Cancer support thread #76 - newbies welcome!

[Bloodybridget]

Here's the next thread for anyone at any stage of cancer, from noticing a possibly warning sign, through tests and scans, diagnosis, treatment and beyond. Come on in for advice, sympathy and support.
The last thread is here.

If you've been on a previous thread, please come and say hello and introduce yourself!

If you are a relative or friend of someone with cancer and looking for support, please look for other threads; there is one in Life-limiting illness for partners - link to latest. This one is for cancer patients ourselves.

Oops, there you are! . You have totally bloody ear-wormed me now !!

I'm having to wear these sexy old things at night, just for insurance as I try the ten yard dash to the downstairs loo. "Blessed", as the lady in the advert says .

For the scientifically minded among you, today I caught my pee in a bowl I put in the toilet pan, then measured it: 1.4 litres . No wonder I feel desperate as soon as I wake up!!

@BitOfFun is chemo-wee like a thing then? Because I have really wondered how it's possible for a person to make such a quantity. I was up in the night - and then again first thing. It's astonishing. I'm surprised I don't just turn into a prune overnight.

I think it must be a thing, when I was on EC I was up 3 times a night some times

@Bloodybridget I was neutropenic after every cycle. I'm surprised they haven't included GCSF as part of your cycle - this is the new chemo right?

Nasal drip/chemo cough - I was full flow post transplant and yes it's partly to do with no nasal hair. I ended up taking Sudafed nasal spray to dry it out. At that point I was on so many meds it made no difference to add another. Thankfully nose hairs seemed to grow back first. As soon as they did my nose dried up.

Also had to measure every wee for a month @BitOfFun. Which really irritated me as I felt I had enough to think about with chronic diarrhoea and being fed through a tube. Going to the toilet turned into some kind of military operation 🤦🏻‍♀️

I just had to come and post this. I'm just finishing Amir Khan's 'The doctor will see you now' where he's talking about practicing during the beginning of the lockdown and he says: '... everyone had done such a good job of painting us as warriors that I simply couldn't bring myself to tell anyone about how I was feeling.' Sound familiar?

@InOtterNews I'll have to try the Sudafed spray.

AAAAAAARGH- it was 0.4 litres!! . I'll never make a scientist...

Acinonyx2 and anyone else suffering stomach problems, you have my utmost sympathy. I have ulcerative colitis and a symptom when I flare is extreme urgency - I am an expert at the desperate poo waddle! 😂 I find it really useful to know where the nearest toilets are while I am out, as it just gives me an extra layer of confidence - I have a thorough knowledge of all the facilities in my town. Of course, Covid adds an extra layer of uncertainty cos some are shut now. I also have a radar key so I can use disabled facilities. If the stomach problems are likely to become a long-term feature it might be worth considering getting one?

Bloodybridget the mouth thing sounds really horrible. 🙁 I have some slight mouth soreness after my first round of chemo and it's incredible how debilitating it is - I can't imagine what it must be like to have it so badly for such a long time. My dentist told me to keep chewing sugar-free gum all the time - might that help? Although I expect you've tried everything under the sun by now!

Thanks BitOfFun for posting my blog link. It's not anything fancy at all - it was really** just a way to keep friends informed without having to repeat myself a million times. I find it attracts the "brave" and "inspiring" comments, too, and I am afraid I just ignore them. I don't know what to say in response without sounding really angry. I don't want to be inspiring - I want none of this to be happening.

Hi everyone I feel a bit of a fraud as I'm still hoping Chemo etc won't be needed.
I've just moved house, which was extra traumatic as my removal company basically pulled out having done most of the packing eg 5 pm the day before I was due to move. I managed to find someone else miraculously, but it didn't help the stress.
And just as we were finishing up I got a phone call offering me an op this Tuesday. They decided it wasn't practical as I couldn't household isolate from that day, but it should be next week, which will be ideal as my daughter will have finished college for the term.

@AlbertCampion Nice blog - only read a tiny bit for now. I also had a condemned women's prechemo curry (can hardly manage a bit of ginger now) and I also pack for a week when I go to chemo. I can't imagine wanting anyone with me TBH that would just be irritating - like being stuck on a bus that isn't moving for hours. Laptop, ereader, books - fine.

DH has UC so just smiles knowingly at my toilet antics.

@MollyButton Always good to have a firm date for things. I hope your daughter is the helpful type.

Went to see the surgeon today and nurse was quite shirty about my cough. @KentishMama do they ask for covid tests constantly due to your cough?

@MollyButton how extraordinary of the removals company to pull out halfway through! Hope you are starting to get settled now. Good to have a date for surgery.

I'm on my way home from hospital, having spent 2.5 hours there to discover that my bloods still aren't good enough. Postponed for a week, and I have 5 injections to do at home. Utterly tiresome.

I always read this thread, but rarely post now. I had very early BC at the start of the year, all sorted now and just on Tamoxifen for the next 5 years. I was incredibly lucky. But, I chose not to tell anyone other than DH and my employer, mainly because I couldn't stand dealing with all the Brave Warrior nonsense. Like we have any choice other than to just live through each day as it comes. I certainly didn't fight. I just endured.

@MollyButton I'm pleased you can have your surgery next week.

@Bloodybridget oh no, that is disappointing, you must be exhausted. I can imagine that to get your hopes up and then to be sent home must be so demoralising. I hope your blood will have improved by next week.

@peaceanddove I can understand you only telling your DH and employer. I have only told a limited number of people that I have to tell.

Well I have finally got my first appointment with the oncologist for Wednesday. It is a telephone appointment which surprised me. Has anyone else had this? I have started to make a list of questions. Is there anything in particular I should ask?

@Bloodybridget very demoralising - but those injections do tend to work so hopefully you will soon be back on track. They can make your bones ache - we were chatting about this upthread and I said I take a Clarityn antihistamine before the injection and it definitely helps - just in case you find similar.

@peaceanddove I understand your discretion although I seem to have gone in the opposite direction!

@FizzyOrange my first was f2f but then phone and this week will be video. I think I'll prefer video to phone - I like to read the face and body language. Can you ask for a video call?

Other people seem to have had all sorts of discussions about treatment options and survival curves but I was just told I was doing x, y and z. I checked it all out myself and was satisfied with the choices. But I am myself feeling like I would like to backtrack and have some of that conversation, i.e. how much do the different treatment options actually add to my odds. I signed a consent form saying we'd talked about this and what would happen if I had no treatment - but we didn't so I might bring it up this week. I sense my onc does not like to do stats and I understand why - an individual can never be a statistic. Still - the numbers are out there and I'd like her version of them. But perhaps don't ask for more info than you're ready for. Maybe I'm more ready for the numbers game now - maybe it was better to get the big picture first.

If you're doing IV chemo do you want to get a PICC or port put in? They need booking ahead so worth considering now.

Are you interested in cold capping?

Thanks for kind messages - I did have Filgrastim injections a few times last year, and did get some bone pain, but paracetamol helped.
Too tired to catch up properly now but waving at everyone and sending love, good wishes, congratulations and sympathy as appropriate!

@Bloodybridget Thinking of you and hope bloods good for next week. ❤️

@Starmer I hope you are doing ok after last treatment. I can't find your post where you recommended cream for hand foot syndrome. May I ask again what this was. I want to have it in the house in preparation. Many thanks.

Greetings all.
@Acinonyx2 I laughed at your garden centre antics as I recognised that so well. As I’ve been isolating for Ages my wig hardly gets an outing. I actually have some convict style stubble now, and with my limp I make a great escaped convict dragging an imaginary ball and chain.

I’m counting down to surgery on Monday now. My Covid swab is tomorrow and I’ve had my pre op chat and got my heart cushion and drain bag. I contacted the charity that made the cushions to say thanks and got some lovely messages from the ladies that make them. Christmas is properly screwed but DH has found a pub doing takeaway Christmas Dinner so we are sorted. I’m just impatient to get it over now and my best present will be to be cancer free if that can happen. I’m scared about the lymph node clearance causing problems and the nurse said I can’t knit or go on the exercise bike for weeks afterwards.
This all feels such an uphill slog. I am pleased to be through the IV chemo but there is still a mountain to climb.
Love to all. Hoping for good results and fewer side effects for you all.
Top

@Acinonyx2 thank you for that, all useful things to think about. I am not good on a video call so will stick with the telephone I think. I am in two minds about the PICC line so will probably go for a cannula for the first session and I have decided against the cold cap. I hate being cold and my hair isn't that nice so I think a scarf would look better anyway.

@TopOfTheCliff good luck for Monday and I hope it goes really well for you. When will you be home? As a fellow knitter I know the frustration of not being able to knit and I would hate that. I feel I am in an uphill slog already and I have hardly begun. I didn't think it would be this difficult to get anything started.

My DVT socks have given me an awful rash on the backs of my legs so another telephone call to the GP this morning. I have never had so many GP appointments in my life. He has said to check with the anti coagulation clinic who said to take them off as I am more mobile now. My legs were so swollen before my hospital admission that I am nervous that they will swell up again.

@TopOfTheCliff I am excited and curious about your surgery in a not unselfish way as I will be having very similar end April (seems like years away...). Is it a lumpectomy or mastectomy? I'm also scared of complications from the node clearance.

I'm not a knitter but I play guitar (stopped just now due to neuropathy and it seems my fingernails would like to join my hair). I play in a group online - not sure I can keep that up in Jan - already missed quite a few .

I put my wig on again this morning and went to no less than 3 shops (admittedly 2 were pharmacies, but hey). I could overhear people muttering about making the best of Xmas, someone's daughter getting a covid test. Felt slightly Dickensian - if Dickens were writing now.

@FizzyOrange I didn't consider cold capping either. I'm building a beanie collection. Do tell us your plan.

@ChocolateandCheese We are all thinking of you but no pressure to post.

@FizzyOrange I loved my picc line it saved me no end of trouble. I hate needles and it saved all that.

My op is a day case lumpectomy but complicated by Covid. I have to present at 9am at the Breast Unit for a wire to be inserted under local anaesthetic and X-ray guidance into my breast to attach to the titanium maker which is in the site of my tumour. Then DH has to drive me over to the Covid free private hospital where I am on the afternoon operating list. Once they have tracked down the marker with the wire they will scoop out a melon ball of tissue and if it goes well the marker will be in the centre. Then they will clear all the lymph nodes out of my armpit and leave a drain in place.
If all is well I get a cup of tea and a biscuit and go home. If not I stay in overnight and sample the famous private patient menu. Then Christmas week is a round of phone reviews, Herceptin injection and wound dressing with drain removal on Christmas Eve I hope and pray.
Today was another day of excitement as I got in my car and drove round the block then I ransacked the fridge and made a beef casserole and pickled some red cabbage.
First time I’ve driven or cooked in nearly eight weeks! I’m clearing out things and stocking up before I go incapable again. It feels like the clock is running down and I have to get everything done by Sunday.
Regards to all. I bought a card with a picture of the Philosophical Fish saying “Maybe I am the wisest of all things because the only way I know is to live in the moment”

Evening and soft hugs all round.

I start radiotherapy and chemotherapy tomorrow, I need to be there at 9am and will be there all day as cisplatin takes at least 7 hours to be given.

It also marks 5 weeks of daily radiotherapy visits with weekly chemo. I’m not sure how I’m going to cope as the hospital is an hour away. They have said they can organise transport if I need it.

@TopOfTheCliff I hope you get to experience the private hospital experience. Conversely, I am going private for my care and there may not be space for me to have my operation at the private hospital as all the operating slots have been booked by the NHS.

It does mean I get all my drinks, snacks and lunch provided though tomorrow although I have got some emergency wine gums for my bag.

Good luck with your surgery @TopOfTheCliff! It sounds very similar to mine - I had to have guide wires inserted at one hospital, then was driven by DH to the swish private hospital (as an NHS patient) where I had my lumpectomy. The private hospital was lovely - private bathroom, fancy sandwiches and tea and biscuits! I've had 37 lymph nodes removed and although the drain was a bit of a drag I found the recovery quite quick - I have a full range of movement now and only some loss of sensation in my upper arm. I can't shave my armpit because of the scar and I have to use roll-on deodorant around it (rather than spray), but apart from that I feel back to normal, two months on. I hope yours is as trouble-free as possible!

I've been given the date today for my lumpectomy 29th December.
This Monday I'm having a magaseed put in. Covid test on Boxing Day.
Everything is moving quickly. It's not sunk in that I have cancer yet.
Not up to speed on the terminology. Only diagnosed on 7th December.
I have been told that I won't need to have herceptin.

Good luck to everyone who is having an operation soon.
Take care.

Hey all. Hope everyone's ops, chemo etc goes as well as it can. Hugs if needed or flinging a v sign at life (if that's more suited).

Spend 2 hours at the hospital today getting my preop. Feels weirdly real, where it didn't really before. I think I'm @TopOfTheCliff fish most of the time but today's been a bit strange. Anyway, just checking in with you all.

It does mean I get all my drinks, snacks and lunch provided though

I am usually seen at outpatients these days (though it’s been a year since I was last there in person - time flies - ha!), but sometimes, if there is Stuff Going On, it’s in the day unit where the haemo chemo is done. And all patients get fruit and biscuits. And non-chemo can nick any left over sandwich packs.

The sarnies are usually dire, but they do have good biscuits! (minute silver lining)