Thread #7, living with incurable cancer. Taking ALL the drugs and remembering our lovely friends

[sellotapechicken]

The other thread was full! I am waiting for the oncology assessment unit to decide what to do with me tonight. I keep spiking temps but it goes after paracetamol so they can’t decide if it’s a reaction to immunotherapy or not..

Hoping this works!

@balkanscot Do you know I have yet to have an MRI of any kind? I think I’ll ask my oncologist next time I see her. @Earlandmrsgrey I hope the picc line goes well. I’ve never had one of those either. @Enigma54 I hope your pain is under control. It’s just one more thing that’s part of the cancer package isn’t it? It’s Sunday morning here in the US. We had time change last night. It’s cold,rained all night (we desperately need it), there were college football games all day yesterday and pro all day today (American fb). It keeps my mind occupied with something besides the big CA. Last but not least my dh is making homemade gingerbread!!! I love that man to the moon and back.

@balkanscot thank you, yes, I've waited months to start chemo so am relieved I don't have to wait any longer. It occurred to me earlier that bleeding from the ovarian disease in my bladder must be the same as for bladder cancer patients who are constantly bleeding, they can't be dashing off to A&E every day whilst on chemo. I'm hoping to discover how that applies to me.

Still no Difflam spray, this is ridiculous now! It's a sad state of affairs when you can get morphine but not something which you could (and I'm with you on not buying it) buy over the counter.

I can relate to you being dizzy with worry having discovered you aren't taking your cyclophosphamide tablets exactly as prescribed, I'd have been exactly the same. I had the chemo brain so badly last time so I can relate to this.

@Earlandmrsgrey oh yes thank you, I've had a weekend eating all the things I soon won't be able to taste and spending time with my DD which has been lovely. I'm really sorry to hear about your dMIL, that must be so hard at an already difficult time.

@Enigma54 how is your pain now? Thinking of you X.

@Sbmpp oh my goodness, homemade gingerbread sounds amazing. The last time I had that was when I made it at school about 50 years ago!

@Fantasea Good luck with your chemo today, I hope all goes well. You’ve waited long enough, now at least you can get cracking on attacking that cancer where it hurts! Thinking of you and glad you had a good session of the “ reverse diet” at the weekend. Let’s hope your side effect are minimal and you get that Difflam pronto! 🤞🤞🤞x

@Enigma54 I am relieved today is finally here and the waiting is over. Thank you for thinking of me X.

All the best for today @Fantasea. Hopefully there's no waiting about and that the chemo is kind to you but brutal to the cancer. Make sure you don't leave without a bottle of Difflam...you are not paying for it!

I've booked to go away on Saturday for a couple of nights, staying in a windmill in Rye. Maybe a trip to Hastings and Battle Abbey as well. Never been before.

MIL situation is an absolute nightmare. She's back in hospital and once again not being honest with health professionals. She's knackered her kidneys by not drinking all summer during the heatwave and despises her stoma. She has been so rude about the stoma and people that have one that I've found it insulting (I had one put in when the tumour was removed). She's also been writing to her sister saying she's fine, talking to her on the phone saying she's fine. So much so that her sister is now really, really angry with us and not believing that she's been lied to. Honestly I can't put it in to words how angry I am with her. If she'd looked after her health and seen a doctor years ago when the d&v started then she wouldn't be in this situation. As it is the cancer hasn't spread and she likely would have had years left. It's so bloody unfair, she wants to die so much and I want to live and at every turn my opportunity to live has been thwarted by more growth.

@Earlandmrsgrey thank you for your kind wishes X.

I'm really sorry to hear about your MIL. I would be so angry with her too, you are dealing with all of this while your own nightmare is going on and her behaviour is really so irresponsible. I would find it incredibly selfish and so hard to deal with when you are trying everything you can to stay alive. My own 92yo mother is massively doctor avoidant (but with nothing acutely wrong with her) and we as a family spend a ridiculous amount of time 'managing' her, energy none of us have really got. That is so insulting about your stoma - mine was the same when it was a possible outcome of my major surgery and that was before I even had one!

I'm hoping your trip to Rye staying in the windmill is lovely and you can get some peace and rest before your chemo X.

@Fantasea How did the chemo go? All OK? Any side effects yet? How often do you have it, weekly?

@Sbmpp I don’t normally like too many gingery things, although I will always make an exception for gingerbread, yum!

@Earlandmrsgrey Did you get the transfusion done?

@Enigma54 Any further developments re: pain? I hope it is under control, as much as it can be.

I am pleased to report I got my Difflam, yay! 🙌 The things that get me excited these days, eh? Had my second round of CMF on Wednesday, looking forward to the 14-day break. Skin is getting increasingly red and inflamed, planar plantar and paronychia, extremely dry hands. Had to nip to Boots to grab some urea-containing creams. Not cheap, I can tell you.

Hey all, how’s things?
@Fantasea Really hoping your chemo went well and no grim side effects? What’s the bleeding doing now?

@Earlandmrsgrey how’s the bathroom coming along? Is it this weekend you are off to stay in a windmill? Did you get the iron infusion? Hoping that your pain is still being managed with paracetamol?

@Sbmpp I am partial to a bit of gingerbread; pass us a piece please? How are you feeling?

@balkanscotglad you got your Difflam, thank goodness! How does this chemo compare to the others you’ve been on, in terms of side effects? Sounds like your skin is suffering the most? Always blooming something eh?

My pain is intermittent; some days okay, other days, rubbish. Still meddling with a cocktail of drugs and creams to take the edge off.

Going to try and nab my teachers pension, under ill health retirement. I didn’t do many years ( stress and burn out) but enough for a lump sum and a small monthly pension to work alongside my local government pension, PIP and ESA. No doubt I will hit all manner of obstacles along the way!

@balkanscot Picc line went in earlier today. Straightforward procedure and able to drive straight afterwards.
Iron transfusion takes place just before chemo on Tuesday. They've explained the pump to me today and it looks fairly manageable. Had to come home with the most enormous sharps bin though for all the pump bits.

Glad you finally got your Difflam!

@Earlandmrsgrey I didn’t find Trabectedin too bad. Just a faff being attached to the port for 24 hours etc. I hope you get on okay with it too. I’m hoping to go back on it, if/ when my heart function improves.

@balkanscot and @Enigma54 Passing the gingerbread over! @Earlandmrsgrey Good to hear about the Picc had no problems. I think it was last year (? or late ‘24) I had the “lemon”. The chemo would go into the yellow plastic thingy it would slowly wrinkle into a crumpled thingy as it delivered the chemo that the nurse would then dc. I didn’t like being attached either. I hope that all made sense because I think my head is spinning.
My chemo just this past Wednesday was canceled again. My platelets were even lower and now my gums are bleeding. Petscan is Monday. I see my oncologist Tuesday. Maybe I’ll ask about the confusion re: palliative vs hospice care, or maybe I don’t want to know yet. My grandson has been having frequent headaches which just aren’t normal in a 4 yr old. I’m truly concerned but I won’t let my daughter know unless the doctor does nothing.

@balkanscot I'm sorry to hear your skin is so sore and hope the urea cream helps. Nothing that they say 'oh just buy some over the counter' is cheap for cancer is it? I'm so pleased you've got your Difflam sorted, you must be so relieved after waiting so long. How is your mouth this time and how is your tongue healing?

@Enigma54 being in pain like that must be so wearing. I'm really hoping you can find a combination which works for you. Good idea to try and get your teachers' pension and hoping it's not too difficult to get.

@Earlandmrsgrey your picc line insertion gives me hope if I ever need one. Why are the sharps bins so full? They gave me a massive one for 4 weeks of blood thinning injections before my surgery. Hope you and your DH have a lovely weekend at the windmill.

@Sbmpp I'm really sorry to hear your chemo couldn't go ahead, that must be very demoralising. I'm really sorry to hear about your little grandson and can completely understand you keeping your fears from your daughter.

I've had the chemo week from hell so far. My appt was Monday at 2pm but I wasn't called in until 3.30pm only to find my consent forms hadn't been signed by a doctor! The nurse said she'd call the registrar who did sign them and email them over but that delayed things further. I then started the Caelyx and after about 30 seconds, after the nurse had gone, I could see flashing lights, had a numb cheek and lips, my legs felt so heavy, and could feel my heart banging in my chest. They hadn't given me a buzzer so I shouted at the man in the corner to get me some help and I was shouting out 'someone help me please'. Four nurses came in and gave me piriton and something else to bring me out of it and then I had the worst panic attack of my life and couldn't come down from that. There is a 'no visitors' rule but the sister asked if I had someone who could be with me. Luckily, DD was in Costa on her laptop in the main building so she came over and then I calmed down. We agreed to try the Caelyx slowly and it went though ok. It was too late for the Carbo by then so I had to return on Tuesday morning for that which they ran slowly in case of another reaction and that was fine.

I have been struck down by the most appalling constipation though. My last movement was Monday morning and I had avoided my usual pre-chemo Laxido as the onc had said the Caelyx can cause diarrhoea. I hadn't accounted for the anti-sickness tablets though and I got a double dose as I had to go on two consecutive days. I have been trying to ease out this huge bung since Wednesday night, all day yesterday and then throughout last night. I got so desperate this morning I got a lubed gloved finger up there and manually hooked out bits to get it started. Sorry for the tmi. Now, 8 hours later, I can finally sit down.

On the upside, my bladder bleeding seems already a bit better, I can't really believe it but so thankful as mentally that helps. No bone pain or sore mouth yet but it's probably too soon. @balkanscot I thought of you in the unit, I asked if they had Difflam I could take home and I got one on each day, only the bottle though. I plan to get some every time now so I've got a stock, my mouth was so bad on maintenance that I couldn't eat. My chemo is every 4 weeks.

I was brave last week and emailed my CNS to ask if I would qualify for an SR1 form and apparently I do. I already claim ESA so phoned this morning to report a change of circumstances. I'm going to phone the PIP line on Monday to apply for that. I have spent so much money this week already, round trip taxis on both days were £80 each, I've had to buy a better thermometer than my existing one, a few essential bits in the hospital shop etc. and I've only just started. Cancer is an expensive business so the PIP would really help me.

Love to everyone xxx.

@Fantasea Boy you’ve been through the wringer! Can I ask what is Difflam and what is it used for? I feel you about the severe constipation. I’ve also had to go the gloved finger route. What is funny (not in a “ha ha way”), is that many years ago when I was an ER nurse I would have to do that to these “little old ladies” who came in filled to the brim with a bm. I remember one time the doctor came in and told a pt she was “filled with s**t” (I could not clear out the impaction). I’ve vowed to never be that little old lady. Zofran does it to me every time. Probably the chemo too. I hate cancer.

@Sbmpp Difflam is the brand name here for benzydamine hydrochloride liquid used for inflammation of the mouth and throat from ulcers, mucositis and sore areas. It numbs and heals at the same time, I find it really good. Oh goodness me, I'm relieved I'm not the only one to go the gloved finger route for constipation, it was so bad. Now we are the little old ladies! I've just looked it up and Zofran is the same as ondansetron, I had one tablet on both Monday and Tuesday, oh and one to take at home on Wednesday so the blockage was severe. I had erased so many of the horrors from my first diagnosis 5 years ago. I hate cancer too.

Hi ladies, just popping on to say for those suffering with constipation, chemists do something called glycerine suppositories- they are a miracle worker! Just run the tip under some warm water and they very easily go up. You will 100% have a bm with in 20mins. They really soften any impaction xx

I refuse the ondansetron. Have to pick bits out of my stoma if I take it...would rather be sick!

@Fantasea What a nightmare start for you. I've twice watched people have reactions to their new chemo. Scary but the nurses were on it both times and both patients continued their chemo after antihistamines. I'm hoping it goes more smoothly for you next round.

Well today is interesting. DH and a have gone away for the weekend. 2 hours into our journey I get a phonecall. The district nurse is at my front door to flush my Picc line. This wasn't explained to me yesterday. She only talked about how the nurse will visit the day after chemo to remove the pump. District nurse isn't too concerned, but if course now I'm really scared about clotting. If I start to feel at all dodgy we'll seek medical attention. My little Picc book does say that it needs flushing after 24hrs but I went straight round to a friend's yesterday evening as we were booked on a glass fusing craft workshop. Ooops.

@Earlandmrsgrey A minor detail they forgot to mention? Will they be coming back tomorrow? I don’t have experience with Picc lines but think that because they are so important they should be able to go an extra day? I hope you had a wonderful weekend with your dh.

@Earlandmrsgrey thank you for your kind words. Oh what a shock you must have had to get a call from the district nurse! I'm not familiar with picc lines but am wondering if they didn't mention it as your chemo is on Monday, but it's automatic for the DN to arrive the following day? Some patients might have the picc line put in and then a week or more to wait before chemo so it would need a flush sooner? I'm hoping you and your DH have a peaceful weekend.

@Earlandmrsgrey Your PICC line was only inserted on Friday and the district nurse came to flush it the very next day? How odd. I had mine inserted on a Friday too and then nothing until Monday, when I had bloods taken through it. I had to go to hospital for the weekly dressing change and flush if I wasn't having treatment that week, so you're lucky you're getting a district nurse.

I learned to ask for Heplock any time it wasn't going to be used for a few days, to stop it clotting (heparin - they put it in the line after treatment, flushing etc, and it stops clots forming.) Some would do that automatically but often I had to ask.

If you're like me, you might be scared of catching and pulling it, or damaging it by sleeping on it, but once the bruising from insertion had gone down, it was fine. Keep it covered - you can buy elasticated PICC line covers, but I just used the stretchy bandage tube things they gave me in hospital.

Do you have a shower sleeve for it? You can wrap Clingfilm round if not, but I have a LimbO sleeve if you would like it? I wish I could have kept my PICC line, but I'm only having monthly infusions now, so they said the infection risk was too high to keep it.

How’s everyone getting on?

@Earlandmrsgrey how are you getting on with the picc line? Is it comfortable? Can you shower/ bathe with it easily enough? I hope your weekend away in the windmill is going well and your iron infusion next week, goes smoothly. I’ve had one too, seemed to take blooming ages, from being hooked up, to the final drop being infused!

@Sbmppgingerbread taken from your hand and eaten in one go! Delicious! How are your gums now? I do hope they’ve stopped bleeding? Gosh, another chemo cancellation? What are they going to do about your platelets?

Will you have PETSCAN results on Tuesday when you see the oncologist?

I don’t think frequent headaches in a 4 year old are normal either. Definitely needs investigating, poor little thing, must be horrid. Is he at school yet?

@FantaseaSo sorry that you’ve had a grim chemo week. Having an allergic reaction must have been so frightening? I remember seeing a few people having reactions to chemo within a few minutes and honestly, the staff were over within seconds! Good job your daughter wasn’t too far away, I think it probably is a good idea to have someone present during chemo ( except in my case where I only have DP and he would probably go white and pass out!)

OMG the constipation! Did they give you ondansetron? That turns EVERYTHING to concrete I find. If they said that you might get diarrhoea, I can see why you would take it. Personally, I avoid it like the plague! Has the constipation resolved now? That’s good news re: the bladder bleeding calming, long may it continue 🤞

Definitely apply for PIP! Cancer is indeed expensive and it’s not a means tested benefit either. If you a get a benefits advisor from MacMillan or Maggies, to help you with the form, even better. They are used to filling out the forms and will offer guidance on how to respond to some of the most ridiculous questions!

@Washingforweeks I wish I could use those suppositories because I find the traditional laxatives quite powerful and painful. I need them because I take opioid drugs for my pain. But it’s something about having to insert the suppository, which makes wince a bit!

@Ohjoyohbliss how are you getting on? Are you still on treatment or is it over now? I should check over on your other thread, instead of here.

@balkanscothow are you? Skin and mouth? How is DS?

Well, I’m still plodding along minus any chemo. No two days are the same. One day I’m merrily going about my daily business, other days, I’m paralysed with fear, wondering what the tumour is doing and where!

It’s DD’s 22nd birthday today and I’m so happy to be alive ( even though we are apart) but the ungrateful part of me is now worrying that I won’t see her 23rd. Trying so hard to live in the moment and not look too far ahead. I still stomp and rant like a petulant child, mostly at the unfairness of it all. But, I appreciate to hear this on repeat is boring to most IRL, so I save it for here!

xxx

I totally understand that! But they are a very soft jelly like consistency I promise they aren’t as bad as they sound. Once you’ve tried them you won’t try anything else 🤣 xx

@Enigma54 I'm doing well, thanks. Just on monthly IVIG (intravenous immunoglobulins) because I still have no immune system, and no idea when it will rebuild, if ever. Lacking strength and energy but I'll take all that compared with how I was this time last year.

I feel some survivor guilt because I am currently cancer free, whereas you are in such a horrible situation. That's why I don't post on this thread unless I think I can be helpful, if only a tiny bit. I do think of you often and keep an eye on this thread. I wish you all well.

@Ohjoyohbliss Please don’t feel guilty. It’s not a race to the bottom ( as is often said on MN!) and I for one, am truly happy that you’ve made progress and are cancer free. Unfortunately, there are so many different types of cancers and some more aggressive than others. I most definitely wish you well and hope you remain cancer free for a very long time.

@Washingforweeksokay, I will try the suppository method and try not to be a complete baby over them! 🤞

These are what I get you can order off Amazon, or chemist. Run the tip under warm water first. Promise you won’t regret it 🤣 x

111 in useful shock!!! They were lovely with me yesterday and I'm now booked in to my local cottage hospital to have the Picc line flushed once we get back tomorrow. I'm still a bit bruised and my arm is sore but I don't think it's as bad as I thought it would be. Obviously the port is nicer but I think with the district nurses coming out to me every week I shouldn't find it too inconvenient. I've got a couple of limbo shower covers and some colourful sleeves. Mostly I'm just nervous of people banging in to me.

I've had a lovely time in Battle and Rye and we've mostly just mooched around the shops. Eaten too much food and drunk too much coffee. I've been so busy that I managed to go for 8 hours without painkillers! Just got back to the windmill after watching the sun go down over Camber Sands. Husband became very emotional...I feel so guilty when he cries.

I've been reading up on Trabectedin side effects. It seems that it's either constipation or diarrhea. Do I start with laxatives on Tuesday or not?! Could be messy if I go down the diarrhoea route!

@Ohjoyohbliss Don't feel guilty. We started our threads at a similar time and I'm pleased you are doing so well. You've had a really rough time x
Are you able to have a port put in for your monthly infusions? The insertion procedure itself isn't as easy as for the Picc line but it means no cannulas which I hated as my veins have run away.