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!

@Enigma54 thinking of you for your scan tomorrow and I'll say a little prayer for you tonight xxx

@Fantasea Thankyou so much, that’s very kind of you ❤️

How have things been with you? X

@Enigma54 oh you're so welcome xxx.

I'm not so good I'm afraid - since Sunday evening I've had a lot of bleeding with clots, really dark blood and I could feel the clots coming out. It has really frightened me and I've felt in permanent panic, clenching my jaw sort of panic. I phoned the CNS yesterday first thing who contacted my oncologist who said he wasn't overly concerned as this is to be expected with disease in my bladder. He wanted my haemoglobin checked so I've had that done today and the CNS phoned me this evening to say it was 145 so that's ok. She still hasn't had an email back to her request to urology for my bladder wash 3 weeks ago so messaged them again yesterday. When I spoke to her today she said there was still no reply so she's going to ask my oncologist if he can suggest anything more to get hold of them. I'm so desperate I'm willing to have a go now. The bleeding has slowed a bit tonight but I am so frightened of it ramping up again.

What has really upset me is that the chemo will stop the bleeding and if I had been on treatment without all the delay I've had, this would not have happened.

@Fantasea I am so sorry to hear about the ongoing bleeding. Hoping and praying for resolution and @Enigma54 I’m hoping for good scan results for you too. I had lab work today. Platelets were 81,000. They’re supposed to be over 100,000 I think but no call from chemo ruse so I guess it’s a go? I haven’t had any chemo for 3 or maybe 4 weeks now? I guess my bone marrow is having a rough time. Whatever is going on I’m just hoping chemo is still an option.

@Fantasea I’m sorry to hear this awful bleeding is being problematic; I totally understand how frightening it must be for you, especially the clots. I think in your head, you need to tell yourself that once chemotherapy starts, the bleeding will subside and this is a temporary “ blip”. Obviously if you were able to start chemo earlier, you may not be in this situation now. All very frustrating! Your HB is good, so that’s reassuring to know that the bleeding isn’t affecting your HB levels. Hang on in there! X

@Sbmpp fingers firmly crossed that your chemo can go ahead soon. I know how frustrating and scary it is being off chemo. I’m on month 4 of no chemo now and I am terrified of what’s been going on! Nothing I can do now though.

Scan at 5.15pm today. Results on the 20th October. Give me strength! 😳😬

Sending love and good wishes to everyone x

@Fantasea I am shocked at the amount of hurdles/delays that you have to go through to start your chemo. I would be absolutely bricking it as well if I saw blood clots down below. At least your haemoglobin is behaving itself.

@Sbmpp I hope your platelets come up. Do you have to inject yourself with those Filgrastim (?) injections? Do you have any news yet whether your chemo will be going ahead? When is your next session meant to be?

@Enigma54 Everything in the world crossed for you! 🤞🤞🤞🤞 How do you feel in yourself? Pain doesn’t necessarily mean progression, I mean, look at me, pain free yet crap results.

I have had a rough time after the second injection last week. This time it was gastrointestinal-related: sooo much smelly wind and trips to the toilet, swollen gums, non existent appetite, sore eyes, general feeling of extreme crappiness. I have been spending so much money in M&S Foodhall buying little bits and bobs (I am in no fit state to cook, can just about make baked potatoes and macaroni cheese for DS), then finding out I can’t eat any of it (foul taste). Also, so many things are spicy or have some sort of spice/savoury added to it, I need everything to be as bland as possible. 😭 I am only now emerging from the hell, and am now on a 14-day break. I dread repeating it all over again on 28th October. Still questioning how am I going to withstand this crappy treatment. I made the mistake of Googling progression free time on this treatment for stage IV, it said 3.1 months. Absolutely not worth it for the hell I have been going through. It is hard to find any up to date info as the treatment has been going on since the 1970s and has now largely been supplanted by taxanes and anthracyclines. I have been crying a lot just feeling sorry for myself.

And I am meant to go quad biking with DS tomorrow, Lord give me strength!

@Sbmpp I'm really hoping you've got sufficient platelets for the chemo to go ahead and you can get back on it really soon. I am going insane with not being on treatment so I really do get how you must be feeling.

@Enigma54 The amount of blood and the size of the clots was freaking me out. One of them yesterday was like a small plum. It seems to have eased off quite a bit now but I'm fearing every loo trip. You're right, I'm holding onto the thought that the chemo will stop it, just got to get round until then.

Hope your scan was running to time and you're home and resting now. I'm also keeping everything crossed for your results next week xxx.

@balkanscot I had a load of hurdles and delays when I had my chemo last time but then they could blame it on the pandemic.

I'm really sorry to hear about your awful side-effects, it all sounds totally miserable. Eating was so hard for me on chemo last time and I existed on baked potato with grated cheese most of the time and could hardly eat that. It is very expensive being ill isn't it, I wasn't prepared for this, all the different food plus taxis getting around really adds up. I also Google far too much, I do understand and no-one wants to see stats like that. On top of all this, you're managing it all alone with a young DS to look after, you poor thing. No wonder you feel so dreadful. I hear you on the crying, I have made the skin round my eyes so sore with crying so much that it has started flaking off. Hoping you get to go quad biking with DS tomorrow ok.

Lots of love to you all xxx.

@Enigma54 Not that long to go now, 20th October is soon. I wish my scan results can be reported so fast, my usual waiting time seems to be at least 4 weeks. Although my time between my next one and the actual report is 2 weeks, seems like a luxury almost.

@Fantasea I can imagine the stress of not being on treatment and visualising cancer marauding around. That 0.1 % of control we have left gets pulled away by waiting. At least when you are on active treatment there is this 0.1 % thinking we are “doing something”. It is extremely important psychologically. So sorry to hear you have been crying a lot as well, every little thing gets me blubbing, life in general, EVERY LITTLE THING. Literally.

Quad biking is the pits and I don’t know why people love it (I feel the same way about rollercoasters, too). I hated every second of it and on top of it all I managed to veer off the track into a rhododendron bush and screamed my head off thinking I will die (quad biking toppling over me and pinning me down is my greatest fear). I had to finish 10 minutes earlier and that means DS had to finish 10 minutes earlier as he couldn’t continue on his own (being under 16). He was so sad and upset about it and also petrified about me screaming and I booked us again tomorrow afternoon. I am mad and clearly want to get hurt so that if cancer/treatment doesn’t finish me off, quad biking will. I also overdressed, so was sweating buckets, my head was on fire with heat of the mesh and helmet, I thought I was going to pass out. Then I got the shock of almost crashing I felt absolutely unreal (and not in a good sense). But that’s the reality of being on your own with a teenager who loves adventure. I cannot have DS missing out on things because of fucking cancer, I WILL DO IT BY HOOK OR BY CROOK. He will have miserable enough time when I will be in the process of actively dying, so no way am I going to get cancer stand in my way. Even though I HATE FUCKING QUAD BIKING AND WISH IT WOULD DISAPPEAR OFF THE FACE OF EARTH. 🥵🤬😡 I just wish I could stay all day on the sofa in the lovely cottage we are staying in and not move a muscle.

@Fantasea Indeed it is an expensive “hobby” having stage IV. We went to for lunch today and everything on the menu had something that I couldn’t eat due to one side of my tongue being so sore. In the end I chose what I usually do when having lunch there, only to discover that the mild tomato chutney in my cheese sandwich was different and that it contained 🌶️. I usually love chilli but right now it can fuck off. And everything seems to be slathered in it. You don’t notice until you are forced to.

And don’t get me started on traffic and gazillion of roadworks and coach loads of tourists roaming about like zombies. There is not a place on Earth anymore that isn’t overcrowded. This can also fuck right off. At least the cottage we are staying in is off the beaten track and is perfectly remote and peaceful.

@balkanscot oh my word, the quad biking sounds horrendous, not my sort of thing at all and I would hate every moment. I did go-karting, only once, when I was in my early twenties and was asked to leave as I was going so slowly due to my terror that it was a danger to the others. Never ever again so the thought of quad biking is awful. I can't imagine the fear of going off the track and the horror you must have felt. That on top to feeling faint with the heat and almost crashing, it sounds totally dreadful. I can completely understand you doing it for DS and wanting him to have these experiences with you, and also for rebooking, I'd do the same for my DD. It must all be so hard for you doing all this on your own too. Your cottage sounds gorgeous, really peaceful and relaxing. Hoping you can relax on the sofa after your ordeal today.

I'm relieved I'm not the only one constantly crying, and yes everything sets me off at the moment. My bieeding got going again yesterday evening and overnight and I am in despair. I spoke to the CNS again yesterday who has rechecked with my oncologist and he still isn't 'overly concerned' but that doesn't make me feel that reassured. I suppose medically my Hb is fine and I can still wee so not any immediate danger. She has emailed the Urology CNSs to try and arrange this bladder wash as she still hasn't had a reply to her email to the consultant over 3 weeks ago. I found the Urology CNSs to be totally useless during my brief stay with that department. Their 'direct line' is never answered and goes to the voicemail of the 'head and neck secretary', I mean what? I pointed this out to them after my consultant appointment and was told I was mistaken, I jolly well was not. I just feel so abandoned and defeated by it all.

I'm so sorry to hear your tongue is so sore, I had that on the maintenance and was thoroughly miserable. A cheese sandwich sounds safe but how disappointing to then have it ruined with some chutney. Everything is magnified when you're suffering. Having stage IV is so expensive - I now take taxis to my many hospital appointments as there is never anywhere to park at the hospitals (plural). I have had so many taxis that I have the same drivers turning up quite regularly now, we pick up the conversation where we left off, quite sad really.

Really hoping today's quad biking isn't as traumatic as yesterday's for you X.

Hello all
@balkanscothave you recovered from quad biking now? It sounds very traumatic indeed! I think I would feel the same as you and I also hate rollercoasters! Is DS back at school next week, or does he have another week off? How is your sore tongue now? I think thats one of the worst chemo side effects and VERY underplayed. It’s horrendous how our mouth and tongue is destroyed by bloody chemo. I remember being on doxorubicin last year and thinking I will never be able to eat and drink normally ever again! Plus I hate how these wretched drugs interfere with our taste buds, urggh! It sounds as though the cottage in which you stayed at, was peaceful at least? When is your next chemo? I echo what @Fantaseasaid about having to do all of this on your own, that’s just not fair! Do you have good friends who could take DS on a few ‘experiences’ with their kids? Well you are doing a grand job under the crappiest of circumstances.

@Fantaseahow are you getting on? What’s the bleeding doing now? I totally understand your despair at having to wait for treatment and your oncologist not being ‘ overly concerned. I think that would tip me over the edge, especially with the clots you’ve been experiencing! I agree wholeheartedly, stage 4 is expensive. I need to fill in some petrol claims, but the form looks so complicated, I don’t know if I can be bothered! 😕

It’s good you can still wee; that’s one of my main worries now, that the blasted cancer is going to obstruct my tubes completely! When does your chemo start again? ( apologies if you have already said down thread somewhere).
What’s happening re: this bladder wash??

Scan results on Tuesday 😳 God give me strength!

DD “ popped” home yesterday (a 5 hour train journey!) and said I must ring her when I know the results. I mean how do I protect her from this crap, commonly known as my“ living hell”?? Maybe I can’t, or shouldn’t? You can’t really sugar coat such ghastly news, can you? Thankfully she has a good support network ( I hope!) so that helps a little guess.

Love to you all x

@Fantasea I really hope you will get a definitive date about starting your chemo,. My oncologist is so on the ball that she chucks me off treatment for tiniest of progressions and immediately puts me on the next one. I can’t fault her on that even though she makes me quiver every time I see her or hear her booming Greek voice, thinking what bad news does she have for me now?

@Enigma54 Your scan results WILL be good. 🤞🤞🤞I have no idea what to say to DS after I hear my next set of results on 16th December, right before Christmas. Do I lie for the sake of having a peaceful Christmas, considering I had a miserable one last year (spent it in hospital)?

I had to phone the chemo helpline to ask tj what to do about my eyes - they are so sore and watery. Apparently this is a sign of dry eyes, so I got some eye drops. So now that’s under control I have another bloody issue. The heavy duty gloves I was given to wear first time around (quad biking) rubbed my skin off near my left thumb. It now looks quite angry and is sore, so I have been slathering it with Fusidin cream (anti bacterial for skin infections). I have also marked the red area around it with a surgical pen. I really hope I don’t have to get on the phone to the chemo treatment helpline AGAIN!

Mucositis just takes the last ounce of enjoyment out out life (eating), it makes you thoroughly miserable. I am dreading the next cycle at the end of the month.

Hair is significantly thinning out, it looks so wispy and “dead” (lifelessly dry).

There are a few people near me who could take DS in an emergency but I feel I can’t impose on them to take DS out for the day. One of them has got her own health issues (Crohn’s) and is a single mum as well (divorce) and she doesn’t drive. Another one has 3 children and is in the middle of a divorce. And my really lovely friend moved back to Denmark, so she is out of the picture.

I went quad biking second time around the following day, just so that DS could get a full experience and it was much better. I didn’t crash! 😂 But I still wouldn’t do it out of my own free will and I still think quad biking can get in the bin.

I also took DS to a football match yesterday afternoon. I couldn’t care less about football but there you go, being a parent isn’t about you, it is about them. At least when you are still legally responsible for them before they turn 18. And this lunchtime I took DS and his friend bowling as they are under 16 and cannot bowl on their own just yet. Luckily, DS is now at his friend’s house for the afternoon, so I can have a brief but so much needed rest.

Thinking of you all. ❤️

@Enigma54 I've had Friday night and all day yesterday with not too bad bleeding and now today it's started back up again. I am so utterly sick of this and it's really frightening me. I'm should be reassured that my oncologist isn't overly concerned but I feel so helpless and abandoned. I just want it to stop. My chemo starts on the 2nd November so 2 weeks tomorrow. I have the pre-op the Friday before, any time between 9am and 5pm on the phone and I'm already fretting that they will forget to phone me and then my chemo won't be able to go ahead. I live in permanent fear that I won't be able to wee and I'm really sorry you're going through this too. I just want it all to go away.

It's so hard when we have to tell others our news and I completely understand your feelings over having to tell DD, wanting to protect her but feeling she has to know. I will be thinking of you on Tuesday and keeping everything crossed for you xxx.

@balkanscotyour oncologist sounds terrifying but extremely competent. I'd be a wreck seeing her too.

Having your scan results on the 16th is so hard, I do understand. Your side effects sound terrible, sore eyes and now your hands too, it sounds very similar to the Caelyx I'm going to be having. The mucositis is seriously underplayed as @Enigma54 says, it sounds so minor for people who've only had one mouth ulcer at a time. My chemo is supposed to cause hair thinning too, mine has never really recovered from 5 years ago and now I have grey straw so it couldn't look much worse. Losing your hair is an outward statement to everyone that you're on chemo and that's the part I hate.

I'm so pleased your quad biking was better the second time and you could go to football and then bowling with DS and take his friend. Hoping you've got your feet up now and can relax for a bit X.

One thing that has really shocked me now I'm stage IV is how I get everything out of all proportion. I decided to do the latest security update on my phone as I didn't want it to do automatically in the night in case I needed it then. I started around 2pm and the little bar thing took ages to get going with more and more worrying time frames for its completion, at one stage it said '8 hours remaining'. It has just finished, over 2 hours later, at least not 8 hours, but then once I'd put the passcode in, showed just a white screen for about 10 minutes, however many times I did it. It's back now but this is something which 6 months ago I would have seen as a minor annoyance and checked later, I don't like this person I have turned into.

Lots of love to everyone xxx.