Cancer Support Thread 95 - No googling allowed 😊

[LemonDrizzle10]

New thread - we need to stick together!

Dancing People vary on what they do but it is best to be careful as you are high risk for infections. I did not get any infections - measured temp twice a day on digital thermometer and was told to call chemo line immediately if temp went high.

I didn't work but some people manage it but do what is best for your health, they normally don't like people doing things like teaching, front line nursing where they is higher infection risk. Ask work for adjustments or get signed off if you need to. If money is an issue then Macmillan do financial advice and can help you get ESA and / or PIP if needed. I got ESA and its not that much but it makes a difference, neither are means tested.

I went away during chemo - was arranged last minute when my chemo got cancelled due to neuropathy - and was told to stay in UK and be within an hour of any hospital (with an A&E or similar). I went to Wales then and stayed in a couple of places, one was a room in a pub (given to me by the SomethingToLookForwardTo charity) and had a meal in the restaurant but did have a table away from people and used handgel before eating / drinking. Went on a boat trip to see puffins, again told boat company, who put me on an emptyish boat and was outside, wandered round island with puffins, went to beach, was at Easter and not busy and stayed at a small farm B&B with 4 rooms and again ate in restaurant but that was just us and one other family - again took handgel. Generally outdoor things are less risky and handgel before eating / drinking helps and avoid crowded places if you can. Some people do go to all kinds of things, its whatever you feel comfortable with but I was very keen not to get an infection which can land you in hospital for a few days. They told me not to swim in chemo. Personally I would avoid a crowded concert - something like a picnic concert outside spaced out would probably be OK. Some people do go to things like that but they do also sometimes get infections.

Thanks @Penguinsa thats very helpful. I’m self employed but work with children so that probably rules out work. I am very risk averse!

@dancingwhilstfacingthemusic

As Penguinsa says, people vary. The nature of my work, and where I live make it very easy to isolate. A public facing role, especially with children, would be more challenging. Being ‘clinically vulnerable’ is another insult cancer treatment heaps upon us. I didn’t go to the theatre or cinema whilst having chemotherapy and avoided public transport. I continued to go to shops and do some socialising. We stayed in hotels and pubs, but mostly ones we knew, so we felt comfortable in the space.

I did test positive for Covid twice while being treated but was completely asymptomatic. Again to echo Penguinsa checking temperature daily is good paractice, lots of handwashing too. The time I felt most vulnerable was in A&E when I was dispatched there one Sunday morning as the oncology team wanted me to get checked out, a false alarm thankfully.

The oncologist I was under was adamant that you mustn’t stop living. I did get a fair amount of contradictory advice from various HCPs and decided to pick the bits I liked best. You just have to KBO till it’s done.

Thanks so much for all the lovely messages wishing me luck for chemo.

I won't lie, I was really nervous. Thankfully everything went really well. My lovely DSis came in to be with me and was so kind. It was very delayed so we came in at 11 but only started at 3 and finished at 8! I had my first dose of IV trastuzumab and then the first of 12 weeks of Paclitaxel. No bad reactions at the time, and since then I've just been a little more tired than usual and everything tastes yucky. I'm so thankful it's not worse. Let's see how it goes over the next few days as it kicks in - and then I go back next Monday for my second Paclitaxel.

Although the nurses reassured me that most people tolerate it well, I had been anxious as my best friend reacted very badly a few years ago.

@londondragonite That's great to hear. Fingers crossed things continued as well as possible.

I've had an interesting clinic. I do need a mastectomy and had gone thinking that we were going for immediate reconstruction (I saw the lead specialist last week as mine was on holiday). My specialist last week left me with the message immediate reconstruction and then chemo.

My usual chap, who is super and I trust, has a preference for going flat ("simple mastectomy"), to minimise the delay for chemo, cut down on any possible complications and then for considering a delayed reconstruction down the line (waiting list is around 18 months for this). I have a few doubts about immediate reconstruction anyway and was considering flat but this has thrown me into confusion as I had thought my pathway was immediate followed by chemo.

Gah. We've got time to think about it and a choice of surgery dates. For now, a small glass of something and food.

I'm not great at keeping up with Mumsnet right now, but wanted to jump in re: cold capping.

I cold capped during 4x EC 4x Paclitaxel biweekly. That's the dose dense regime for breast cancer. I had a huge shed of hair on day 17, and then it settled a bit, but I kept losing hair throughout chemo. I got away with big hairbands to cover up patchiness (recommend Oliver Bonas or Anthropologie) for ages. Towards the end of chemo I had to wear some sort of head covering when I left the house as it was too patchy. I swore by my Eadiechops turban. Check on Instagram. The lady who runs the place is amazing and they are the softest jersey turbans you could buy.

At the end of chemo, I had very little long hair left and cut it all ultra short. But weirdly my hair had already started to grow back, and I was never completely bald thanks to the cold cap.

Definitely recommend cutting hair to bob length before chemo because of matting though.

Hope this helps a bit!

My biopsy results aren't back - I had my MRI today, and have an appointment with the consultant on Saturday morning. Still not sleeping well and scared 😔 I'm finding it really hard to find distractions. I found the lump on 2 August, so it's been a long time to be in this scary limbo.

To add to the fun, I have a gynae MRI and follow up next week. I'm hoping she was just being thorough ...

@BatshitCrazyWoman the waiting is awful. Have they said whether they can chase and hurry your results? Might they be available on Saturday?

I had the biopsy done last Thursday, they seemed sure they would be back by Saturday. The consultant will have the MRI images by then, too, hopefully.

Had my first round of ec-t chemo yesterday and Goserelin injection. I was doing ok and with the cold cap until I had the cyclowhatsit and then I started to feel a bit sick and the hat started to get to me. Then in the 90 min cooldown I felt quite poorly. really sick and headachy.,the nurse gave me anti sickness but quite close to end of that 90 minutes so I don’t know if I felt better because of hat coming off or antisickness kicking in. it’s made me feel so miserable at the idea of 5 more cycles. I know no one likes it but feeling sick is awful. I came home and felt all these horrible weird twinges in back and bladder like when you have cystitis and I’ve still felt low level sick . And the goserelin has left a massive bruise and swelling. I’ve already rung the helpline to check what’s normal and they were reassuring. I just feel so anxious about every twinge being something sinister.

@aodirjjd that sounds worrying sending a hug.

I get my results in about an hour - consultant said 70% likelihood of cancer, so I've 'decided' that means it is. My partner/boyfriend (we don't live together) is coming with me. I have no idea how to feel. And if (when) I get bad news, do we just leave and go about our day? No idea what to do 'after'.

@BatshitCrazyWoman it is one of those surreal moments when you feel like everyone else should stop because your world has just shifted but yes in theory you go about your day!

for me we went home and cried and then I rang and told all my family. They also give you lots of leaflets to read in your own time , I think some people find that helpful straight away and others can’t face it at first . Exhausting day so if that is yours take care of yourself. My cancer nurse rang me the day after to check how I was coping with it and to see if I had any follow up questions so don’t feel if you don’t remember to ask anything you won’t get another chance.

Thinking of you @BatshitCrazyWoman

@aodirjjd this is exactly how I feel the day of EC (I don’t have the injection). I haven’t found anything that makes it better, but for me, I feel better the day after. I am careful to keep on top of the anti-sickness meds for the rest of the week.
I do wonder if the cold cap makes it worse.
Talk to your team and let them know so they can try different drugs next time.
I know this isn’t that helpful, but hopefully the really sick / headachey feeling is just that day / night. Side effects more manageable afterwards.
Also if you are on the same as me, you will have 3 x EC and 3 x docetaxel. My oncologist has said I won’t feel sick on docetaxel (not sure if I believe him though). I have docetaxel a week on Monday, so I’ll let you know if it’s better.

@BatshitCrazyWoman its good that you are taking someone with you as there can be a lot of information that feels very overwhelming. I hope you are doing ok today.
I got my diagnosis on my own, so the first thing I did was ring my husband. It just felt really surreal.

I don't really have family so not many people to tell. An adult DC with a severe learning disability (so will be told Mum's not well as that's all he'll understand) and an adult DC with some mental health challenges who I'm really worried about. Not sure what to do about that actually.

It was confirmed I have cancer, have another appointment next week when they will know the receptors, plus my consultant wants to do a full body scan too. Then either chemo or surgery first depending on the type of cancer. The chemo will be at the London Bridge Hospital (I live on the edge of London and Kent). I can get there easily on public transport but I imagine during chemo that's not advisable? A lot of very expensive Uber trips coming up ...

Really sorry to hear this @BatshitCrazyWoman

As You’ll have read, it’s kind of easier when there is a plan. From what I’ve read, avoiding crowds and indoor spaces on chemo is better.

let’s hope this time next year we are all looking back on a difficult time that we have got through.

Thank you @dancingwhilstfacingthemusic I have a million questions, but apart from knowing I have cancer, I don't have a plan yet 🤷‍♀️ I went to my appointment with my boyfriend, but actually I think I would have been better off on my own. The first thing he said was 'there's been loads of research into breast cancer, so treatment is successful '. I know that's true but when you've just been told you've got cancer that feels very dismissive.

A friend who has been through it recommended the breast cancer book by Liz o’riordan and trisha greenhalgh, which she said was her go-to. I purchased it 2nd hand when I was ready to and it is good. She also recommended Liz o’riordan if I was ready to follow someone on Instagram, which I’ve also found helpful. I’m limiting the internetting I’m doing about it all as some of it is unsettling.

a step at a time. The best advice for me so far from these threads has been that our job is just to get to the appointment and let the professionals take it forward. Just turn up.

I hope you have a chance for some easier moments today.

BatshitCrazyWoman I'm so sorry.
I'm about a week ahead of you so go to get my final results on Tuesday.

I have very mixed feelings. My consultant said if it's all 'fine' then I've got a lumpectomy booked for the 25th then radiotherapy.
If not then I'm looking at chemo before surgery.

So as clear as mud!

I'm very much a glass half empty person so fully prepared to be told the worst on Tuesday.
Though I doubt anything will be worse than my last appointment when they confirmed cancer.

It's like the roller coaster no one wants to be on, and no one hearing you when you're screaming 'I just want to get off!!'

I've only told a select few people at the moment because I can't stand the platitudes and pity faces, I have enough shit to deal with without that

Thank you for the book recommendation @dancingwhilstfacingthemusic

And I'm sorry you are in this horrible club @drivinmecrazy I haven't told many people, as I want more of a plan, but I'm quite a private person, so I won't be splashing it all over Instagram or anything. And I'm not brave, and I'm not a fighter, so fuck off with that stuff too! (Not aimed at you @drivinmecrazy , but other people 🤬)

@BatshitCrazyWoman the people you need around you will emerge and you’ll know who and when to tell. I’m not all over sm with it either but have quietly told the ones I need to know. I have a few friends who have been through it and they’ve been very compassionate. You’ll find your way through.

Well I went to the breast clinic on Friday and the radiographer saw something "small" she said "try not to worry" and took a biopsy. I know they can't say much but I wasn't given any information or reassurance at all really. Just had a second mammogram to confirm the clip was in place then given a card to make a results appointment. Made one for the 12th but I've just had a call to say they booked me into the wrong clinic and changed it for the 24th. That seems a long way away. It's hard I go from thinking it still might be nothing to feeling certain it is or she would have said.

I'm back up to the hospital in a little while to see my consultant and find out what type of cancer I have, and the plan for treatment. Feel a bit sick.

CT PET scan booked for Friday.

Things seem to be moving very fast for you, which is a good thing I'm sure. Sounds like you're in good hands. I'm sure it still all feels a bit surreal. Hope things go well for you later