Cancer Support Thread 94 - Sweetness and light - the two noblest of things.

[LemonDrizzle10]

@tilllly and Daisy.

@TopOfTheCliff
Bloody hell! I'm open mouthed about your advice Top. My oncology/chemo unit at my (rather shit) hospital didn't say any of this stuff. I never had a takeaway because I couldn't face it but I was emptying the litter tray and cleaning the toilets while I was doing chemo. I was never given any of this advice at my pre chemo talk and it wasn't in the handbook either. After today's talk with a GP (who was shocked that no one has looked into my stomach pain for two years despite CT radiology suggesting it last year) I don't think that I can trust my local hospital to look after me can I?

@MothralovesGojira Did you tell your oncologist you had cats? I think she only mentioned the litter tray because I asked if I could be near my cats after chemo and she said yes but someone else will have to clean the trays. Tbh I think I'm still gonna clean them, they are indoor cats anyway and if I mask up, use gloves and clean my hands after I should be ok.... I hope.

@catmomof3 I got a puppy during chemo. I bought a big box of disposable gloves to clear up after the inevitable accidents. Just need to be careful.
I wore a mask in public indoor places.
One of my friends caught covid during her chemo and ended up in hospital, she was in school assemblies and all sorts of places. Not worth the risk in my opinion.

@LemonDrizzle10 Oh I agree. I think you need to use common sense and some things are not worth the risk. I'm already scared about catching a cold, I usually get by using the sudafed nasal spray but idk if you can use that during chemo. I'd have to ask.

@catmomof3
I didn't see an actual oncologist until after I started chemo. I had two cycles before I actually saw anyone that wasn't a nurse. Yes, they did know that I had a cat but no advice was given. I got sepsis after cycle 3 and ended up in A&E but was sent home with oral antibiotics because the hospital was full and they had no beds so couldn't do intravenous antibiotics.
There was a large amount of what I would describe as 'undercare' as everything is so disorganised. I only had three days notice of chemo starting and it was very stressful. I do not wish to repeat the process as this is the only hospital available and there's no choice.

@MothralovesGojira Omg I' so sorry you've had such a hard time with your care, and to send you home with sepsis I'm actually speechless. I also cannot believe you didn't meet your oncologist before you started your treatment, how did you sign the consent forms? Did anyone go over all the side effects or was you just thrown into it? I feel angry they treated you like that especially when you're already in a vulnerable state. (((Hugs)))💜

@KentishMama a but if good news for a change - that’s fab!
@Enigma52 glad your feeling well enough to enjoy your med break 😀
@catmomof3 glad you know your treatment plan now. Sedation is pretty much like a ga tbh. Bloods - this is where the picc line is amazing. Takeaways? No one ever told me about this. I’ll be honest during both chemo and radiotherapy treatments I didn’t do anything different in my life at all including picking up dog poo. I did get Covid once and I’m 100% sure I got it in the hospital and that was wearing a mask. You must do absolutely what you feel is right of course - me I just made sure my hands were always thoroughly washed.

Wedding booked for 31st May btw 🥰

Weddings bells for our @Whatevershallidowithmylife! So exciting!

I had chemo during the second big COVID wave, ie September to December 2020. I was definitely quite careful - masking up in public, poor little DS had to shower and get changed after school every day before cuddling me so he didn't expose me to school germs. However, I took some calculated risks, e.g. a few nice meals out, a few high quality takeaways, some meetings with friends. You can't hide away for months on end, so it's just about being a bit mindful about what is worth it, and what isn't. Don't stop living.

@catmomof3 Sudafed is fine during chemo. Been there, done that. But if you happen to lose all your hair, be prepared for a drippy nose. Turns out the hair inside your nose serves an important purpose 😂

@KentishMama Yes, the drippy nose thing was sooooo annoying.

I also lived a fairly normal life through chemo, so far as my energy levels allowed. It's a shitty time and I wasn't interested in making it shittier by denying myself small pleasures like coffee and cake with friends when I felt well enough.

One thing I didn't do was go into the school yard. I had friends meet me a short distance away and walk my daughter in, and I picked her up from the back door at the end of the day.

Yes, schools are just too full of germs. And the extra showers etc also didn't hurt my DS... He's never been as clean again since!

Wahoo! Not long now @Whatevershallidowithmylife
How are you feeling about it?

I have my pre chemo assessment tomorrow (anyone know what happens during that) and I start chemo at 8:30 next Friday. I'm glad it's moving fast but I thought I would start the week after. I am very nervous now. My brother is gonna shave my hair next Saturday so I don't panic when large chunks start coming out.

@catmomof3 They will most likely check your blood pressure, possibly also weight and height to get the dosage right. Possibly a blood test. They'll hopefully talk you through what to expect and give you the chance to ask questions. Is it at the chemo unit? Can you ring them and ask so you know what to expect?

It was about 6 weeks in before I started to lose my hair enough to shave it off, though different chemos give different timings for their side effects. Just saying that you might not need the clippers so soon as this weekend x

@SewingBees More blood? They just took a full blood count on Weds after I met the oncologist 🤦🏻‍♀️🤣 It's in the chemo unit so I might call back as I was a bit shocked that they called so soon. I was told I might have to wait a few weeks to start so I was like OH when she told me Friday.

My vets have been great as my big boy Zeus was due to have his booster Friday and they've moved it to Thurs when I explained. And I'll spend this week getting the house in order so I don't have much to worry about come Friday.

@Enigma52 rather calm actually which is not like me at all. Ordered a few dresses to try but will book in a shopping trip with my sister once I’ve narrowed down the choice (between steroid weight gain and hair still growing in and picc line it’s not going to be what I’d like but hey ho). Still not told a select few till we work out exactly how it’s going to go for numbers etc.
@catmomof3 I was a full two weeks before my hair started coming out, don’t rush into shaving it - I did it two stages by getting it cut short first. You’ll have to get blood the day before every chemo and then the cannula for the chemo which is why I got the picc line. See how you get on though.

@Whatevershallidowithmylife They said I'll have blood 2 days before chemo, I'm just hoping because they just took my bloods the other day they won't need any more till my 2nd week. I've already said no to a picc unless my veins collapse.

@Whatevershallidowithmylife
Oh so pleased for you! I hope that it's everything you wish for.

@catmomof3
I saw someone four weeks before chemo started who DP & I presumed was an oncologist but they were an 'assistant' apparently. She gave me a stack of papers detailing side effects and gave me the consent forms which I duly signed. It was really bizarre because she didn't really answer any questions and sat in silence just looking at us. This was my first contact with oncology so I didn't know any better. As it was my consent forms were lost and the chemo unit didn't realise until after I had the first cannula in for my first treatment and I was receiving my first lot of drugs. Just so fucking awful. I had a 'named' oncologist who I never saw and saw a different doctor every time. This is why I can not face treatment again. I really can't do it again and there is no where else to go.

My manager wants me to go sick. I can sort of see where she's coming from as it's really busy work and she needs staff who are on the ball. I worked all day yesterday and it was very busy but I had a dizzy spell mid afternoon so had to have a sit down. I also spent the day before doing some work for her at home so I don't know what she wants really. She's sympathetic but I don't think that she really wants me there if I can't be 'relied' upon 100% which makes me feel quite shit.
On top of that I'm feeling really ill with my stomach. I've now lost most of my appetite, feel nauseous a lot of the time, my stomach is so bloated that my trousers are getting tight and I'm still in pain under my ribs. GP says I have to wait two weeks for Naproxen to leave my system before I can have my blood tests done because my last CT scan showed no issues in my abdomen. GP is cross that oncology won't see me until I'm 'released' to their care from the breast cancer hospital and can't believe that this problem started after cancer 1 and no one has looked at it let alone investigated it. There we go - rant over!
I'm now off to work - again.

@MothralovesGojira that is shit of your employer. And possibly illegal. You have a disability and they need to make reasonable adjustments for you.

If you go sick, do you get sick pay?

I got my chemo schedule today along with oncologist appointments, I also booked all my blood tests. They confirmed my mum can stay with me while they do the cannula which is great but tbh she's kind driving me crazy. She keeps trying to force wigs on to me even though I said I don't really want one atm and I'm happy wearing hats. She then got upset at me when I told her to stop going on about it 🙄 I don't think I'm performing to her expectations, she thinks I should be walking around feeling sad because she's sad. Like get a grip 🤦🏻‍♀️ I love my mum but in all honesty she's driving me crazy. Then she had the cheek to ask if I would give my dad petrol money despite her saying they would drive me to appointments etc and to not worry. I had planned to get something for him at the end of my treatment to say thanks and give him some money now and again to treat himself to a pint at the pub.

@catmomof3 I was very naughty and bought a litter robot4 from John Lewis. £750 which I had in savings otherwise I would've done interest free. Its a game changer. I cant go back now. I empty the tray underneath once a week. I have three cats using it. I still have a manual one as they like to sleep with me but they hardly use it.

im in a funny position really. I had eye surgery for a semi detached retina on Friday and now Im posturing, looking at the floor. Its not easy and Im not quite sure how long I have to do it for.

its grown. I can feel it has. My oncology appointment is on Wednesday. Who is it on here who has secondries in groin lymph nodes? I wonder how they are getting on. Ive seen the letter he sent after my last appointment and it says if it has grown again I will be on FLOX and hopefully immunotherapy. Does anyone know what flox is? Last time i was on Paclitaxel and carboplatin.

i long for a holiday. I need some good weather and good books and endless food. Where is this place I wonder? Im hoping to do a quick one in June. If im allowed to fly (gas in eye)

@EachandEveryone I've just googled the litter robot 4 and it looks amazing, I didn't know such things existed! I hadn't really thought about the litter tray being an issue during chemo and carried on cleaning it as usual.

I hope your recovery from surgery goes well, the face down posturing does not sound fun and I hope you don't have to do it for too much longer. All the best for your appointment tomorrow, I hope you are given a clear plan and can get away for a little holiday.

@EachandEveryone its me with the secondary in groin. Yes mine has grown a lot- back at oncology on Friday. Immunotherapy was upsetting my kidneys so had a few weeks of steroids so don’t know what they’ll say …….