Cancer Support thread 86 - Stay Positive

[LemonDrizzle10]

New thread as other one nearly full.

Back from scan. My ovaries look fine apparently, so that’s one worry less.

I don 't know which would be best for the outcome because I had / am having everything they put in my original treatment plan:

4 types of chemo
2 types of immunotherapies
surgery
radiotherapy

But we haven't got the same cancer and there literally seem to be thousands if not millions of cancers... even just breast cancer is actually a load of completely different diseases with different causes, different treatments and different prognoses.

But yes, I agree with you about not deciding yet if you don't have to. If radio would be after chemo and you still have 2 months chemo then you are thinking way ahead. I imagine there will be a recovery time between them anyway, in addition to the 2 months.

@EachandEveryone I think @SummerCycling makes a really good point about waiting till nearer the time to decide about radiotherapy. I was so distraught after surgery at the end of chemotherapy when I heard I would need a further course of oral chemotherapy. Having a three month wait with radiotherapy and some recovery time meant I was able to contemplate the prospect more rationally when I had to start it. You are very run down and low due to chemotherapy so it is hard to imagine how you will cope but things will improve. One step at a time!
I’ve just run a club event with eighteen under sevens running around yelling. My head is spinning! My energy levels are still only about 30-40 percent of normal. Off to bed now.
Top

I think he wanted me in the system which is why it was best for me to sign the consent today. He said theres a huge backlog but I didnt have to decide which radiotherapy to have until after chemo scans.

Hope the results aren't too much longer Mycat I chickened out of first mammo as my nerves weren't up to it and also was on healthy breast and normally doesn't pick up early lobular.

With the energy I found exercise was hard at first but the more I did the more energy came back. I go swimming and that really has helped me mentally and physically. Though our bodies have been through a lot so its normal to be tired. I also take a multivitamin which helps a bit. I am glad you have friends, it's hard to know how much to tell friends. I found that only cancer people got cancer.

I had an odd experience this evening. I went to a friend’s house for supper and when I arrived in the garden another guest fled into the house. The hostess said she was upset to see me as they had been talking about me before I arrived and she knew I had had cancer twice. It turns out she is also being treated for BC. I was a bit taken aback that my mere presence triggered her distress. Eventually she came out and had a teary conversation with me and talked about her treatment. God knows what they had told her about me! I hope I convinced her I am not at death’s door.
This Capecitabine is hard work. I’m half asleep most of the time. Tomorrow I get bloods done to check I am good to go for round two.

That sounds difficult for you both Top she must be terrified and not sure who thought it would be helpful to point out you can have it a second time. But sounds like you handled it well. Sorry the meds are making you sleepy.

Been swimming and planting lavender in our garden today. Also got some new shoes but Floof is disappointed he is too big for the box, only half of him can get in. He's not a very intelligent creature and keeps trying. Dd has brought him a bigger box. I showed him my shoes on and said do you like them Floof and he looked me up and down and went brrruup so cat approved.

@TopOfTheCliff that sounds a very strange situation to be in and I hope you weren't too troubled by it.

Just about to set off for my first radiotherapy session, a little nervous but I'm pretty sure it won't be too much of a muchness and I'll soon be in a routine. Got an appointment with my consultant first so will need to juggle enema and water drinking round that - just hoping it all goes smoothly!

@TopOfTheCliff - managing other people's feelings is hard. It sounds like you were very generous and supportive to the other guest, but I hope it didn't take too much of an emotional toll. I bumped into someone I used to know quite well (primary school mum friend from a few years ago) but haven't seen for ages yesterday in the supermarket. She had heard on the grapevine about my cancer and was very lovely but also a bit too keen to hear I was 'on the mend' (which I don't feel I am, really). It was only after I'd said goodbye that I remembered that her DM had died quite young of BC, and I felt really upset for having forgotten that when we were chatting. Illogical, but I'm so useless and fragile at the moment. I spent the rest of my shop trying to avoid her and came home without lots of stuff in consequence. I am an idiot.

@ClashCityRocker - hope all goes well today and you manage the tricky logistics.

@Silkierabbit - my cat is scared of unfamiliar shoes. My DDs got their crocs out yesterday for the first time this year, for lunch in the garden, and he ran away and hid.

RT 14 today, and A-levels and GCSEs underway in our house. All a bit much, all in all.

Goodness Dotty - that is a busy house - I struggled when it was just the exam bit! I suppose at least cancer teaches us all what the priorities are in life - I may have stressed a little less over the exams if I had the cancer experience beforehand!

Hope you're ok with the RT, and at least the end is in site.

That was tough for you Top, but also for the other lady who has been diagnosed. All of us have the ups and downs, it's just that you always seem so 'giving' to others, so it seems a bit rotten that you were landed with that response. I bet your chat helped the other lady no end though! Hope the bloods are ok today.

Im up and ready for my 5th round of chemo. I did some silly shopping at Space Nk at 4am. A little bit of money in my account burns a hole in my pocket, as my mother says. I needed some bright lipstick and glosses though. Shallow, I know but I feel so much better with a red lippy on.

I think we all need little treats at the moment - and to be fair, Space NK is normally full of them! Be silly to miss the offers. Hope the chemo goes well.

I can’t complain it’s a lovely unit and I’m a nosy dii oh d so it suits me listening In. There is a nurse here throwing her weight about she’s clearly more senior than me as she’s very stern with everyone and I would be nervous looking after her!

@dotty2 I hadn’t realised that was what happened yesterday. You are right I had to try to reassure the lady who was obviously upset.
I went for my blood test, up early and down there with 15 minutes to spare. 5 minutes to go I realised I had forgotten the form so rushed home and back in 7 minutes. I was so annoyed with myself. I used to be a senior partner in a surgery and now I’m a lame old lady who can’t even remember a piece of paper. I cried a lot which is ridiculous. But I felt better afterwards. It helps to let out the emotions.
Today I am on a tidying spree as my DC are visiting soon but it is unsettling DH as it is his crap I am tidying!! Tough mate - it needs doing!

And actually I take that back because too much knowledge and all of that I’m sure I’ve become more assertive these past few months

Good luck getting through radio, A levels and gcses Dotty Certainly going to earn your summer there. This time last year had chemo, gcses with a DD who changed schools mid gcses and was taking 14 subjects, 4 self taught and school kicking ds out at the same time as he was distressed and telling me I needed to teach him on chemo and steroids and they called police x 3 when they lost him. That's the start of how he ended up sectioned. Its also how we got Floof. DD did brilliantly and has A level mocks today. Hope yours go more smoothly than ours did.

OK so any reservation I had about taking letrozole have just disappeared after today's oncology appt. I got my genomic Prosigna tests back and to everyone's surprise, my tumour is classified as Luminal B and the risk of distant recurrence even with letrozole has come back as intermediate/high rather than the Luminal A/low recurrence risk that my consultant (and I) were expecting. He's asked me to consider a course of chemotherapy (4x TC) which he feels would reduce the risk of recurrence from 15% to less than 10%, although he's said it's really hard to quantify. So clearly it's a no-brainer that I have to take the letrozole endocrine therapy...but chemo, and all that involves for an incremental 5% risk reduction? I just don't know...but if I decide against and get a recurrence, I'm not sure how I'll be able to look my daughters straight in the face. This was not how today was supposed to go.

Wow - that's a big decision Atreus - not the day you wanted. I started taking Letrozole around the beginning of the year and so far haven't noticed any side effects (if that helps at all?!) Just the normal getting older aches and pains.

Thanks everyone - first exams today went OK apparently, so hope everyone will feel a bit calmer now they're underway. @Silkierabbit - I can't imagine how tough that all was/is.

@TopOfTheCliff - I don't think forgetting one form makes you a lame old lady. I used to do things like that when I was under pressure even before cancer. But I understand your frustration.

@Atreus It must be a shock to have gone from low risk to intermediate/high. It's a completely personal decision and I'm not telling you what to do. But having been through chemo, I would do it again in a heartbeat if doing so would give me another 5% reduction in risk of recurrence. But of course that might not be the right answer for you. Sending calming thoughts and all best wishes.

@dotty2 glad your DC has the first exam out of the way, hopefully it'll be less stressful when she's in the swing of them.

@Altreus sorry to hear you had some unexpected news and it's given you a big decision to make.

First day of treatment was a doddle really - just radiotherapy, first chemo Wednesday. I think it's usually week three when things go downhill a bit so I'm just trying to make the most of feeling well whilst still trying to take it a little easy!

I had a similar situation @Atreus - I went for a second opinion to the Royal Marsden expecting to be told no further treatment was recommended, to be told that they’d found something my first hospital had missed, though even with that the benefits of chemo and radiotherapy weren’t huge. I agonised for ages about it. I did turn radiotherapy down still as the benefit only seemed to be 2% but had the chemo as I figured I could try to mitigate the negative effects of chemo but I wasn’t sure I’d have psychological peace around the risk of the cancer coming back if I didn’t have it. I still don’t have psychological peace, so maybe it didn’t make any difference!

I’ve just had a week in the sun with my DD, which has been great, I didn’t think about cancer much, but now I’m back home and she’s at uni all the old anxiety has returned. I messaged the surgery this morning to make an appointment with the GP to talk about my blood test results, then at 5.30pm I got a message saying that the doctor would call me sometime tomorrow morning, but I have work things I can’t move, so I don’t know how that’s going to work and whether they’ll pick up my message about it in time. I really want a face-to-face appointment as I struggle to communicate everything over the phone but my surgery rarely offers them, maybe why they didn’t get a very good rating on their latest inspection.

Thanks Dotty Glad it went well.

I was 6% benefit from chemo and went ahead. I got them to do the Prosigna test and it came back chemo highly recommended. But it's a close call as its a lot to go through. Maybe ask oncologist if it was them, mine said she would do chemo.

@Atreus I think my benefit of chemo was around 3%. The main question I asked myself was how I would feel if I turned it down and then had a recurrence or metastatic disease. Would I be beating myself up for not having had chemo when it was on offer? I agonized over that question for a while, and then went for it. You need to find the right answer for YOU.

Hi, just thought I’d drop in to say a quick hello…just had another round of chemo and my face is a mass of sore painful spots. I feel like a very unfortunate teenager!

@Atreus I can imagine it must have been very disappointing to hear that Chemo might be needed. Having done 6 rounds with 2 more to go, it is hard but doable. However, as others have said you do what is right at the time.

@ClashCityRocker Im glad today’s treatment went well for you and good luck for Weds.

@SierraSapphire how great to have had a week away! I’m most envious! As I’m wallowing in chemo fog I’m amusing myself by researching potential holidays for the Autumn when hopefully this nightmare will be close to finishing active treatment. I hope you manage to speak to the doctor tomorrow. My surgery is the same regarding face to face appointments - and it has just been listed as in the top 5% in the country!

I hope everyone else is doing ok whether going through treatment, waiting for scans and those who are out the other side.

I posted a few pages back. I usually read all your posts in quiet admiration

I’m in the limbo stage - had biopsies last week. They think I have a peritoneal tumour (rare and diffuse), so they think it’ll be chemo followed by surgery.

I am definitely a bit scared of chemo - although will do my best to damn well cope with it.

Does anyone have tips that helped them cope? Just anything really that made life a bit more bearable?

Thanks in advance
Roses