Cancer Support thread 86 - Stay Positive

[LemonDrizzle10]

New thread as other one nearly full.

@BiopsyWait of course you're very welcome to join, come on in! My biopsy results for ovarian cancer took 5 weeks which included an additional test on my tumour sample to confirm diagnosis. The wait was just awful.

@Mycatispretty you look fabulous! I hear you on dealing with cancer alone. I've been single a long time but have never felt as 'alone' as when attending all my appointments on my own. I am very close to my adult DD and have lovely friends but I try to limit my moaning with them. Sending hugs Xxx

Those two kittens are adorable 😍😍😍😍

i have the runs today and Im sure its chemo related. Its been more
than three times so I rang my nurse up. I was expecting her not to answer but she did. Now instead of getting back into bed with my blanket on for an hour I have to wait for her to speak to the consultant and ring me back. Shes mentioning samples and everything. Its pouring down outside! I did eat half an Easter egg Im sure its related to that.

@AGreatUsername I love Baxter and Digsby. They’re beautiful. Animals bring so much pleasure to our lives. Thanks again for everyone’s kind comments.
@Fantasea yes the waiting room is a very lonely place. I am not relishing the thought of my first mammogram since diagnosis in April and then the two week wait for the results.
I’m having a quiet weekend in as on a limited diet pre colonoscopy on Monday. I’m going to find something to occupy myself on Netflix. I hope everyone has a peaceful and pleasant weekend. Lots of love to you all x

@Fantasea @Mycatispretty i’m finding the being alone particularly hard this week. I had my MRI, started my new chemo regime and had an emergency admission overnight for a blood transfusion. It has been a lot to deal with and I could really have done with being able to rely on someone’s support to process it all. The kids are great and I would be lost without them but they are still kids and it’s not fair to put too much on them. My mum gets too overwhelmed and I end up having to deal with her feelings. My friends are all amazing but the only one I can rely on unconditionally is miles away. I really need to see her but her husband recently started working abroad so weekends are family time. We do have tickets to see Springsteen in June though which is also (hopefully) my last week of my last round of chemo so my current goal is just being well enough for that.

Lots to catch up on the thread. @EachandEveryone I hope your consultant phoneed back and it was nothing to worry about. And @Mycatispretty that was a great photo of you. A looking good course is on my list of things to do.
It must be so difficult to go through this journey alone, especially the waiting part. Keep sharing here as although we aren’t there in person we are in spirit and understanding.

I have a difficult experience to share. I’m the least confrontational person I know - I wish I wasn’t so bloody meek at times. I had my 4th chemo session this week and I went in feeling pretty low and unwell. The chemo wards work in bays of six patients with two nurses overseeing those six patients. All was going fine…there was no chat amongst the patients this time…they were all elderly and one poor lady was having a reaction. My nurse went over to deal with her so the other nurse came to see me. She was going through my meds and the doctor had described a new anti sickness med but had stressed at the appointment not to take it with a previous medication. But what the nurse told me was conflicting this. I just felt so overwhelmed that my eyes watered up. The nurse was so unkind and impatient with me demanding why was I crying and why do I not trust the nurse. She took me to see the computer to show me the notes and then walked off and wouldn’t deal with me. I was shattered by the incident. The other nurse came and finished my treatment but now I’m left with the sinking feeling I’ve got to go back there another 4 times. I get they were busy but the lack of compassion really knocked me. She was right by the way, but she could have dealt with it so differently. Not really looking for advice but just understanding really. I know I have to go back but the whole thing is just bloody awful anyway and I could do without this extra shit.

@Whattodotomorrow you may not necessarily have that nurse each of your next four times if her shift rota changes around. That being said, being your own best advocate and speaking up is important throughout your cancer care, even though you really shouldn't have to. Its your body and you are the one who has to put up with any adverse effects. You were right to raise the issue (and good for you for putting your hand up!), but the nurse should have responded more compassionately. I think a lot of times the medical staff forget that at the start cancer patients don't deal with all this on a day in day out basis and its all overwhelming, not obvious, and with limited time, communications get lost. You did the right thing here, dont be upset.

I cried all over the nurse yesterday @Whattodotomorrow - fortunately she was a lot more empathetic. I do hope that the shift patterns change so that you don't get Ms Grumpy again, but whatever, you're right to question and keep questioning until your satisfied.

Yet another infection, and my just about healed wound (from lumpectomy in September) was cut open for a swab and cleaning by Dr. Sadist yesterday. I hadn't been expecting it - antibiotics was my goal - so I felt drained (literally!) by the time I got home. DH hadn't come with me as I'd said it was a waste of his time.

I've had enough of this stupid game - although I am assured that the op and radiotherapy will have done the job, I am hating the delay in healing which is apparently down to the radiotherapy. Six months and counting!

Sorry for the moan - I know I'm being unreasonable, but my quick appointment to whip it out and carry on with my life is turning into a marathon I hadn't expected.

I hope that everyone has a gentle weekend, and send love to everyone. Keep cycling Top - you're an inspiration, and I very much need one at the moment!

Your cats are beautiful!

Thank you @HerbalRefreshment and @ajandjjmum I really hope I don’t see her again or that she’s spread it around that I’m a difficult person - I really wasn’t. I think she was just impatient and wanted my chair back quickly to give to the next person. It was the last thing I needed on top of a difficult day.

Hope everyone is ok. I’m mighty impressed with Top’s cycling effort…not sure I could even do that before cancer hit! I tend to go at toddler pace now!

@ajandjjmum I would definitely have cried all over the nurse too...I'm so sorry you're having such a frustratingly rubbish time. Your initial plan to have it all whipped out, a bit of radiation and then get on with life is exactly the way I've been thinking about my situation so I can really understand why you're so fed up. I have everything crossed for you that all will now heal as it should.

Oh @ajandjjmum I feel for you having the wound sliced open again. It seems like sliding backwards when you are struggling to move ahead. This is all a giant game of snakes and ladders sometimes.
@Whattodotomorrow it is such a shame you weren’t looked after. I can imagine the nurse felt you were challenging her and became hostile and defensive when you were simply checking out what the doctor had said to you. Have you got a specialist nurse you could discuss it with? I think I would consider phoning the unit to ask that I wasn’t booked with that nurse in future. Just say she upset you and you don’t want to be treated by her. Your feelings are valid!

My trainer has us on a healthy eating challenge this month. Every day one meal must have at least four colours of food. I’m off to stock up with colourful fruit and veg. She is such a positive person she makes me hopeful that life will be better eventually. Also she is forever telling me to do less! I love her.
I managed to organise a sports club dinner last night. It was great because I had nothing to do except supervise the volunteers. I even got my first random short hair compliment too. I am so enjoying my month off treatment. A taste of the future on the other side of all this crap.
Sending strength to those who need it.
Top

@Whattodotomorrow so sorry you were treated like this. Agree with @TopOfTheCliff please contact your specialist nurse…. You can ask not to have that nurse again. I did see a thread on here recently where it sounded like someone had been given the wrong chemo drugs( not hers) and had to follow up.
I was sent home after chemo without some of the drugs I should have had…it was only via a local breast cancer fb group I realised.. My specialist nurse was v keen to hear what happened so they could put things right.

@Mycatispretty thinking of you today. Hope the vile purging has worked well and the colonoscopy is swift and painless. Well we can hope anyway! Xx

Sending good wishes to everyone - I've been lurking for a while, and there's lots to catch up on.

I need a quick moan today as I'm feeling a bit wobbly. I finally had my long-delayed RT planning scan. I'd been told that I'd get my actual treatment schedule today, but at the appointment they said that was wrong, and because my treatment is more complex, they couldn't confirm it yet. I'm not good with uncertainty (and also want to put some work things and fun stuff into my diary) and had been really looking forward to knowing what was happening when. I'm also feeling upset because they seem to have messed up one of my tattoo markers. I think the radiographer's hand must have slipped as instead of a dot, I've got a line about 5mm long with a dot either end. (He did say after he'd done them, 'one of them has come out more as a line' which I guess was a kind of apology). It's the one in my cleavage, so I will see it all the time and it looks dreadful. I don't mind my scars, and I am zen about my bald head, but I really hate how this looks. Fed up and a bit teary just now.

Im on my way for my last chemo. I cant believe how quickly the three months has passed. I have bright red lipstick on to cheer me up. Im under no illusions there still will be along way to go.

my sister and wee nephew are comin* tonight. I havent seen family since this all started. I hope they arent too shocked.

Well done on getting to your last chemo @EachandEveryone and I hope you can enjoy your family visit. I know it’s hard when you look so different. I’m very sensitive to the double take that people do…

I know. They are in bed now so I can watch Succession in peace😃.

Im dissappointed my Potassium was low again. Only because I asked if it was up after last time when the6 urgently got me in to take the tablets. I cant help but wonder what happens to people who dont know to ask these questions? As it turns out my Pottasium is at the low end and the got me a prescription and Im really worried now as to why it keeps dropping, do you think its just the chemo?

i cant believe today was the last one. I suppose its best to think about it as the end of the first part of my journey and the next chapter will be planned in about ten days after my scan.

i hope you all have a good week and its nice and dry. We may go to London Zoo tomorrow. Although I dont agree with them but it will be noce to be outdoors.

Well done @EachandEveryone on reaching the end of chemo. It’s an important milestone…and I’m mighty impressed you’re able to contemplate a trip to the zoo after chemo! Good for you!

Hope everyone else is doing ok. I’ve got the frustrating task tomorrow of trying to source another syringe for my bloods injection as one of them was faulty. I’ll be mighty pissed off if it involves a 2 and half hour round trip!

Three months it flew by. If i stick to my pattern im usually ok the next day and i get worse after that. I just need to keep myself busy until my appointment otherwise I’ll be dwelling on it. The staff were so busy I just went out of there quietly. They did say if im to have the longline out I will be back there next week so we will ser.

I had issues with hair coming back after chemo uneven - well done equivalent of cold capping and saved 40% or so and first few months great then the underneath started growing back super curly pushing the straight hair out. I took photos of what very short would be like and what long was like and decided on cutting it inbetween two. That's definitely better for hair long term evening out but I don't like it short so have reverted to beanie type woollen hats. I am not normally a hat person but hated doing my hair all the time and looking in the mirror and wanting to cry and now I love the hats. I want my old hair back but that will be another year or so I guess. I have seen some people with very short stylish hair but wouldn't suit me. I guess it depends on what suits you and what you feel best about.

Have a CT for DIEP on Wednesday. Think its about a 40 week wait after that. Had a wonderful trip to the Azores to a spa hotel and to Porto on way back, that was amazing.

Today is steroid crash day for me! Little bit anxious about what’s ahead.
I’ve still got my very stylish blue nipple surround from my op, does anyone know how long this will take to disappear or will part of me now be permanently Smurf like?

@EachandEveryone congratulations on finishing your chemo! I’ve heard people talking about Succession but I haven’t got Sky. Is it as good as everyone says?
@Fantasea thanks for your words of support re dealing with cancer solo. It can be lonely but at least we can go to bed/ eat / watch what we want etc
@Silkierabbit I'm glad you had a lovely holiday. Would you recommend Porto?
@TopOfTheCliff my colonoscopy was completely different than the first one I had 2 years ago. I felt no pain or discomfort. The staff were absolutely wonderful. They discovered a polyp which was removed. I’m so glad I went through with the procedure because now I feel reassured. It’s a year since I was diagnosed today. I’m dreading my mammogram at the end of April already. Every test brings anxiety and so far this month I’ve had 2 bone scans and a colonoscopy. I’m not complaining though because mostly I’ve had very good care. Love to everyone on here

oh by the way, when I applied my new make up at home (after look good feel better course) my mother said oooooh you look a lot better. I think it’s because I used my scary magnifying mirror

@Whattodotomorrow do you mean the filgrastim injections? I damaged one of them in one of my chemo rounds and the chemo nurses said it would be fine to just take 4 instead of 5. I think they only come in boxes of 5 so it wasn’t straight forward to just give me one more

I found Succession hard going. It’s good but I struggled with the fact there are no likeable characters!

I have my CT results on the 13th and am super paranoid about the fact it’s in person. I also don’t want to know my CA125 levels so am going to “forget” to get bloods done in time so I don’t have to hear them.

My hair is getting to a silly stage now, growing over my ears and looking daft but still too short to style. I wonder if people get it cut into a more stylish style at this point, but then how does it grow out?? I want my bob back!

(I also have the worlds most powerful cowslick hence the side of my hairline that just sticks straight up!)