Cancer Support Thread 85 - Hoping for a positive 2023

[AGreatUsername]

Starting a new thread as the old one is almost full.

Welcome one and all, this is a thread for those with cancer and those who are awaiting tests for cancer. We offer support, a place to rant/vent/cry and ask questions without judgement. As always maybe we can do a quick who’s who at the start of this thread for newbies.

Heres hoping for a positive 2023 for us all.

Hi @HauntedDishcloth I’m under some excellent nurses who are using high tech dressings to clear the gunk from my wounds. I’m sensitive to most things like sutures, glue and dressings so it usually results in a mess. All I can do is try to get plenty of vitamins and rest up.

Exemestane makes my joints hurt badly, and my skin itch. I also got a headache a sore throat and a cough but that might just be a virus DH gave me. Time will tell. The weeping and misery might be drug related or just a very understandable reaction to the never ending crap Cancer brings to our lives. I like @thesandwich idea of Hippo time. Wallow thoroughly then move on!
I hope the rest of you are coping better this week than I am.
Top

@TopOfTheCliff - so sorry to feel you're feeling low and poorly. I hope you see some improvement soon but in the meantime I like the idea of hippo time too. Being a strong person doesn't mean you have to be strong 100% of the time.

Hi everyone, so pleased to hear that there has been good news for @KefaloniaKid and really feeling for everyone who is feeling down. @TopOfTheCliff what a stubborn wound! But sounds like you are stubborner, managing such a long bike ride, I know who’s going to win (sorry wound!)

I am feeling rather hopeless today, I am meeting a surgeon in a couple of days where next steps would be discussed. I’ve had a better week but the reality of the quickly growing mass on my back hits me every day in the mirror. I lost some sensation in the surrounding tissue too now. It just sucks. My fatigue did not go anywhere and I am not very good at putting the weight back on. That’s all bad signs right?

has anybody else felt fatigued before their cancer diagnosis or does it mean I should be preparing for a late stage diagnosis?

@Anxiouslikenoneother I think symptoms can be very individual rather than indicative of a stage. So I wouldn’t worry about the fatigue necessarily! I’m not sure on the rest though sorry I am no help.

The whole rollercoaster sucks, it’s not easy, you’re allowed days or weeks where you’re sad or down, it’s normal. Do you have a Maggies near you? I refused to use Macmillan etc as that would mean acknowledging I was struggling but I did pop into Maggies a few times just for a cup of tea and there are always people to chat to you, listen to you air your feelings or just offer you a biscuit. Highly recommend.

So glad your news is positive @KefaloniaKid and sending you well wishes @TopOfTheCliff - I'm amazed at the energy you have to keep posting and sharing your knowledge, even when you're feeling grotty yourself.

My news - fingers crossed - today might be my last day at the dressings clinic for me! Op for tiny breast cancer back in September, that initially healed well, but the hematoma caused the wound to break open after radiotherapy. A couple of infections later, hopefully I'm near the end of the current treatment.

Our much loved family dog who was DH's best mate died in his sleep at the weekend - I need to plan things to distract DH, and to make sure we get on with our lives. Cancer can go to hell - I have a life to live - and after the last few months - appreciate!

Sending love and thoughts to everyone here.

Also sorry you're feeling so low @TopOfTheCliff . It's very hard to "sit with difficult feelings" (as one therapist wisely told me) isn't it, when it's the last fucking thing you want to do, especially if you're used to be being active. Life is so unfair & I'm joining you in your rage room to smash some things. (although I haven't got the energy to actually smash them either, so it might be virtual smashing).

I went swimming this morning after school drop-off in the hope it might give me some energy & also I want to start exercising again ...nope ... totally wiped me out, I feel worse than before & I had a three-hour nap this afternoon! I've got a NEVER-ENDING bug/cough/cold ... my immune system is really suffering with the Pablociclib. One more week on it to go before I have a weeks' break & I really hope I start to feel better soon. I've had this big for about two bloody months, it comes & goes, gets better for a few days & I feel good ... then it comes back ... & I'm so fed up of it now.

I started taking a lot of mushroom supplements to boost my white blood count ... which seemed to be working ... but the last blood test indicated they were fucking my liver, so goodbye to them ... I've heard Manuka honey might be good for WBC but honestly I don't think much nutrition-wise will win against such a powerful drug.

To all of us feeling BLAH. Well, FUCK THAT.

But great news @KefaloniaKid , so nice to have something positive!

Yeah, what is UP with this respiratory virus? I finally succumbed last week and oh lordy last weekend was NOT FUN. And it isnt even Covid! Yesterday and today Ive been a pile of sads out of frustration and feeling like crap. Nothing like having to cough a bunch when you have a hip issue going on too. Ive barely left the house because Im supposed to be resting this leg and I swing from feeling ok to feeling awful. I may just hold the olaparib for the next three nights to see if I can get enough boost to get over this mess. Its like being back on lockdown!

To be fair I think this is the first real illness Ive had that isnt a) cancer or b) covid (once!) in about 4 years so I guess I was due. Oh wait, no, I think I had a sinus infection last year. I did notice this cold seems to go up and down - the guy upstairs had the same cough (ask me how I know!) and he was barkin' for a good two weeks (I think I shouted at the ceiling one morning something about cough suppressant and how he should Get Some). Partner had a shorter, shallower illness two days ahead of me but doesn't seem to be back to his normal pep yet either.

New box of tissues was added to the Waitrose order tonight!

@ajandjjmum yay for the wound healing.

@mowly77 you’ve made me laugh for the first time this afternoon. I am going to line up some things to glare fiercely at instead of smashing them. Pictures of people who annoy me and the weeds in my garden I am too feeble to cull. Thank you and I hope you feel better soon too.

I actually worked out that a series of happy pictures is good for morale. My great niece in her Christmas bear hat, my DDs puppy, snowdrops, DH on his bike. I’ll bob up again soon.

@TopOfTheCliff I got too optimistic with the nurse's comment last week - it hasn't healed and there are signs of infection! At least I don't feel shit, just a little fed up. More antibiotics!

You've reminded me that I've heard really good things about Manuka honey @mowly77 - think I'll give it a try.

@ajandjjmum oh no! I fall into that trap every time. She always says it looks good and next week it will be healed… every week 😂 It gets your hopes up and then they are dashed but so nicely. Sending sisterly sympathy.

Im not sure if you can take Manuka honey on chemo. I bought it but Im too scared as Incant find any literature and its so expensive and full of sugar.

my pancakes were an epic fail. I must make them from scratch next time.

@EachandEveryone there was a trial of special Manuka honey where the bees feasted on echinacea pollen and to everybodies surprise the honey they produced actually seemed to stimulate white blood cells in cancer patients. It now sells for £37 a jar! Also nurses use it neat under a dressing in soggy wounds to draw out infection. It certainly won’t do any harm but I bet they faked the research 🧐

I bought some emu oil last week in my my stupidity i thought it was nothing to do will killing the animal. Honestly the way they market these things as been organic etc I thought they were cruelty free😕 so thats not coming out of its box unless im really desparate.

does anyone get like chilblains on their hands and feet? Very annoying,

@EachandEveryone I've taken manuka honey daily during my chemos, radiotherapy & surgeries , just a teaspoon in either overnight oats or a build-up smoothie. I remember going on a chemo prep shopping trip in lockdown to get it, amongst other things, & it felt very surreal handing over ££ for honey in Holland & Barrett. I did get the medium expensive honey for my primary intense chemo but since then get cheaper ones online. My bloods were ok during chemo & I do attribute it to having the smoothies, but with no particular evidence!

I’m feeling so, so down today. Like a total piece of shit failure. DD has been waking in the night for two hours, anywhere between 1am and 2am, and it’s impossible to get her to go back to sleep. She’s not hungry, just wide awake. Last night I tried bringing her in with me and she just kept pinching and poking and scratching me for about an hour and it hurt and I just lost it - started sobbing, put her in her cot in her room and said “don’t fucking sleep then”, went out into the hallway and just screamed at the top of my lungs. I was just so bloody angry, I thought I would be sick I was so wound up. DH had to come and take over and he was supposed to be getting a night of unbroken sleep in the spare room as he’s not had one in ages. He never loses his temper, ever, even though he’s tired too. I then cried myself to sleep because I felt like such an horrible useless excuse for a mother and woke up two hours later feeling exactly the same. I can’t believe I said that to her and got so angry, I’m a terrible person. My parents used to lose their shit at me all the time and I swore if I ever had a child I wouldn’t ever do that to them and here I am having done it.

@WorryMcGee , I'm sorry - that sounds really tough. It must be so hard to be going through this with a sleepless little one. My elder DD was an appalling sleeper - up for at least 50% of every night, and it nearly broke me. I found it harder than my cancer tbh, so to be going through both together must be unbelievably hard. You didn't harm her - you put her down safely and got out of the room, which is exactly what you are supposed to do if you get to breaking point. Sure - it's not great to have shouted at her, but you were at the end of your tether, and it's understandable. She won't remember, it won't scar her for life. You're not like your parents. Losing your shit occasionally when things are unimaginably tough isn't the same as losing it all the time - it's not an absolute all or nothing. And you need your DH's support here - I'm sure he would prefer you to wake him if you are feeling like that again.

@EachandEveryone I have had chilblains on my toes over this cold weather and have attributed it to poor circulation. The first night my toes were itching and burning I diagnosed 'toe cancer' but then remembered that I had chilblains when I was a child. Now I'm getting a flare-up every time my feet get very cold. I am on blood thinners as well as chemo so I don't think that helps. I've read there isn't a cure, only to keep them warm and not let them get warm too fast from being cold. I read on the outside of the Sudocrem pot that it was good for chilblains but as it's 'inside' I don't see how this can help, only to ease sore skin, but I plastered some on anyway. Mine come and go. I think you only need to worry if the skin breaks as that's a risk of infection, so keep them well moisturised.

@WorryMcGee don't be so hard on yourself, you're going through the worst time and you are exhausted. You haven't harmed your baby, she won't remember and you made sure she was safe. My DD was a shocking sleeper and I didn't have one unbroken night until she was 5 years old and I was healthy then. I was desperate for sleep and I also shouted at her in the same way and felt terrible. It's not ideal, but you're human with so much to deal with on top of exhaustion Xxx.

Thank you for being so kind @Fantasea and @dotty2. I don’t feel like I deserve it. Maybe I should post in AIBU so loads of people can pile on me instead. DH keeps saying I didn’t raise my voice at DD I just sounded “harsh” but that’s terrible in and of itself and she would have heard me screaming in the hallway anyway, I expect the whole street did. I can’t pick myself up today like I normally can when I feel shit, I feel so sad and small and horrible. I think I’ve finally broken.

@WorryMcGee - I'm sorry you feel so low. We are so often our own harshest critics. You don't need to be a perfect mother - you just need to be good enough. Your DD hearing you being angry once won't outweigh all the love and patience I'm sure she usually gets from you. But I get that you are in a sad and difficult place today and saying that probably won't help very much. What are you doing today? Can you try to focus on doing something that might lift your mood a little? Could you get out for a walk, or see if a friend was free for a chat?

@dotty2 I can’t seem to stop crying so haven’t achieved a great deal today but will need to pull myself together before it gets dark as the dogs need a walk. The non sleeper has been cuddled up under a blanket asleep on me for the past hour and a half and is still fast asleep now. I keep telling her I’m sorry (I’m making her hair wet crying into it, she’s going to be annoyed with that when she finally wakes up!) but it’s not making me feel better. I suspect it’s not just this incident making me feel this terrible, it’s probably everything and this was just the final straw.

@WorryMcGee it’s no good asking us to punish you for your breakdown. We are not the vipers of AIBU and we have all been down there at one time or another. You are just proving that we all get to enjoy Hippo time whether we want to or not. But it will pass and you will no doubt be extra loving with your little one who will have no memory of all this.
I remember a day when DD1 was about 4 and drove me to distraction refusing to get dressed or put her shoes on. Eventually I threw one shoe at the wall shouting loudly and it marked the wall. She looked at me with such gleeful satisfaction that she had broken me. She was good as gold after that having made her point. She is a happy capable 31 year old now but I still remember the shame I felt for my outburst. I think it is the ability to reflect and apologise for our failings that distinguishes us from the continually abusive parent with no insight. You are not a bad parent just a very tired ill exhausted one! Sending hugs xx
I am feeling a bit better today, thankfully.

@WorryMcGee please do not beat yourself up, we all lose our temper sometimes. And the reason your husband doesn’t lose temper is probably because you are still the primary caregiver to your baby and do spend most of your time and wakings with them, whereas he does not. It is different when you only have to do it on occasion. Caring for someone 24/7 is a tough job even if it is filled with endless love. so please don’t be harsh on yourself, especially since your husband said you did not raise your voice at your baby. i am sure he is right as I can relate sooo much and I know that it gets worse in your head when you are continue to relive the moment and you think you sounded worse than it actually was. Plus you have been going through so much, you are way more tired during the night than moms who have no worried on their plate. It’s really hard and I know that I am only giving my boy around 60% of what he deserves from me, the other 40% is just too consumed with the fears of unknown....

also it does not sound like you have done anything terrible at all, you were just tired and upset . Your baby was safe, not hurt, and the dad stepped in to comfort them when you were tired so they were well looked after. It sounds like a perfectly normal situation in a loving family where you look after another ❤️

@AGreatUsername thank you for your thoughtful reply to my Walker post, I really appreciate it.

we do have a local charity where I am and they are great, also Sarcoma UK helpline have been just tremendous. I am still however struggling, I guess I am not one of the strong willed and determined people. I can only admire the strength of ladies in this community.

@WorryMcGee I read your post and just wanted to give you a massive virtual hug. Parenting is hard at the best of times - never mind with sleep deprivation, but dealing with the cancer shitshow on top of that…you must be physically and mentally exhausted. It sounds like you are a wonderful and caring mum. Please be kind to yourself.

I hope those with healing wounds have had a better day and a little more healing has happened today.

Always one to jump on a band wagon…I bought a jar of Manuka honey today!! I did gulp at the price. 🤦🏻‍♀️

@WorryMcGee please don’t beat yourself up. My youngest didn’t sleep for several years, I was broken and did something very similar one night - and that was without the cancer as well. I honestly don’t know how you are coping with both and it is understandable that it got too much. Your baby won’t remember this one off incident, just the love and security you give every day.