Cancer Support thread 86 - Stay Positive

[LemonDrizzle10]

New thread as other one nearly full.

Chemo cat

Thank you all, it's turning into a bit of a bigger operation now because they've found another mole that is melanoma on the other side of my neck, this time next week it'll be over

Sorry to hear they've found another melanoma Ludo though better they find and treat it asap. Hope the operation goes as well as it can.

@TopOfTheCliff that’s amazing! 👏🏻 also crème egg McFlurries are life. I’ve not had one in years as there’s no bloody McDonald’s near me but my next cycle is definitely taking me past one.

Had my radiotherapy CT and tattoos today. Came out in floods of tears. “Is there a possibility you could be pregnant” “definitely not” “and how do you know that for sure, have you had a hysterectomy” “I know it for sure because I look so repulsive I’m sleeping in a different room to my husband because I don’t want him to see me”. Yes, I probably shouldn’t have said that but she followed up with “oh you’re still beautiful just beautiful in a different way”. I’m sorry no. This is not beautiful, that’s categorically untrue, no one thinks no hair/lashes/brows/bad skin is beautiful. I wish she’d just said “oh I’m sorry” or something. But it’s my fault for introducing the topic in the first place.

Yikes @LudoBagman what a good thing you screwed up your courage to get the recurrence sorted out. You wouldn’t have known about the melanoma otherwise.

@WorryMcGee it’s painful to hear you being so harsh on yourself. Does your DH really notice the absence of eyebrows etc? Mine is very unobservant and just likes cuddles in the dark. I could have painted my head blue and he wouldn’t notice at night. Snuggling up to him has been what has kept me going through all the lockdowns and chemo and broken leg and other crap.

I am furious with myself today. My kids organised a nail painting session for me today as a Mother’s Day treat. It was my only appointment and I managed to get it wrong and miss it. I am so annoyed that my brain is so useless. Apart from the lack of a functioning brain I am doing okay. Pah! But I must take my own advice and be kinder to myself.

Sending strength to all
Top x

@WorryMcGee i hope you won’t take this the wrong way, but are you getting any counselling? Or have you thought about anti depressants? I have both (CBT and Sertraline) and both really help with reframing all the negative thoughts and low moods. I know the body image stuff must be so much harder to deal with as a young person, I’m finding it hard enough in my late forties. But if your DH is not an arsehole like mine turned out to be I guarantee he doesn’t find you repulsive he’s just worried about you.

I’m not willing to take antidepressants, they make me put on weight. I have counselling that macmillan set up but I haven’t started yet and I don’t see how it’s going to make much difference. It doesn’t matter what DH says, I know I look terrible and it’s going to be this way for such a long time. That is a fact. No one would choose to look this way. It is not “beautiful”. The thought of being intimate while I look like this turns my stomach.

@WorryMcGee I’ve started the counselling course via Macmillan and although not totally convinced about the benefit of it, there have been some moments of reflection. I hope you find it useful. The change in appearance is awful, I’m with you there…it’s so much more than losing hair…it’s losing confidence and your sense of self. But…and I keep reminding myself, it’s only temporary…although again I know that’s difficult to process when going through it.

@LudoBagman sorry to hear the operation is turning out to be bigger than expected but great that this time next week it will be done.

@TopOfTheCliff what a shame about your missed nails appointment - could they not reschedule? I’m blaming everything on chemo brain at the moment. I keep using the wrong words, which my eight year old then takes great pleasure in correcting me!

I’m sliding here to dump my scanxiety and I haven’t read back.
I saw my breast oncologist on Tuesday evening and mentioned that I’d had a headache for 3 months with an additional intense head pain when I swim for the past few weeks.
He referred me for a CT with contrast scan and they called last night with a cancellation for today. Chemo ward did my cannulation and the radiographer buggered it up attaching the line so it’s sore hours after.

I’ve just got to wait now, but being the world’s unluckiest patient. Sorry @TopOfTheCliff I am expecting more cancer, or blue bum monkey pox!

Oy @MrsPnut don’t you be trying to steal my crown! You have had your time in the limelight and with the best will in the world we don’t want you back. It is well known that there is a bad outbreak of Blue bum monkey pox in the Wolds currently. Keep as busy as you can while you wait and we will all be willing the result to be BBMP.

I can get my nails done after Easter but I am disappointed to miss today as the nail technician was my extra DD at one time. She lived next door from aged 2 to 18 and her mum and I shared child care happily. I haven’t seen her for ages.

Happy Easter All
Chocolate doesn’t taste right at the moment - not going to let it affect consumption levels though.
I’m on the waiting list for counselling, I’ve had a lot of counselling in the last few years (ex was and still is a complete ‘insert expletive’) - it’s useful to get help processing the huge emotions and dealing with the shock and trauma.
Fingers crossed for BBMP.

Another one hoping for BBMP. Sending calm and positive thoughts.

@WorryMcGee I’m sorry you feel so low. I don’t share a bed with my husband either but more because I get so irrationally angry if my already rubbish sleep is disturbed. I hope it’s only temporary but worry it might be hard to get back from here.

I had Macmillan counselling and got some useful insights but could really have done with something more spaced out and longer term. I feel like I have a whole new set of challenges now compared to 6 weeks ago.

More positively, I have been for a run and it’s a very beautiful morning here. Last time i tried to run I was just miserable because I was so unfit. Today I decided to embrace my unfitness and just aim for short intervals and that felt better. Lovely to be outside in the sun and peace and quiet.

Morning all. I used to be a regular on these threads a couple of years ago when I was “toofaroutallmylife”. @MrsPnut paged me on another thread because I’d had vulval melanoma and I popped into this one.

Waving at @LudoBagman as a fellow melanoma patient - there aren’t usually many of us on these threads so I thought I’d say hello in solidarity. Haven’t read back to read your story, but if you have any questions please let me know

Morning All

I’m 3 weeks into chemo and today I’m a bit tingly. I’m sure it’s all normal and I don’t think I need to ring the out of hours number for the unit. Does this sound normal? My hair is looking like a rusty Brillo pad too…reckon it’s on borrowed time - booked the appointment to pick up my wig on Tuesday.

@LemonDrizzle10 I think when you're chemo you can expect anything & everything to be a potential side effect! You must call the team if you have a temperature or other signs of a potential infection. Having said that, when I had a slight temperature a couple of times I took paracetamol & waited to see if it went away, which it always did, as I really didn't want them telling me to go to hospital unless I absolutely needed it.

@MrsPnut Hello 👋 Yes, the thread will absorb scanxiety but if only there was a way to stop it in the first place. Did you get anywhere with the extravasation case? I remember it because it was so awful you had to experience it on top of everything else & any chemo nurse should always be on look out for it.

@LemonDrizzle10 absolutely its a side effect. Ive just finished three months and five days post Im still getting tingles that do go away. Ive also got a very dry mouth in bed. Thats new for me. When you next go mention it to the nurses. I hope you like your wig. Ive an appointment for one in two weeks but Im still weighing up whether its worth it for me. Its alot of money and Im doing fine with hats. Ill decide last minute.

@EachandEveryone @HauntedDishcloth
thanks so much for the responses and the reassurance they bring. I did a temperature check and a covid test just in case. I don’t want to go to A & E unless I absolutely have to!
I had an online chat with a MacMillan nurse just before I got your messages - she’s erred on the side of caution and told me to call the out of hours chemo number so I’ve just done that.

I chose a wig during Feb half term when my friend came to visit- just in case I needed it. It looked exactly the same as my usual hair (before it’s recent rapid decline towards a rusty Brillo pad) - I’m mostly doing it for DD’s sake - I want to look my normal self for her. The wig has got darker roots and looks better than my real hair. The £140 voucher from the hospital will pay half the cost.

17 year old dd has just successfully flushed and redressed my PICC line for the first time. So proud of her for stepping up, bless her she was so worried about hurting me.

@HauntedDishcloth My letter of claim went in at the end of February and so they have until the end of June to respond. The wheels move very slowly.

In true unluckiest patient style, I appear to be allergic to the contrast dye. I have a hot, sore rash on my legs and thighs. One part looks like cellulitis but it is on both legs so much more likely to be a reaction. I'm taking fluoxacillin just in case and also antihistamines, it's hard not to scratch it though.

Did the hospital give you supplies for the dressing and flush? I wish thry had done that for me it feels odd having a week off from having the dressing changed.

@MrsPnut it isn’t blue dye is it? That would confirm BBMP. Hope it settles quickly.

@bringonyourwreckingball that’s amazing of your DD! What a star. I am surprised the chemo team expected you to find a DIY solution.

I launched my boat today, or rather the boatyard did, while I had my hands over my eyes. I came home with mixed feelings. On the one hand she is in the water for the summer and I look forward to some happy times. On the other hand I am so much weaker than I was in September when I started chemotherapy. I can barely lift anything, I can’t climb up without a ladder, I am feeble and useless and heavy. It honestly doesn’t matter as I can still go aboard and do repairs and renovations while I am getting stronger but it makes me sad. This is what old age will feel like, if I ever get there! It is disheartening especially as I did all the work to get fit two years ago and here I am again back to square one. I just hope and pray I won’t need to go through all this again in future.

To cheer myself up I have a stash of chocolate and I am taking my SIL to see Fisherman’s Friends the Musical tonight as DH is away. Happy Easter to you all
Top x

Just raising my head again to see if anyone has been through operation/ any chemo etc as a single parent? The soon to be ex has taken a job that'll allow him to bugger off into the sunset so I'm starting to worry about childcare/school runs etc.
Thanks for any pointers

I haven’t a clue could you reach out to your health visitor see if they have any advice. And the school. How old are they? I don’t envy you two young women in my group have three year olds on their own I just don’t know how they do it. Mind you, the affects might not be as bad as you think. I know mums that take the earlier chemo slots so they can go to pick ups. Any offer of help take it. Do you know your chemo plan yet?

@TopOfTheCliff they gave me the option of having the district nurse but I would have had no control over what day or time - I’m already struggling to fit everything in particularly as exH has been as much use as a chocolate fireguard. @EachandEveryone the team who fitted the PICC gave me a bag of supplies and I’ll pick some more up when I’m next in

@LarryStylinson I am not a single parent, but, I was surprised at how little assistance I needed. I had major surgery but was well enough to swan off to Spain 4 weeks later managed just fine. Do you know what day your chemo will be on? Mine was a Thursday, I’d be fine alone Friday, feel pretty rough on the weekend (watching films, eating lazy junk food, crafting, we did a lot of that on those weekends) and I only really needed help on the Monday. By Tuesday I was well enough to do the school runs myself. Possibly worth asking the school, or if you have a class WhatsApp you could ask if anyone near by would mind picking up yours too and returning them after school? Depends on how many/how old your kids are I guess.