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

@Beanie567

Oh poor you! Talk about bad timing. I think there are a couple of melanoma patients on here. All I know is new drugs have revolutionised treatment.

Good news story in my wider family: distant nephew, 40 ish, mole on calf, had spread to lymph nodes higher up. Two ops. Skin graft ? All clear now for last 4 years. Has lymphodema in leg. Wears elastic stocking. Runs marathons for Macmillan. Has regular checkups, full body scans every year. Otherwise, life goes on. No different from any other husband, dad of three.

Best wishes for the wedding. How are the rest of the family taking it, or are you keeping it quiet for now?

Thanks Mowly Silkiecat died in the night but at least she isn't suffering anymore and she was almost 18. I have sorted the cremation arrangements and kids told. DD still in France.

Having trouble with ESA and had to spend half the day sorting that out but now had the initial interview. Next work one not until 9 June and only have to do the 28 page form and 1 more interview before that. And EHIC were arguing I did not live in UK even though lots of proof, argh, but a poll card sorted that as they refused to accept my bank statement. A bit further forward at least.

Neuropathy much better off the chemo but so, so tired. Need my steriods.

Looking forward to 3 nights away, just got to pack and make sure house is clean before we leave. DH is incharge of that but I have ordered a one-off clean for 30th as too tired myself and DH would not know clean. Though one pet less helps with that. More hair going.

@Silkierabbit, I am so sorry about silkiecat, they are so much part of our lives aren’t they.

I feel a bit guilty saying this,in light of what others are going through, but it is my last chemo session tomorrow! I am so pleased that this stage of my treatment will be over, it has been a hard slog, and I hate that I have lost my hair, but am so happy tomorrow will be an end to it.
( I realise I may be being optimistic as I still have another op to go and other things might be discovered, but I am going to assume that this is it)
Even another cycles worth of side effects will be worth it, cos I will keep telling myself it’s the last time.

@Beanie567 that sounds massively frustrating. My grandfather passed of stage IV melanoma, but that was 35 years ago and treatments have improved quite a bit. But - hold on to hope that it hasn't spread extensively; no need to borrow tomorrows woes today!

Speaking of melanoma - public service announcement that BRCA carriers have a slight statistical likelihood to also develop a primary skin cancer, so keep an eye on things!

Thanks Podge and great to hear you just have one chemo to go. and the end is near.

@Silkierabbit so sorry to hear about silkiecat 😭

@Silkierabbit I’m so sorry to hear about your cat…sending you lots of love.

@Podgedodge good luck for tomorrow!

Xxx

@Silkierabbit Are you on Paclitaxel?? Is that what has caused your neuropathy? Or is anyone else? No-one knows anything about my fucking blood disease but because it has put me so far behind in my treatment & I have been advocating every day to TREAT MY CANCER NOW my oncologist wants to switch me from planned immunotherapy regime (Letrazole & Pablociclib) to this. She would have to put me on reduced dose of pabociclib & "reduced dose" doesn't sound great when you have stage 4 cancer. It was all done in a massive rush this afternoon in a phone call when I had to decide then and there and I was hysterically crying. Then I had to rush to the hospital right then and have a blood test to see if I even can have any treatment. I'm now running a temp and have sore throat and my glands hurt and I hope to god it's just the rollercoaster of stress from today. But DP & DD seem like they have colds .

I know the side effects of Paclitaxel could be really, really bad and I am dreading it. I've still got PTSD from chemo ten years ago, plus A&E last week as I had so many cannulas and blood draws my veins are all shit and have collapsed so I bet a PICC line is on the cards.

I am mostly very scared chemo will jettison the last shred of the tiny bit of quality of life I do have. At least now even though I am bed-bound I can write on the laptop, I can read to DD, I can shuffle around a bit and make DD birthday cards for the future etc.

HOWEVER I did agree to the chemo; if my blood count will even be high enough to let me have it. And I'm not coming down with an infection/cold. Oncologist clearly thinks this is what I should have although she wouldn't say outright. It seems like a good idea to get treatment in me ASAP and I will have to be really brave for 12 weeks and take it. After 12 weeks they will scan me & possibly I can move back to the original immunotherapy. But I am very, very scared. Wow I wish I could write something more positive on this thread for once but um ... let me see ... got a grant from a cancer charity & bought some lovely new bedding which I'm enjoying now. Ok. There you go. Love and light and good wishes to all the lovely ladies on this thread.

ohhh @Silkierabbit I've just read the new messages on the thread. So so sorry about your cat. But yes, no more pain for puss cat ... and yeah less hair. Both my cats are black and the fur! Oh the fur! RIP Silkiecat.

@Silkierabbit I'm really sorry to hear about your cat, sending love Xx

@Silkierabbit I am so sorry about you cat🌺🌺 hope yo7 can enjoy your break.
@mowly77 I know I’m probably on a different regime but I had 3x3 EC And now weekly 5 of 9 paclitaxel for bc. I’ve found paclitaxel easier than EC, just fatigue. Drinking water like a fish seems to help and anti sickness meds must be working. Hope you are fit enough for it, and hope it is the same for you.
Hugs to all .

Thanks everyone for the kind messages re Silkiecat.

Mowly Yes I am on weekly Pax for 12 weeks. I was given a choice of 4 chemo regimes over 3 months and I researched them and Pax was best for least long term side effects, the only real long term risk with it is neuropathy and obviously there is hair loss if you can't cold cap. I am not allowed to cold cap. For me the first two days I am like a zombie from the piriton but then have more energy on steroids for a couple of days in which its possible to get things done. I can use a laptop everyday though do fall asleep at random times on days after steroids and sleep most of chemo day and day after then insomnia on steroid days. Overall its a normal amount of sleep but little control over when. The tiredness is also supposed to build each cycle, not noticed that so far and the weeks break is reversing that. I could certainly make birthday cards on any of the days. Shuffling round a bit, I am generally in bed all day everyday but can do 20 mins exercise from bed some of the days like steroid days so could probably do that. I would feel able to read to a child some of the time, maybe not every night but some of the nights. I think you will be able to do that on Pax, its kind of like having mild flu every day. With Pax you miss the extremes of the chemo 3 weeklies so you don't have the really bad week or the normal week, you have meh/bit rubbish everyday.

I have really bad neuropathy with it, about 80% of people get some neuropathy with it but I have it a lot worse than most people. Having it badly is linked to kidney issues and diabetes and my kidney result is dodgy and family kidney issues. But they do make adjustments for that. Like I have not been able to feel my feet properly for 2 weeks - half numb and pins and needles, legs were 2 days, gums 2 hours, eyes 3 days, hands on and off everyday. So I have a week off and now can feel them all. Taste is normal, they do give you anti-sickness meds which gave me quite a few issues but you can change or stop them and I am better with nothing. Well I take 2 a week including 1 they give you at chemo rather than 6 you are given to take. I never feel like death but equally am counting the days as I never feel normal. I am very glad to have this week off and to be able to feel all my body again. You are unlucky if you get permanent neuropathy but it happens, that's why its important to tell chemo line about anything like this.

You should try the charity SomethingtoLookForwardTo Mowly they have some cottage breaks and hotel breaks for free and they prioritise stage 4 and people with kids. They have given me the night in hotel, £40 for dinner and breakfast this Thursday for me, DH and DS was just £50 to add with his own room and breakfast and lovely hotel overlooking the river. They also gave me Lake Windermere Cruise tickets. You can get meals out as well, I am avoiding those due to covid but its a lovely charity.

So sorry @Silkierabbit about your cat. I love your plan for the housecleaning too.

@mowly77 it does seem paclitaxel is one of the more tolerable chemo drugs. You are due some good fortune after all the shit flying your way so maybe you will sail through it.

That brings me to my news. On Easter Sunday at 10am I shall be setting out to sail round Britain while my DH cycles along the coast. Each night we hope to reach the same port for supper and sleep. It will take us about ten weeks and we are hoping to reach Orkney and Shetland. I can’t post a link here but the blog is on FB on @BBBBBB2022 Brodies Big British Boat and Bicycle Bash. There will be Fundraising for a cancer support charity with green T shirts

After getting through chemotherapy and surgery with a broken ankle nothing will ever seem as hard again but if it gets lumpy and I am seasick I shall think of everybody on this thread and push on regardless.
I’ve tidied up my allotment and planted lots of potatoes and random things to keep the allotment police happy. Tomorrow I am doing a big shop for stores, ships biscuits and lots of wine gums and jelly babies to keep us going. I hope my house plants will survive without me, luckily we have no pets to worry about. When I get back it will be midsummer!
I very much hope I will have got used to my new wrecked aching and scarred body by then. Maybe I will come home a stone lighter, unless I eat all the ships biscuits! Anyway it will be a great adventure and I’m not at all sure how it is going to work out. There will be Wi-Fi in most places so I will report on progress.
Sending best wishes to all just starting down the path, those enduring treatment now, and those trying to put life back together again afterwards.
Top

@mowly77 - you may want to have a page through this pdf (scroll to the bottom and download it for free. Most recently updated in early March this year):

www.insidersguidembc.com/view-download-pdf

It covers all the various types of therapies, when best used, stats, locations of mets and hormone profiles etc etc etc. Its pretty exhaustive and the gal who puts it together has been stage IV for almost 15 years now.

While the situation with the CAD isn't ideal, or common, having an idea of the wide range of potential therapies and common treatment pathways is a good in order to best challenge your team where needed.

Thank you @HerbalRefreshment I will have a look

I've now tested positive for covid. Hahhhhhhhaaa aghhhhhhhhhhhh

@TopOfTheCliff wow - this sounds like a mega adventure, and just what the doctor ordered!

@TopOfTheCliff that sounds amazing. And you are amazing!
@mowly77 you just can’t catch a break just now, can you? Hope it’s a mild dose and doesn’t flatten you.

🙂 last chemo, tick 🙂

Woo! Last chemo @Podgedodge that's brilliant.
It is weird how when we should be filled with joy we just feel flat instead. I think it is because we are so used to suppressing terror and anxiety it is hard to release any emotion even if it is joy.

@mowly77 sending love and positive waves.
I had my 5th dose of vaccine today.

Thanks for the lovely messages and the donations. I don't need money to go and enjoy myself but its a great cause!

Top xx

Hi Twig, sorry you're here . I'm newish too, diagnosed with endometrial cancer last week. Told my surgery could be 4-6 weeks yet, which seems too long, but on the other hand what I have is low grade and slow growing. I feel reasonably calm about it now, but the first week or so I was all over the place. There's a lot to assimilate and I'm not great with uncertainty!

Morning everyone. It’s my last chemo today, it’s been a long 24 weeks!

Very mixed emotions…I know I’ll be poorly for 7-10 days after today, but I can put up with it knowing it’s the last one. I’m dreading having the picc line out…it’s been the bane of my life since November, and still painful now, so even though I can’t wait to be rid of it, the thought of them taking it out is making me queasy. And I’m feeling emotional about not seeing everyone again. I know that if I have a query, a nurse will know the answer, or my consultant will pop onto the day ward to see me. Not having that safety blanket is going to be weird! And of course I will miss the friends I’ve met. It feels like I’ve been having chemo forever. Can’t believe it’s at an end.

Aww Mowly so sorry you have covid, hope you aren't too ill with it.

Well done TwoNoisy on reaching the end of chemo and hope it goes OK today. And well done Podge

Thanks Top Your adventure sounds amazing.

Welcome Twig Sorry you have been diagnosed with breast cancer. I have breast cancer as well. Its such a shock at the start and a very anxious time but we will be here with you to go through your journey.

I have spent the last 2 days on the phone all day battling with ESA, I am sure they deliberately make it really stressful to claim. First day they had made my appointment in a job centre whilst I am doing chemo but after all day calls I managed to get it done over the phone and that was sorted but a stressful day. Then next morning I get a text saying they have rejected the GPs sick note, a perfectly normal sicknote which is correct, after 2 weeks which means they won't pay anything unless I can resolve it but no reason given. So another day of very stressful calls, 30 mins each one as they take 20 minutes to answer and you have to go through ID about 5 times on each call. I was just initially told no-one knew the problem and take the note to a jobcentre, one I don't want to due to chemo and 2 note is rejected so how does that help. Then upload it online, I have tried about 8 different versions repeatedly over about 2 days already and it rejects every one. Then a horrible guy who put phone down on me. Then tried again and a more helpful man who played guess the issue and he guessed it might be as the sick note was for 6 months and they have a 3 month rule which they don't mention. And he put in for the centre which processes them to try and resolve it and call me back in 3 hours. No-one called. So I called back and 20 mins again someone answered and I explained to her and said want to make a complaint (you can only complain by phone helpfully) and she said I will try and help first. She then looked and the centre had now approved my sick note for 6 months, apparently the person who got it first just rejected note as being for 6 months and then when message went in a higher person had reviewed and put note through as breast cancer and chemo. I also said I would like a payment as no income atm and she said there is one going through and then oh there is a block on it. She then said oh I can unblock it and you will get it on Wednesday and its the first 3 months in one go so that is good. I just hope I gave the right bank account number as I did the original form on steroids and just remembered my bank number. That seemed fine on steroids and normally I know my bank accounts and sortcodes but will see on Wednesday. Think its at the work rate initially of £75 a week or so but she said she think I will be put in the support group later but we will see. I now have a 28 page form to fill in and the hospital or GP has to fill in 2 pages as I am doing chemo, like they don't have enough to do and I don't have enough stress. And I have to wait for their envelope and only use black pen in capitals. Argh but at least £1000 is hopefully coming my way on Wednesday.

And had arranged oncology video call for today at 9.20am as going away today. Get a mycharts thing changed to in person at 12.10pm, argh. We were leaving at 12pm and hospital always runs 1/2 hour late. Messaged and managed to get it back to video at 12.10pm which isn't too bad though its never on time. Could potentially do in car on the way as DH is driving. Though we have lots of things to do before we leave and DH is still sleeping.

Neuropathy has been almost zero this week but yesterday suddenly very difficult to walk with right leg / foot. I managed it but gosh was difficult to just get to bathroom and pain. Weird as fine until then. Had a bath but whilst pleasant did not relieve it. I do want chemo to go ahead on Monday though as its only my fourth. I am bit concerned as oncologist seems keen to stop altogether / keeping delaying and think staff shortages are quite a big part of that, delaying this week made sense. Will see how it goes. Also will see how leg is over the weekend. I would be quite happy to do rest 3 weeks on, 1 week off. Though do need neuropathy monitored as do want to be able to walk at end of it. Looking forward to 3 nights away.

Love to everyone.

Good grief @Silkierabbit, you will need those three days away!

Am taking my DDs away Sunday night to the Links Market, a big fair in Kirkcaldy. We went every year till lockdown, but they both want to go this year now it’s back on. The hotel is very near the fair, so I will walk down with them, wander along for a wee bit, then leave them to it as it starts to get dark and more teenage oriented.
That is my plan anyway, I will be taking filigrastin on day 3 so might not be up for much walking, but we will see! Haven’t gone on the rides for a few years as I’ve got fatter and older and the girls have got more daring!

Today would have been my 19th wedding anniversary. DH was just starting to get ill last year, but we thought it was IBS or an ulcer or something so we decided not to do anything and wait till this year when he would be better.🙁 .I was blissfully ignorant of the breast cancer too. What a difference a year can make to your lives and outlook on life. I miss him. Fuck all cancers.

Here’s to all of us who are still here, and to those we’ve lost and to those we are losing. ❤️💔💔❤️💔

Just saying hello again. Have had an appointment to go back to London to see surgeon but a. I think it's just to scope me and look at my wound (which is fine)
I am still having difficulty swallowing and it's really hard to get food down. Feels like I am suffocating unless it's baby food. I assume it's normal as it's only been a week since surgery.
I need to see surgeon to book in radiotherapy but I feel so low and almost like a stubborn teenager. Surgery was difficult (ten hours) and I had major trouble after anaesthesia (strida)
Partner thinks I have depression but I don't feel like that. I just feel angry.... cancer was found incidentally as I already have bowel cancer it just took priority.
I am just finding it hard to get going in any way shape or form.

Sorry should have said
Had PET scan pre surgery for tumour in bowel and found incidental cancer in neck, thyroid, lymph nodes etc. Had it all removed which had left a massive scar but it's not too bad. I just feel fragile and I am normally so robust. Have had numerous bowel ops.

I am going out of the house but I feel like everyone stares and I feel quite teary

Sorry for moaning.