a peasant at heart. I get headaches whenever I go to London. I am a country bumpkin!
Enjoy the BH folks
TopoftheMast

Hello, I originally joined thread #75 last year but have been MIA for the last few and am so sorry to see so many new names.

As a new intro and update, I found a lump in my left breast last summer - though tests found there were two little beggars in there plus one in a lymph node. Also found out family history re BRCA2 - turns out all my cousins tested and had the full Angelina if positive but my ‘M’ withheld this information (but that’s for another thread!). My BC is triple positive and I have a BRCA2 mutation, so I do know why me - though even before the results were in I tried to think hey why not me!

In July last year I had a double mastectomy and clearance of 17 lymph nodes (only the one positive but though ‘teeny tiny’ according to the the Devine Dr M, it was ‘extracapsular’). As a result I had 4 rounds of AC chemo followed by 12 weeks of taxol with herceptin and pertuzumab every three weeks. Finished chemo at the end of Dec 2020 - bald, aching, 15ks lighter, breathless, grey, lacking iron and almost the will to live etc. Apparently though Dr M was very pleased at how well I withstood the chemo!!!! Never really had any medical treatment - but at 59 I went in big!

I had RT (25 session) - this ended 30 March! No ill effects - though ironically did acquire a pulmonary embolism and pleurisy - fortunately both minor. Dr M was more shook up than me and postponed that weeks H&P and RT oncologist gave me two days off!! The RT onc has told me I am now cancer free. The Devine Dr M has said there is no clinical evidence of a recurrence! Though got told now have signs of osteoporosis in my spine but have been given Prolia and recommended every 6 months. Am also on daily aramadex and osteocare tablets for the next 5 years.

Port out last week so can start the journey home to London! Leaving ME this Friday (2 weeks R&R in Greece first then isolate at home for 10 days!). I haven’t told any family and friends back home (except my DA) about my diagnosis. I have a few very good friends here who have been wonderful (as has been my employer) - but time to face the music and hopefully dance!

I am now on

Ooh sorry that was long! Was just going to add I did wonder if I could not mention the C word to anyone but the DCs and my DB need to consider genetic tests. I do feel ok now (especially as my very short cropped pixie has been dyed blonde!) and I know from comments on here how some are unable to cope with reference to the big C!

Also although have just been lurking most of this year thank you all of you for posting on this thread, as has been a great support and comfort to me especially being so far from home!

If I can ever return the favour would be happy to anytime x

@ElaineMarieBenes good to hear you have come through the cancel tunnel and out the other side.

I have no inhibitions at all talking about cancer but irl try to be sensitive to other people's experiences and responses. I am, however, extremely cagey wrt to my mental health issues - so I know what it's like to not want to expose something.

@TopOfTheCliff My diagnoses have been slippery and include bipolar 2 but the mania is quite mild although I definitely have mood swings which can become ultra-rapid. There has been an irritating tendency for drs to see affective disorders as either endogenous or reactive which is absurd as clearly a trigger is a trigger for either case.

I did explain my issues to dh when we first got together - but it doesn't really sink in for dps until they experience it - and best they do really, earlier rather than later since it's inevitable at some point.

I would like to think, if I were an oncologist, that if I had a patient with a documented history of mental health issues I might anticipate that this might be aggravated my e.g. chemotherapy. I did mention it at my first meeting with no response. Then I had nasty steroid withdrawals (which could happen with or with out an MH history) and they were slow to deal with it - they are just not geared up for that side of things and I think don't realise the full severity of the possible mental side (or sometimes the physical side come to that). Everyone is just focussed on getting through treatment and looking for fevers or failed blood tests.

I've watched dd hoping she hasn't inherited this from me but she has quite different issues (there's always something ) but otherwise dh's unnaturally even temperament.

I was such a Big City girl until my late 30s - I lived in 4 capital cities - but now live in a village, and would like to be even more rural, craving green space and bigger garden. I fantasize about having an animal sanctuary.

@Littlestelephant June 10 for me, too! How funny. Though radiation department has booked me in for a consult on June 9, so I’m hoping to hear back sooner.

I go back and forth between feeling that the worst has to be over (chemo and surgery with the most fiddly stuff - wires and dyes - in pre-op, which weirdly is the stuff that stresses me out the most) and a deep, dark, tired feeling that they’re going to find enough worrisome cells that I’ll have to go back for a mastectomy. At the beginning of all this, back in December, I’d wanted them to just pop off both boobs and be done with it... but now having been through chemo and knowing that (for someone with my diagnosis) lumpectomy a d radiation is actually just as effective, and that prophylactic mastectomy isn’t necessarily the perfect solution against recurrence anyway, I’ve kind of wimped out against the idea and just want to be done with all of this hard stuff! My body has been battered enough already and I so want it to start healing now.

Because I’d had cancer in a couple of lymphs before chemo, my first surgeon wanted to do a full scorched earth clearance (AX), but my second opinion surgeon advised against because the risks seems to outweigh the chances of there still being cancer there; she advised a smaller surgery first. My tumour has shrunk to almost nothing but second surgeon was a bit wary of the calcification in my breast and so took a sample slice of that, too, for testing. Because I’m small of boob, if there are cells floating about elsewhere the best course would be mastectomy. Chances of this she put at around 20% so I’m hoping that I’ll actually be lucky for the first time since December! How are you coping?

Hello all! Sorry it has taken me so long to respond to everyone. I just can’t seem to concentrate on anything right now..

I am married to an American so live in the US. My care is coordinated through the same hospital but it appears to be little communication between providers :(. I am seeing my lovely dermatologist tomorrow. I’m going to dump everything in her lap. She is very feisty so I am hoping she can push things along..

I am reading all the comments here and feeling very grateful for the support ❤️❤️❤️❤️

Hi all I’m pretty late to this new thread but thought I’d chip in with my bio. I only started lurking on the last thread after a diagnosis in April and I feel slightly guilty that I’ve only really posted so far with questions but it’s early days I suppose - maybe one day I’ll be one of the wise ones who can help and support the newbies! I’m 49 with a DH and 2 DC, 18 and 14. I have ductal BC that is both invasive and in situ (not sure how that works but that’s what’s been written in my notes) plus another lesion found slightly after the first one. Both are triple negative and I’ve been referred for genetic testing.

My first stage of treatment is 3 cycles of EC with 3 week gaps then a switch to weekly for carboplatin/paclitaxil (one of them each week for 12 weeks, the other every 4th week I believe). I had the first EC 11 days ago now and feel very lucky with how I’ve found it so far - I would say minimal side effects really. Slight nausea for the first evening and then just a feeling of not being quite my usual self and tired/weak for a few days. For the past several days I’ve felt amazing, like I’m buzzing from the fact that I feel normal rather than ill, like I was expecting. For me the worst part so far has been the run up to diagnosis and then the period after diagnosis when I was having further tests before I had a treatment plan. Since I’ve had a plan, and particularly once treatment actually started, I’ve felt increasingly calm and positive. I know this probably won’t be a permanent state of mind but for now I’m making the most of it and enjoying myself as much as I can.

I’ve chosen to go private for my chemo but currently still under the NHS breast surgeon so at some point I need to decide whether to fully switch. I’ve had a port fitted and I’m using a cold cap to see whether I can keep some hair, which were the two main reasons I decided to go private.

Having been reading other posts, I feel the need to mention Norfolk! I’ve only ever been the once when DS1 was a baby and we had a lovely few days on the beach and wandering around some very pretty villages. In fact I’ve just done a photo book for DS1’s 18th birthday and there’s a photo in there taken on that very trip.

@ElaineMarieBenes it's lovely to hear from you, I'm really glad you are deemed to be cancer free now, and wish you a long and healthy life henceforth! Hope you have a great time in Greece, happy landings in the UK!
@backformore wishing you very good luck with results - also to @Littlestelephant.
@MadamBuxton that's great that you're not having too bad a time with treatment atm, and that you're feeling calm and positive.
Sending love and light (whatever that means, it sounds a bit woo for me but take it as beneficial!!) to everyone here.
I just saw that there's a Woolly Hugs thread for BitOfFun.

My small news is that I have now had four doses of niraparib (daily oral chemo) and haven't had any ill-effects at all yet - I was gloomily expecting to feel dreadful immediately, so the lovely BH weekend has been very enjoyable, and I've been almost unnaturally cheerful and chatty. Long may this happy state of affairs continue!

@Bloodybridget I definitely would try out a different lifestyle. Dsis works in a major cancer hospital and treats people from all over the Uk. The continue treatment for patients when they move although sometimes scans etc are performed locally and then sent to them.

@TopOfTheCliff - very envious that you are by the sea. Livening by the sea is on my wish list. Glorious weather this weekend too. Glad to hear your DD is on the mend.

@Littlestelephant- hope your pain has eased and the heat is not making you too uncomfortable

@NogbagTheBag - hope you started feeling better and enjoyed your few days away

@thereisonlyoneofme - I hope you have been out enjoying your new car!

Waving to everyone else and wishing you all well.

Did anyone have lumpiness under their arm after the Sentinel Node Biopsy? I'm about 8 days in and can finally lift my arm high enough to see the lumpiness.

@backformore I am also small of boob with similar odds of needing more surgery. I thought I would be OK with it but I really need it to be done now. I will be thinking of you on the 10th. And have everything crossed that both of our results will come back good.

@Littlestelephant I do have some swelling at the incision site under my arm - looks like a single lump (I had to compare with my other side to figure out if that was the normal shape or not, but it’s definitely swollen). I think this is to be expected, unless it grows or turns red or starts oozing or getting irritated. Or by lumpiness do you mean bumpy all over?

Now here is a weedy question - did the tatoos for radiotherapy hurt??

@Acinonyx2 it’s nothing to worry about. They prick you with a needle and rub ink into the hole so it’s a tiny dot smaller than a pin head. It doesn’t hurt, especially on the operation side which is numb. I had three dots in all.
Top (back ashore in Mum minding mode)

Hi all, hope you don't mind if I join you. I have OC 3b diagnosed in aug 2020 and have had the big op and 6 rounds of carbo/taxol. End of chemo scan in april was clear so all good... except I had a tender patch/ lump on my abdomen before the ct that I figured was a hernia as nothing showed up on the ct. Gp referred me for an ultrasound which I had last week and rang tonight to say that its a nodule and likely cancerous and she's told the oncologist. So I'm back on the rollercoaster of emotions and finding it hard to cope and just wanted to share with people who would get what I meant. I only finished chemo in March and was getting back to some sort of life and now feel like the rug has been pulled again. Has anyone used Maggies centres for someone to talk to? Dh is not good with emotion 😕