Cancer Support thread 88 - virtual rage room currently empty, virtual collective afternoon tea - all welcome!

[LemonDrizzle10]

New thread

Each I think its normal to have days of doing nothing during chemo, if you can't rest during chemo when can you. Your body is having a lot done to it and it needs you to rest. I ate lots of sweets in mine and was drinking some alcohol by the end and normally hardly ever drink, its just whatever gets you through each day. Enjoy the graduation. Its great when chemo finishes though for me it was a few weeks then radio but even so I was very happy it was over. Afterwards when its the end of treatment it does take a bit to adjust to a new normal and also found the side effects went on for about another 3 months before improving but was still able to start doing quite a lot more then.

I wonder if the radiotherapy will start before my PET scan or do they do all that first?

I didn't have any PET scan after chemo last scans I had where pre surgery which was pre chemo and after surgery then said clear margins so NED. I would guess if its a scan to see if chemo has worked it will be pre radio. Pre radio I had a CT planning scan and there was about a 3 week gap between last chemo and first radio though largely waiting list times.

@AllotmentTime No I'm not working at the moment and I think it's just as well because I'd be struggling massively. I do have my DH, who has a chronic illness, to look after but that's not so bad as I can do things when I can.

I've not been feeling well at all. I am pretty anaemic, iron does nothing except make me more constipated, I had to have a blood transfusion before the surgery and I felt a bit better but it's going downhill again a bit now. Also have abdominal/pelvic pain which makes things difficult. I can't eat much, I've lost nearly 25% of my body weight and I feel pretty weak.

I find it really difficult to talk about myself and this. I come from a military family and if any of you know what that's like, well you know! You don't make a fuss when you're ill.

I really feel for all of you who are dealing with elderly parents. My MIL had dementia and I was her carer until she died during the pandemic. I have spent many interminable nights at A+E and days at hospital appointments, which was hard enough and I was fit and well then! It all becomes extremely more difficult as well once they are immobile. 😔

@EachandEveryone you just have to go with the flow. Bedrest and Aldi chocolate sounds like a perfect day!

@Silkierabbit it occurred to me that I might spend the second half of oral chemotheray learning a new language. But which one? Italian always sounds so beautiful and I have a Latin O level which might help! Or I could practice the piano more and get competent. I must do something other than reading trash novels about a Little Cup Cake Cafe by the Sea! My brain is going to mush.

Today I went to see DM89. She is obsessing about the migrant boat that is going to be moored about ten miles from her. She thinks the 500 migrants will be sent in coaches on a day trip to an attraction up the road from her and the coach will break down and she will have to make them all a cup of tea. Where do I start unpicking that one? Bless her.

Good luck to all waiting for results etc this week
Top x

I was just looking up Spanish courses @TopOfTheCliff - I speak adequate tourist Spanish, but would like to get better. It's part of thinking what I want out of my life instead of feeling trapped by my family obligations. I had thought about spending a bit of time in Spain in the autumn, possibly going to a language school for a week and then travelling around a bit, but now obviously dependent on whether there is anything unwanted going on in my body!

Hey everyone, hope you've managed to find some happiness in your weekends.

I had my MRI appointment through, with a date that I can't do. We go away to an event for one weekend every year, it's next weekend and I've had my MRI through for the Saturday evening. A part of me thinks the right thing to do is to stick to the appointment but then a (bigger) part of me thinks that this is my favourite weekend of the year, and I don't know what next year will look like or whether I'll even be here (my thinking is quite negative at the moment).

I feel very fortunate, especially reading here, that the 2ww target has been met repeatedly for me. But I don't know how much difference a few days would make. If it's a malignant tumour on Saturday, it'll still be a malignant tumour on Tuesday. And I've clearly had it for a while for it to be so big. Meh... I hate this so much already.

The gynaecologist also had me do more blood tests, I might see if I can get the results of those before I make my choice. But who do I even call for that? The GP? Or gynaecology at the hospital?

@Crimsonbow if you have bloods at the GP surgery they will get results in but if they were at the hospital only the specialist clinic will have them. Can you get online to check? I can see my records through Airmid at the GP and Patient Knows Best at the hospital but I have a log in set up for it.

I'd be tempted to go away as planned @Crimsonbow but the main thing for me I think would be how soon they could give me an alternative date, not so much because I'd be worried about the cancer spreading but more the psychological effect of more waiting.

Italian always sounds so beautiful and I have a Latin O level which might help!

Hello Top, I’ve been having Italian lessons for two years now but even though I find languages impossible I really enjoy it. Not that I use it very often when in Italy which is a place I love and visit a couple of times a year. I’m never happier than when I’m stumbling over Roman ruins or looking at pieces of history in a glass case or hanging up on the wall of a Museum. I just get all shy and tongue tied, very aware of not wanting to look silly which stems from learning Arabic and people actually calling others to come and listen to me trying such was the novelty of me 40 odd years ago in this part of the world. I tell myself now that I don’t have to use the Italian and that it’s good to do it even if it’s to keep my mind active.

Re your Latin ‘O’ level (I used to attend mass in Latin) - my daughters in law are both Romanian and their language is Latin based with the result they both speak 4 Latin based languages fluently as well as English. I think your ‘O’ Level will help you.

I think it’s like Arabic - every country has their own version but the people from those countries can understand each other. And I recall years ago when I watched a film with my girls about the life of Jesus and much of it was in the language he spoke, Aramaic, I think and the film started with the prayer for the dead and my daughters sat and said it under their breath in the Cinema - in Arabic. Even me with my deaf ears for other languages could hear the similarities. I find this kind of thing fascinating and if anyone else does a visit to the Abrahamic Family house in Abu Dhabi is worth a visit.

Best wishes and lots of love to everyone.

OH @PollyThePixie I am sure you would be welcomed if you tried speaking Italian or arabic. My DH has only a hazy grasp of French and Spanish but he launches into action with much hand waving and cheerfulness and seems to make friends instantly. He is the same in English too! I can speak French especially after a few drinks but fancy trying something new.

Your brain seems very good to me Top Though I remember mine going in chemo and waking up and having zero recollection of the past few days each week. I did Russian duolingo in chemo, no idea why and obviously not been able to use it so not sure was the most sensible choice though it did show me learning Russian wasn't impossible and my brain worked still. A language where you may use it is probably more sensible. I also watched a lot of trash TV like Below Deck but sometimes I think you need the escapist things where you can switch off and dream.

That sounds like a lovely plan Sierra Due to DS we may not go away the rest of this year though we have been to Maldives, Azores/Porto and Paris in past 12 months so can't complain. I have switched my 2020 AirAsia flights to Borneo Aug 24 and hoping all will be well then. I had a book about Borneo by Agnes Newton-Keith I was due to read at surgery but then gave to DH and now we can find it about life in Borneo in the 1940s I think.

I’ve been learning Spanish on duolingo for ages and one of my sentences to translate yesterday was ‘what do you do to relax in your free time when you are not working?’ It occurred to me that I wouldn’t really know how to answer that so I must make more effort to make time for things I enjoy. Can you really say ‘I go to the theatre’ if you only go once or twice a year? But having said that, we did have a micro break in the Lake District at the weekend and had a lovely gentle walk round Buttermere and skimmed stones. The last time I was there, DD1 and I did a very ambitious walk along the hills on one side of the lake with about 3000 ft of ascent and lots of scree. That was incredibly beautiful and an amazing day but I was quite content yesterday down at lake level looking up.

Day 7 of Abemaciclib and no diarrhoea so far. But it often starts after a week or so, apparently…

Morning everyone, I hope you all had an ok weekend?

I'm meant to be off to my friends to see her dad again today but cba - I also suggested a wander to the big Home Bargains up the road to dd1 & cba to do that either. Mostly because it's forecast rain & I don't want to melt in it 🤣 I might suck it up...we'll see. Going to do the thrilling task of mopping the downstairs loo floor first, then another coffee.

Talking of keeping your brain going; I have a couple of child development courses to look at - related to work but I need something to keep my brain from melting away. I did try Spanish on Duolingo but then lost my streak & lost interest. Maybe a different language would appeal more 🤷‍♀️

I've also been working on a couple of fairly complicated crochet patterns - frustrating when I had to pull one in its entirety, but satisfying last night when I got to the end of the first page of the pattern.

I think the lack of need to get up & go to school is what's doing me - I'm sitting here, still in my pj's, with no desire to shift. Usually I'm go-go-go from 6am & then squash in several other things after work/before bed. Instead, life is veeeeeery slow atm - maybe as it should be but still frustrating sometimes.

Anyway, enough waffle! I hope everyone's Monday is stress free 🙂

@Silkierabbit thats crazy! I lived in Brunei and travelled through Borneo! The book you are talking about is perhaps Land Below the Wind, she also wrote Three Came Home. The first documents the wonderful life they had first of all living in Borneo and the second the experiences they had as prisoners of the Japanese. It’s an amazing place for the natural world, like stepping back in time!

I’m struggling today - I’ve walked the dog twice and keep crying. I was so anxious this morning thinking about my surgery in ten days.

@TopOfTheCliff Im still ruminating on the UK. I just miss such simple things like meeting my Mum for a coffee. I’ve had a good run, travelled loads. I’m at the point where that’s not what I need anymore. So I’ve basically told my husband that I want to move back. He’s doing the ‘let’s rent the house out here thing’ but I think I’m done. When it comes down to it friends and family are the most important things, I always knew it but have always been focused work and travel until the last two or three years. Im lucky that my parents and step-mum are all alive and healthy. Im the one who likely has less time or not depending on what the genes have in store.

On a lighter note I’ve lost 5kg so that’s something.

Hope everyone is feeling as well as possible and are keeping busy on this Monday.

Thanks silkie - something to investigate

Sorry you're feeling bad @FairyWren7 - waiting for things is weird, on the one hand you want them done to get better and on the other they're terrifying, but sometimes the wait feels worse than the actual experience. I am on the one hand dreading my consultant appointment on Wed because she might tell me the cancer has come back but on the other want it over with to know what I'm dealing with, even if it's bad news. I didn't sleep well at all last night but still trying to work to get things out of the way in case the rest of the week is a write-off.

@SierraSapphire thanks for that. For me the wait has generally been the worst part of it. I’ve had a lot of surgeries, and it has got worse I think with each one.

I hope you don’t get bad news on Wednesday, it must be horrible waiting to find out. Fingers crossed that you are ok.

Speaking of Spain I went last year and had a fantastic time. I went with a friend for the first half and then solo. We went to Granada and visited the Al Hambre - just amazing history. (The cathedral has the tombs of Isabella and Ferdinand in lead lined coffins in a crypt that you can look into!) Tarifa, Cádiz - which was amazing - saw the Virgin going through the streets in procession, Cordoba - the ancient Roman capital where there is a cathedral and mosque combined, Seville - amazing flamenco on the streets and finally Madrid - loved the palace and the Prado art gallery. I had such a fab time, just carefree, walked miles, ate lovely food and drank lots of coffee and wine depending on the time of day! I’m writing a novel that has Phillip of Spain as one of the characters and the Prado has some amazing portraits in it. The one of Juana the Mad is really something! I also visited El Escorial which is the palace Phillip had built outside of Madrid!

It’s given me a real hankering for Europe! I want to visit the Italian Lakes next and also Lisbon.

I think you should follow your dreams… it’s so frustrating to put things on hold. That’s what this year has been for me. I’ve written 40,000 words so that’s something, exam marking at the moment though so it’s on hold.

Have you been to Spain before?

@FairyWren7 I’m Australian married to an Englishman and living in Australia. Our plan was always to live in the UK for a few years after the DC finish school in a couple of years. This plan might not work for me now and I can see DH’s heartbreak even though he understands my reasoning. For me it’s not family/friends as tbh most of them haven’t been as supportive as I expected. But my particular cancer has a significantly higher survival rate in Australia compared to the UK, and I just don’t think I will have the mental stamina to switch to a completely new and unfamiliar health system in my late 50s with so much at stake.

We are trying to work out a new plan that will work for both of us, maybe spending part of the year in the UK but returning to Australia for medical checks. I’ll be three years post diagnosis by then so we might have a better idea of how things are panning out. But it is very hard when you feel like whatever you do, someone will be disappointed.

That sounds amazing @FairyWren7 - I've had a bit of a thing for Spain since my mid-20s (30 years ago!), which is when I started to teach myself Spanish. I've been to many of the big cities, and when I was home educating DD we stayed in Valencia for a week and did Spanish lessons before travelling around. I've not been to Toledo, Leon, Santiago de Compostela (have considered doing the Camino) and I've only passed through Cadiz for an hour or so changing trains, I think it might have been when we stayed in Conil up the coast, so that's on my list of places to go to as well. I loved the other southern corner too, but I think it's more developed now, I spent a very happy week camping at Cabo de Gato in Almeria and cycling along the coast to deserted beaches. I think I will at least try to do a Spanish class here next term - I have started a few times and then got waylaid by various family crises (the story of my last eight years or so!)

@Remaker its so hard for everyone involved. My parents keep saying that I’m getting better healthcare in Australia.

You’ve actually raised a really good point. I’m not sure about outcomes. Once the surgery is done I’ll know exactly what’s what I guess.

At the moment I feel like I’ve done this to myself and it’s my own fault…

My husband was happy for me to have an extended trip back last summer. I really needed it after my hysterectomy and the pandemic! It could be doable for this ongoing but I just want to feel settled. I don’t here. I’m not too sure why, the pandemic or the fact I’m getting older or just all of these health issues.

You are a bit older than me. I’m 46, a good few years off retirement (not that I’m implying you are) but all of this time off working for me is not helping our financial situation. Also I’m a teacher and I’m not sure I want to return to the UK system, husband would need to work - so there are many considerations. If you come up with a solution let me know!

@SierraSapphire I signed up to do the Camino but wasn’t fit enough to do it. Hopefully one day. All of those places sound amazing. I will have to have a look! So much more to see, I hope I get to do a bit more.

I'm off to Northern Spain in 2 weeks were travelling on the Plymouth to Santander ferry. We have spent many happy holidays on that coast and the Picos de Europa. Some of the Spanish call it the real Spain as it was never conquered by the moors and the reconquista started at Covadonga in Austurias. Then we are traveling to Extremadura where we used to live for many reasons(to boring to go into) we had to return to the uk. I'm very excited after finishing chemo I'm more than ready to embrace life! Travel insurance for me was far to expensive 😩,oh well I'm living my best life x

@FairyWren7 my surgeon and oncologist are aware of our situation and have been fantastic with sharing the statistics in Australia vs the UK. It was all a bit up in the air until I’d had my surgery and got the pathology back and knew exactly what we were dealing with. But now we have some firmer numbers.

I’m 55 but we hadn’t really thought too much about retirement until this year. My illness has made us reassess and we don’t want to spend too much longer stuck in jobs that we are a bit bored by. I haven’t been able to work since I was diagnosed and it’s definitely a strain. So we need to top up the coffers before we can think about giving up work. A friend of mine was very successful and career focused and since having breast cancer she has resigned and is looking for something less stressful. A cancer diagnosis can certainly change your priorities.

It is lovely to hear of everybody’s adventures in the past and plans for the future. Since I met DH we have travelled mainly on bicycles to the Sahara, the Arctic and the Himalayas as well as Cuba and Vietnam. With Covid and cancer all that has stopped but he is still cycling huge distances and hoping I will be able to join him next year. Between cancers I sailed solo round the UK while he pedalled along the coast. I am not sure yet how fit I will be as I need a new hip before we can get going again. I quite fancy a cruise up the West coast of Canada if I can persuade DH off his bike!

Today I have abandoned plans to sort my boat out because a. It is raining and b. My guts have exploded! Quiet day near the bathroom instead I think.
On Wednesday I celebrate the chemotherapy halfway point. Hallelujah!