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!

@Fantasea Thank you. My consultant is very abrupt at times and just the sound of her voice is enough to make me quiver but she is always proactive and not prone to dilly-dallying. Her demeanour this morning was quite upbeat despite “your scan is not good” at the start.
Bingo re: jealousy of your own mum, same here. My mum is 90, blind through hereditary glaucoma and in a nursing home because of it but otherwise as healthy as you can be when you reach that age. Visiting her is always a double edged sword and I always get consumed with irrational jealousy. I am also jealous of my own brother (10 years older than me) who had colon cancer 7 years ago and has not had any recurrence since. He is also BRCA2 positive but he hasn’t been affected in the same way as I have been. And I feel insanely jealous of him, he still has his wife (whereas my DH perished with the wretched glioblastoma in 9 months flat) and independent children. And here I am, all on my own with a DS who is still a minor, living with this god-awful incurable disease, dealing with all the shit it brings completely on my own. Add on to that the usual shiftiness of every day life and trying to help DS with homework…

Too late to edit shiftiness to shittiness.

@balkanscot I have had a couple of consultants in my 'journey' who I've been frightened of, it's hard isn't it. Yours sounds good in respect of proactivity and getting you started on treatment immediately. Sorry I wasn't clear, it's my baseline CT tomorrow. I'm still waiting for a chemo appointment as there's a 3-4 week backlog, well 2-3 weeks now, which is the final insult after the months I've been waiting so far.

I'm reassured I'm not the only one to be so jealous of my elderly mother. We have a rather strained relationship at the best of times and she has reverted to the stance she took during my first diagnosis, which is to treat me as though I'm milking a bad cold. I can understand you being jealous of your older brother, carrying the same gene but escaping for 7 years with a wife by his side and his children are independent, that must be so hard. I'm so sorry to hear of your DH, he must have really suffered. I've been a single parent for a long time but can't imagine it happening in your circumstances, I'm so sorry. As you say, your DS has all the usual stresses and worries with school and everything else, it must be really difficult managing this on your own while dealing with your own health and treatment.

How did your first chemo go? X

@Fantasea I get it now, CT planning is on today. I remember I had one for the purposes of my double mastectomy/reconstruction surgery. Waiting to start treatment is always worrying as you feel like you are in no-man’s land. I was lucky my new treatment started on the day I found out the results - I had an appointment anyway for my now “old” treatment a few hours after the appointment, so I think that was the saving grace. It seems I didn’t have to wait for the “wash out” period like I sometimes did. I have been Googling (will need to stop now) about CMF, it is one of the oldest treatment for both primary and secondary BC, it is just over 50 years old and has now largely been supplanted by taxanes (like Paclitaxel) which did absolutely nothing for me and atnracyclines (like Epirubcin which bought me almost a year). But that apparently still has its place as it is less toxic. And I read about it only “buying 3.1 month of progression free time. Fuck! But I need to stop as it only serves to alarm me by me extrapolating all sorts.

The problem seems to be that I am still in the pattern of thinking that I want to be on a treatment for years like some people can be. But they are mostly “freaks of nature” and in terms of Stage IV months rather than years is the time scale in terms of how long treatments are effective for. And that they are not curative. Deep down in my mind I still carry an infinitesimal thought that my liver can keep on for years. I suppose we all have this infinitesimality (?) otherwise we would end up on a psych ward. I know I would.

CMF consists of a weekly injection every week for 2 weeks, then a 14 day break. I start taking tablets on the same day as my first injection, tablets for 14 days, then a 14 day break which coincides with the IV break. Ad infinitum until the next CT scan. My pre-meds now also include 5 steroid tablets (alongside the usual Granisetron) and the usual steroid-taking for 3 days in a row afterwards. I still hate the fuckers and they made me feel so nauseous yesterday as I had to take them with water and they inevitably get stuck to the roof of my mouth where they start to dissolve 🤢🤢🤢 which makes my mouth all bitter. I didn’t realise I would be taking again, otherwise I would have been armed with some yoghurt.
And a lady sitting next to me had a reaction to Paclitaxel - I remember it well when it happened to me. Twice. Before they budged and gave me a more expensive version (Abraxane). Which did fuck all. But I digress.

@balkanscot I'm pleased you could get your chemo started yesterday with no interval to let the other one leave your system. I'm sorry to hear the steroids made you so nauseous, that's not what you need at all. I hope the side-effects are manageable and I completely understand the need to stop Googling, all this waiting for treatment to start gives me more time to look stuff up and I really need to stop.

I do understand what you mean about the expected longevity of these stage IV treatments, I've wondered the same. I'm on a few Facebook groups for ovarian C and there are a few ladies who've lived for 10+ years but I know that won't be me. You're right about the psych ward, I could qualify now, I keep coming over all hot and panicky.

Oh my word, having an allergic reaction must have been terrifying and seeing it happen to someone else yesterday must have taken you right back to that time. I too will be on every 28 days but think I only have to go once at the start for both drugs.

I'm relieved to have the CT out of the way with no dramas, nice and fast with only a few minutes waiting which made a change.

Before Google there was only a dictionary and/or an encyclopaedia. How I long for those days!

Oh, yes, I forgot to mention that my DB is having the luxury of retiring “naturally” in 15 months’ time. Whereas I retired “unnaturally” 18 months ago. Some people may say that I had a choice to stay on, but I would never be able to stay for the full term (67 years) for obvious reasons. And I just couldn’t work out how I could continue on working due a traumatic bereavement (DH) and having to take care of a ND bereaved child, with no family of my own nearby to help. And, of course, I joined stage IV camp 2 months after DH’s death.

i get irate when I hear cancer “influencers” talk about how supplements/eating only raw veg/smoothies are helping them “beat” stage IV. It can have benefits in terms of making your body in a good enough of shape to withstand being bombarded by constant treatment but it does not make a single iota of difference to keeping their cancer at bay. If this was the case, oncologist would be prescribing this and more people would live decades with stage IV. Plus, each person’s stage IV is unique. Some have less mutations/are prone to mutate less frequently. Mine has a bastard ESMR-1 mutation which is more resistant to treatment. Lovely! And is still ER+ but has developed hormone-treatment resistance. Double lovely!

i do seem to rant on a lot - apologies!

That should read ESR-1 mutation. Can’t even spell my own mutation right! 😂

@balkanscot you're right, wouldn't it be so much easier if we just had the dictionary and encyclopaedia, I'm sure I'd be a lot calmer.

Oh dear, that's very hard for you watching your DB retire 'naturally', that must feel so unfair. Of course you couldn't work after losing your beloved DH and looking after your bereaved DS alone, then joining the stage IV camp so soon after. It's very easy for others to judge what we should and shouldn't be doing. I'm saddened and somewhat embarrassed to have to report that my own mother is the person who tries to make me feel guilty the most for not working. It's a topic for a whole other thread and I try to ignore it but it really hurts.

Oh yes, if only we had eaten the 'raw fruit diet' or some other mad food then we wouldn't be in this mess. It does feel rather 'blaming' if you know what I mean. I am trying to eat as healthily as I can but also I want to keep as much weight on as I can. I got painfully thin last time and so I am doing a 'reverse diet' so eating lots of biscuits and cakes while I still can face food. I had someone at a hobby group last time berate me for even considering eating anything with sugar in it and I got so paranoid that I asked my oncologist about it. He said that cancer cells need energy so if you don't eat sugar, then they will use some other food group instead. And yes, a lot depends on the individual and their particular 'profile'. I'm so sorry to hear about your particular mutation and hormone resistance, it's all so unfair.

How are you feeling today? X

@Enigma54 thinking of you and hoping you've got your meds now and that you feel a little more comfortable X.

@balkanscot thank goodness your scan results were in the main positive and that you were able to start chemo promptly. Let’s hope CMF kicks these lesions butt and you get plenty more time with DS. What have you got planned for October half term, anything nice? How is DS’s toe now? Ingrown toenails are horrid, proper grim ( I’m not a feet fan!) How was the chemo? Hope you aren’t feeling too awful? What happened to your DH, is no way fair at all! I hate all these adverts which claim “Together we will beat cancer” Well how exactly??? People keep on dying sadly. Suppose the treatments are better nowadays? I am also jealous of both my younger brothers, who get to keep working ( probably until 67). They barely set foot in a doctors surgery, let alone be diagnosed with S4 cancer!

@Fantasea When will you get the results of your scan? I bet you have mixed feelings about chemo; feelings of dread and then wanting it to start asap? It’s a shame your mum makes you feel so bad, that shouldn’t be the case. We need to be surrounded by people who can understand this shit show, not make us feel bad about the situation.

I am with you on the “ reverse diet” Stuffing oneself with sugary stuff, while we can both face and taste food, seems the right way to go! I don’t feel one bit guilty over my excess sugar consumption because in the event that I should get back on chemo, I know half of it will taste grim anyway! How dare that person at hobby group, berate you for eating sugar. Bloody cheek! 😡 I’m not going to get years from these treatments either sadly, it’s just not going to happen. I joined then deleted the sarcoma FB group; far too depressing! Did you get your bladder flushed?

Well, still feeling rage and fed up.
Keep asking “ what is my life now” because I don’t recognise it! I also need to reign in the jealousy Anyone who looks seemingly healthy, gets a death state from me! 🙈Of course I have NO idea what they are going through, so my bad all the way. That’s what cancer has done to me; made me green with jealous and envy!

Sitting looking at my prescription. I can see constipation with my name on it! Pain vs constipation, great!! 😬

death stare I meant!

@Enigma54 I don't know when I'll get the results of my CT, my oncologist said my next appointment would be after my second chemo cycle but I don't know when that will be yet . I have been panicking that my cancer has got so much worse in all this time I am waiting without treatment. You're absolutely right, I am desperate to start chemo but terrified all at the same time. Thank you for understanding about my mother, she will never change and our relationship is strained at the best of times.

I'm pleased you're also on the reverse diet and are making the most of it, me too! You're right, nothing tastes good on chemo. I stay away from the FB groups too, far too much doom and gloom. No word on my bladder wash and I haven't had the strength to chase it. in a way I don't want it as I fear it will make the bleeding worse by knocking off a scab, I can't see how just water would stop bleeding as the disease in my bladder is what is bleeding and that's still there.

Cancer has changed me too and not in a good way. I get irritated so easily now and have this burning jealousy, I know what you mean about your brothers not going near a GP surgery in years, it's just so unfair.

The constipation I had on chemo was unreal, I do understand you fearing it. What do you usually take for it? I had the Laxido sachets which are vile but work, not immediately though. It's miserable isn't it? Thinking of you X.

@Fantasea I’m just so sorry for all you’re going through because I’m doing the same things pretty much. I’ve always done the reverse diet 😝. You’re so right about everything tasting bad. At the beginning of the year I had spaghetti with Prego sauce every night (or morning or lunch!) for two months! At the moment I’m just not hungry anymore. Agree on the constipation too. The irritability too.. It’s all there..my fingers are crossed for the bladder wash. Is there anyone on your care team who can explain it all? I’d be concerned too. To all the mums here you are always in my thoughts and prayers.

@FantaseaYou have to wait until after your second chemo cycle for your scan results?? Crikey, I would be climbing the walls by then! You haven’t started chemo yet even. I do hope you can get them sooner 🤞

I totally empathise with worrying about the cancer worsening, whilst you are off treatment. It’s almost like when we are on treatment, we are being proactive and hopefully obliterating the cancer. But whilst we are off, it’s having a party in there! I’m convinced my cancer is everywhere now, given how long I’ve been off treatment ( since June!!) Yet I have to wait for the worst possible news, until I can get back on treatment 😬 Welcome to hell!

The relationship with your mother must be tough, especially now. However, you need to conserve your energy for what’s to come ahead and that’s what matters I guess. That and those who care and understand your situation.

I also understand you not wanting the bladder wash. My tumour is very close
( if not attached to) my bladder and all organs in my pelvis. If I ever need an internal examination, it will be a blood bath! I don’t want ANYTHING disturbing that damm tumour! I too am confused how water will help your bleeding? Have they said how they think it will help?

Hard agree re: being a changed person. I try to give my immediate family the best version of myself; smile, laugh, remain upbeat etc. I suppose in doing this, it’s to make them feel better and reassured. DD keeps saying that I have to be at her Masters graduation. I say I will TRY but can’t promise what state I will be in, come next July. Of course, she’s having none of it, understandably. She has a boyfriend who she adores and has got to know his family. I kind of hope it lasts because the more people she has around her, the more support she will ( hopefully) get when the time comes.

The reverse diet is actually rather good isn’t it? The only thing I worry about, is my teeth! Never have I consumed so much sugar in my entire life!! I can’t help myself because I know how awful some foods and drink can taste on chemo!

As for the constipation, well I take 2 strong senna tablets each night. Without them, I wouldn’t go for days. I’m on strong opioid medication for my pain daily, so I need the senna. The only trouble is the predictability is a bit skewed. Usually it’s morning, but sometimes afternoon/ evening/ middle of the night! Not great when out and about and away from a toilet! 😳

@Sbmpp thank you for your kind words. I'm laughing at your spaghetti and Prego sauce for two months! Last time, I had a lot of jacket potatoes and grated cheese as it was the only thing that didn't taste foul. I'm sorry you're not feeling hungry, I'm normally quite greedy but do remember feeling like this on chemo and it's horrible. It was my gynae-oncologist who suggested the bladder wash and the CNS is supposed to be liaising with urology to organise it. No-one has explained how it works. I've looked it up and it appears to be a post-operative treatment to remove 'debris' which may be causing bleeding. My surgery to remover my bladder tumour was at the beginning of July. I think my bleeding is due to disease in my bladder and I'm torn between trying anything to make it stop and fearing making it worse.

@Enigma54 thank you also for your kind words. I could phone the CNS in a few weeks to ask her if the scan results are back and historically, they have been allowed to tell me over the phone. Part of me doesn't want to know which I know is silly, I am just so frightened all the time. You're right, when we're on treatment, we are doing something about it, but not being treated means the beast is on the move. I'm really hoping you can get back on your chemo soon.

I also try to give my immediate family the best upbeat version of myself. I am a single parent so do tend to lean on my adult DD at times, and I worry that isn't fair on her. I have a lovely sister and a couple of close friends who I can offload to but I don't like moaning all the time, it's so hard isn't it. Most of the time, I try to pretend I feel fine. Oh dear, your DD's graduation, that is so hard on you, You're right, the more people they have, the better.

Chemo wrecked my teeth the first time around, having gone from one filling in my whole life, I now have loads. I worry about them with the reverse diet too. I now prepare myself a little snack plate, like the vegetable ones I've seen on YouTube, but mine is an ice lolly like a Magnum, a pile of biscuits and chocolate or sweets!

I'm sorry to hear the Senna strikes at inconvenient times, poor you. I think I may ask the GP for some, a tablet is a lot more appealing than the revolting Laxido sachets which also strike at inconvenient times.

Lots of love to everyone xxx.

@Fantasea Scary times! I do hope your bladder wash gets done and that it does what it is supposed to do. I now have to look after my bladder/wee due to this new treatment which can cause bladder inflammation & blood in urine. Happy times!

I also try and put on some sort of face especially in front of DS but all of this delayed reaction to the mixed scan news has sent me into a spinning orbit. I was so grumpy with him yesterday, wanted to be on my own but couldn’t, tried to get him engaged in something other than his phone or TV and we just clashed. Nothing major, but there was enough negative energy around for the whole day and evening. I don’t have anyone else to lean on. I mean, yes, friends and all that but there is only so much they can do, they have their own families and responsibilities. I need family around but apart from a brief weekly 24-hour visit my my late DH in-laws to see their grandson that’s my lot.

@Enigma54 my DS is saying he wants me around for his 15th birthday next April. Same answer as you, I will TRY my best to be around but who the fuck knows??? Then I feel I need to go into the “Nobody knows how long they are going to live” yadda-yadda. It is awful and mentally exhausting as nobody is looking after me mentally day to day. Yes, of course DS is no. 1 and takes precedence over everything but I do long for somebody looking after me. I mean, he can only do so much and it is not fair on him to be lumbering him with caring responsibilities for me. I want everything that a partner/husband can offer but I can’t. I have kind of hit a mental low since starting this treatment on Wednesday as it feels so much more like “chemo” than before.

And also echoing others, stage IV has changed me into a person that I don’t recognise anymore, both physically and mentally. So much anger towards the world, towards old people in particular, couples holding hands, people with primary diagnoses, I mean, it is all very bitter and twisted and it does make me feel ashamed of who I have become.

I lost 10 kgs at the start of the year when I was in hospital riddled with mucositis and deranged bilirubin. Prior to that I managed to put on about 5 kg extra while I was on Enhertu - it totally puffed me up. I do worry about eating a very monotone diet (Mac and cheese, baked potatoes, rarely any colourful veg in sight) but what the hell! I can feel my sense of taste on this CMF changing and it is shit. Meanwhile, my brother in law will only drink “red” label milk (skimmed) because the blue one has “SO much fat”. I need remember to clobber him next time I hear him mention something like this.

I could never get on with Laxido due to the vile taste. Dulcolax is my preferred choice. I have noticed CMF is making me more constipated but stuff is still happening, IYSWIM.

Being off treatment/waiting to start one is yet another circle of hell. Keeping my everything crossed @Fantasea and @Enigma54 that both of you will come out of this limbo ASAP.

Oh, yes, my hair may be coming off as well. It was a grim sight in the sink this morning. 🧑‍🦲

@Sbmpp thank you. 🙏 It is indescribably difficult being a parent to a bereaved child who is still only 14 and you are the only remaining parent left. Without much family support.

I have to remember it is still not time to cross the finishing line. But with every change of treatment it gets harde mentally to readjust and keep going.

Arghhhh I just want to bloody scream!
We have a blocked drain, on top of EVERYTHING else which needs doing here!! God I hate houses, especially old houses. Bits of plaster falling off, patio needs jet washing, house needs decorating, oven needs a deep clean, things need replacing blah blah blah. On top of all this cancer malarchy! Not fair!!!!

@Enigma54 What a colossal pain in the arse, I get you re: old houses (I live in a Georgian tenement flat with single glazing) and related issues that can crop up just like that, on top of cancer. Is it an emergency job or can you wait until tomorrow? I hate anything that have to deal with that “interfers” with “my” cancer. For example, I have to take DS twice to the orthodontist next week, have to chase an appointment for him with the podiatrist, and have to have a meeting with the school and family therapist to thrash out what help I can get with DS should I need to phone the cancer treatment helpline and go to the hospital (when brother in law and sister in law can’t come up from their house 90 minutes away. I want to curl up and put fingers in my ears. Also can’t be arsed with cooking food - luckily my next door neighbour brought us a few portions of her mac and cheese. And in the middle of this afternoon I got an almighty heartburn from hell for which I had to down Omeprazole.

@balkanscot I'm so sorry to hear you've hit a mental low, you've got so much to deal with and all on your own too, it must be so hard. I can understand you having a delayed reaction to your scan news and when it sinks in, that's when it really hurts with all its implications. Having to adjust to a new chemo with all the new side-effects must be another thing to deal with on top of it all. Oh dear, your poor DS asking you to be there for his next birthday, that must be so hard to hear. I know what you mean about friends only being able to do so much and not expecting more from them, I hear myself whining on and try and restrict the time I spend doing it. My DD is in her early thirties and yet I still don't feel it's right for her to support me as a partner would. I still feel I need to protect her.

I also hate anything that gets in the way of 'my' cancer. It's just more jobs on top of the one you carry all the time. I really hope you can get some reassurance from the school and family therapist about having help for DS should you need to go to hospital and really hope this isn't needed. I'm sorry you've got looxiety with monitoring your bladder/wee - my chemo can do this too so I will have to ascertain from the hospital how I distinguish between this bleeding and my 'usual' bleeding.

Heartburn is awful, my new chemo is supposed to do that too. I'm already on Lansoprazole as I have a hiatal hernia but had to have the dose reduced as it was affecting my sodium too badly. I bought some liquid medicine this morning to have in readiness. How are the other side-effect so far?

@Enigma54 oh no, blocked drains are dreadful, and not what you need at all. It's all too much when you have so much else going on. Have you got it sorted, I hope you have.

@Fantasea I completely understand that you don’t want to burden your grown up daughter with all this 💩, off loading it to a partner is completely different. Do you have any definitive date about starting your treatment?

My side effects got so bad I kept questioning whether I should just say no to it. Heartburn lasted for about 48 hours, just horrendous, Omeprazole was helping a bit but didn’t last for 24 hours (my prescription said to take 1 tablet once a day) and I was scared to take another one. Then the nausea. Oh, the nausea. It has got a bit better yesterday and today but there are still bouts of dry heaving and wiping my excess saliva with a handkerchief. Luckily, I am not actually sick but that’s a small comfort.

I am sitting in the ward now, waiting for my treatment. A doctor came to see me re: heartburn and nausea. Apparently they can give me anti sickness medicine that dissolves inside the gum - I just could not take Metoclopramide as just having the tablet in my mouth that I needed to swallow would trigger bouts of dry heaving. And I am going to get another medicine for heartburn.

It all feels a bit shit at the moment. I hope the side effects won’t break my spirit. I booked a quad biking session next week (half term) with DS - I hate the idea of it but DS is really keen and under-15s need to be accompanied by a paying adult. I am determined not to let DS miss out on life because of me. 🫏

@Enigma54 Have you managed to sort out blocked drain? How are you otherwise? Is your current pain medication enough to take the edge of pain away? Any news about re-starting chemo?

Love to you all. ❤️

@balkanscot I'm really sorry to hear your side effects have been so bad, the heartburn and nausea sound horrendous, you poor thing and I can completely understand you questioning whether you should stay on it, I felt like that last time. I'm really hoping the medicine you got today for the heartburn works much better than just the omeprazole. I was given the 'gum' tablets for stopping vomiting and they were very effective so I hope you have the same outcome.

It all sounds totally miserable and you are dealing with all this on your own, that is so hard. Are two of your four weeks treatment weeks with the other two 'off'? I'm really hoping you are well enough to go to the quad biking with DS next week.

I still don't have a definitive date to start my treatment. Today marks the two week point of the 3-4 weeks the oncologist told me it would take to start and I had tentatively booked my blood test for today. Yesterday, I rang the chemo unit to see if they had a date for me - they have the referral but no date yet so suggested I rebook my bloods for next week instead. So it will be closer to the 4 weeks which is no surprise but very disappointing. At the same time I'm terrified of starting due to the appalling side effects they have warned me about.

Lots of love to everyone xxx

Hi all, how are things?
I did get the drain unblocked
( eventually!) but oh boy, the smell was putrid! Not sure what happened, maybe an accumulation of “ stuff” but I don’t want to see that sight again EVER! 🤢
Since stopping work, I’ve been round the house and noticed every crack and mark. It’s an old property and now I’m wondering whether I bite the bullet and start tackling some of these issues! Trouble is, it takes me an age and a day, just to get the basics done!

The pain is still there unfortunately. Each time I try to increase the oxycodone, I feel sick, so I reign it back in again. No idea what to do. Maybe a stay as a hospice inpatient is what I need. CT is next Wednesday 14th and results
( maybe on the 20th October) Absolutely bricking it! If disease has progressed, back on chemo it is. If stable ( ha ha, as if!) then they will hold off chemo for a while longer, to allow the heart to recover further. It’s all rubbish 🙈😳

@balkanscot Having to parent and manage life solo, must be tough. It’s not at all fair and you have every right to rant and rave. The quad biking sounds fun? I hope DS enjoys 😊
How are you feeling today? I know what you mean about questioning whether you want to stay on treatment. I was like that with docetaxol; it was brutal! Hair loss, fucked up heart and cancer kept on growing. Great eh? Oh and the mucositis. That was a living hell! I totally totally empathise xxxx

@FantaseaFingers crossed you get to start chemo soon. All this waiting does nothing for ones MH, does it? Remember, not everyone experiences the side effects; you may escape, I do hope so!!🤞 How are you feeling otherwise?

I also know what you mean about not wanting to burden your adult DD. I try very hard to remain upbeat when mine is home. Otherwise she has a tendency to go her room and cry 😭 I can’t have that, so we try to keep the upbeat flame alive ( which is hard when you are in pain!). What’s happening re: your bladder flush?

Love to all who may be reading, but unable to reply or otherwise. Xx🌺❤️

@Enigma54 Glad to hear about drain but not the pain. When you say increasing your med. makes you sick is there something that can counteract that? I know adding another med is a pain (I take at least ten+/day) my heart just aches for you. I have started having such a deep ache in my left groin and the pain meds don’t touch it. My left leg is also edematous and it makes me wonder if I have a dvt. I started taking the lasix again (doctor gave them to me to use when the swelling starts but isn’t this treating the symptoms). I had to skip the chemo yesterday due to the platelets being too low again. I am concerned that the chemo is affecting my heart. I’m sorry for throwing all this out there. I’m truly scared that it’s not the cancer that will kill me but a cancer side effect. Sending all of you prayers and positivity and peace and what else can we do?

@Enigma54 I'm pleased to hear you got your drain unblocked, that must be a great relief. I'm so sorry to hear your pain is so bad and increasing the oxycodone is causing such nausea, that must be awful. How long would you have to stay in the hospice for pain management? It's a lot to have to deal with on top of everything else. I'll be thinking of you for your CT next Wednesday and then your results on the 20th, hopefully, and can really understand your fear with either outcome.

My MH is bad, I am so frightened and worried all the time. I'm feeling really tired this week, not helped by having my Covid jab on Monday and then the flu jab today - normally I space them out by about two weeks but want to have built up some immunity if I can before chemo starts. I thought I'd turned a real corner with my bleeding, nothing really from Monday afternoon until this morning when it's back again. I haven't heard anything more about a bladder flush and haven't chased it as I'm not sure I want it as I worry it might make the bleeding worse, but then again, it might help. The oncologist said the chemo would stop it so I'm trying to focus on that.

I do understand what you mean about keeping the upbeat flame alive, which must be so hard when you're in pain, with your DD when she's home. I'm conscious I sometimes use mine as a sort of therapist and that's really not fair, I'm making a conscious effort not to now, she's worried enough as it is.

@Sbmpp I'm so sorry to hear you're in such pain and also that you had to miss your chemo again, that must be very hard for you. I've had a DVT in my leg and it really ached, like a cramp feeling, but started to ease very quickly with blood thinning tablets. I know you're not in the UK but I had an ultrasound and a blood test to identify it and then straight onto the tablets which I'm still on, due to having had a recurrence. My leg was also very swollen and looked sort of red/purple compared to the other one. I hope my experience is helpful and doesn't worry you further, I really understand your fear.

I am holding all of you in my prayers and sending love xxx

@Sbmpp yes there are various pain meds which I’ve got left over from chemo. I do take them and I also bought a non drug based product from Amazon which seems to help too. Hopefully my stupid body will get used to all these drugs! My GP also prescribed this drug called nefopam. It’s non opioid and an anti inflammatory, so maybe that will help with the pain too.

What do you think is causing the pain in your groin? Can you take anything for it? I’m sorry you couldn’t have your chemo this week, what a blow! I know that feeling all too well. Why do you think chemo is affecting your heart? Do you have symptoms? I know some chemo drugs are more toxic to the heart than others. This is my problem right now ( hence why I am off chemo) I hope this isn’t the case for you, as it is very scary.
Try to think positive ( yes “ that” word!) and let’s hope any drug side effects, won’t be too difficult on your body.

Grabbing all prayers and the positivity! ❤️

@Fantaseahow are you today?
I’m not sure how long a hospice stay would be. A good few days I would imagine, to try and get the right drug at the right dose. As you rightly say, not what I need, but what else can I do? Thankyou for thinking of me next Wednesday and for the following Tuesday. Terrified doesn’t come close!

I can understand why you feel frightened and probably mentally exhausted (?) You have such alot going on and you haven’t started chemo yet. That’s a real pity your bleeding resumed. Let’s see what happens once you are on chemo, it may calm a bit? Try to focus on what your oncologist said to you; that hopefully will stop the negative thoughts from spiralling.

I think it’s hard when we have children who are old enough to understand what’s happening to us. In
a way, I’m glad DD is living some distance away. When she is home, each day she asks me how I am and how much pain I’m in. It’s exhausting having to play it down, particularly when we are out for a coffee and I’m struggling to sit down for any length of time. It messes with my head. Some days I just get on with the day and shove cancer to the back of my mind. Then there are other days ( like today) where I’m consumed with guilt for causing the DC so much stress and worry. In my head, I am saying “ sorry sorry sorry” over and over. Then there’s the “ make it go away” plea and no one can, which just makes me angry! Rinse and repeat!

It’s October and the supermarkets are filled with toffee apples. I don’t even like toffee apples, yet what am doing? Eating my weight in toffee apples!! 🙈🙈🙈
@balkanscot enjoy quad biking with DS. I’ve never been quad biking but Its got to be more fun than putting the body into a sugar induced coma from bloody toffee apples, right? 🤣

@Enigma54 I would also think a hospice stay would be a good few days to make sure your pain is controlled and stable. I understand, what else can you do. Of course you're terrified for your scan results, I live in permanent terror so I do understand.

Thank you for understanding about my fear and yes, I feel mentally exhausted and I haven't even started yet. I finally had my call from the chemo unit yesterday afternoon to book me in for Monday 2nd November so another 3 weeks to wait but at least I am no longer waiting to be allocated a slot. I have to have a pre-op the Friday before as a telephone appointment 'any time between 9am and 5pm', I honestly think they should be able to say 'morning' or 'afternoon'. I shall be on hot bricks all day long, especially as it's a Friday and my treatment will be on the following Monday so no days in between in case they don't ring, which is always another worry I have.

My bleeding is still going and your advice is good, I'm trying to focus now on the fact that according to the oncologist, it should soon stop. I think I'd feel so much better if I didn't have that happen for every loo visit.

I do know what you mean about playing down your symptoms with your DD, I'm the same and I don't want the time with mine to be just me whining on about how terrible I feel and how frightened I am, that doesn't feel at all fair. I also hear you on the guilt and yes, most of all, I want it all to just go away, it's all just awful.

How about thinking of your toffee apple consumption as sensible reverse dieting? Oh dear, sugar induced coma, that was me last night - I felt so sorry for myself I ate far too much chocolate and gave myself appalling indigestion, then started to imagine all sorts of awful things.

I'm so grateful for this group and all of you ladies on here, lots of love to you all xxx