Cancer Support Thread 98: support for those diagnosed and going through treatment

[FcukBreastCancer]

Hello 👋

They are just lovely aren’t they? ❤️

oh my goodness, we had the best crispy bacon when we went to Florida two years ago. It was amazing! DH and DS had theirs with pancakes and maple syrup and I had mine with french toast. It was dreamy and we had it for brunch every day for about a week!

I’m so pleased that your husband is so good. We have a week of activities for unpaid carers in a few weeks time. We are away for most of it though. Do they have something similar for your area @Sbmpp?

you have the opposite to us! We have big bills in the winter and smaller bills in the summer 😊

I’m sorry you don’t get on with paracetamol and ibuprofen. I know lots of people don’t . I hope there is something you can use.

you too! Take care of yourself, hang tough @Sbmpp (love this phrase!)

I’m sorry @Anonymousfivetrillioni didn’t get a chance to speak to my sister at lunch (opposers of the table) but I will ring her today and ask about the tamoxifen. My friend’s mum took it for years and years, but this was a long time ago. She certainly found it very effective. I’m glad you are okay on the half dose.

@Ted27so pleased for you 😊 I’m glad the phesgo will be only every 3 weeks.

I always get a bit of a “party bag” when I’m on chemo ward @cantbelieveIamhere😊 as well as the next set of drugs, last time I got a full bag full of bits and pieces from MacMillan like rich tea biscuits and mocha Nescafé sachets 😂 I hope the rest of your chemo goes well.

I hope to start on my memory book today - sending DH to the attic 😂

@Ventress

I hope you find making memory books helpful for you.

As my son is adopted we already have lots of memory/life story diaries and scrapbooks so our lives together are well documented. I used to make him do a scrapbook every summer with photos, postcards, tickets, maps, lots of random things. I can hear him now wailing what shall I write.
We used to get them out a lot, less so now he's grown up, but they are things we both value because I am a single parent and although he does have siblings, they did not grow up together.
For me its nice to know that when I do pop my clogs he will have those memories

@Ventress The breakfasts sound wonderful:). We have some favorite places for that too. It also is too far to go to unless on vacation.
I don’t think there are carers here in the US or a lot of the things that sound great in the UK. Family often cares for family. Family gets to pay for home care assistance. Family cares for foster kids. It’s so difficult for them.
I am sitting in UC because I’ve been coughing up blood for the past week. I saw my oncologist last Tuesday. The bloody cough started the next day. Of course it did. I messaged my onc today because it was increasing thinking she’d add an EGD with my Colo. No such luck and here I am. My dear dh sitting next to me, I’m waiting for a chest CT, CXR, lab etc. May all of you be well.

That’s gorgeous @Ted27💐 your son is very lucky to have you and you are lucky to have him. Being a single parent must be hard. I’m not sure I’d even be able to live at home if it weren’t for DH as I’m not very mobile at the moment. I’d need carers at least. I’ve added my son’s “learning journey” from nursery to the memory store and also a data stick of my favourite music. We did a photo album of him at 18, earlier in the year, which he enjoyed getting. We are getting there. It won’t be as comprehensive as yours though!

oh @Sbmppare you home yet? I do hope they have done the ct, scan , cxr and labs now and your lovely DH has been able to take you home. What a nightmare for you.

I have the district nurse coming in today to look at sutures and drain in my chest. I’ve had horribly swollen feet, ankles and legs. Could be down to the weather but happened at the same time as the drain so a little suspicious. My cst said to mention it to the district nurse.

I do hope you will be better soon @Sbmpp. Very best love and best wishes to you 💐 and to you @Ted27 and everyone else on this thread. Be well.

I hope you are doing okay @cantbelieveIamhere🤞

@ventress bless you yes I am okay, still battling the itching which woke me up at 3am on injection day and I was up until 4.30am, this is the hardest time for me as no Oscar for company and it makes me cry.

I hope you get some answers today re the swollen feet, it doesnt sound right to me so I hope the nurses pay attention to it.

@sbmpp I hope you are okay - its worrying that they have cancelled your treatment again, is it every week?

on a positive note we got up very early yesterday and had a walk in a country park that leads to the sea and it was peaceful and cool and just what I needed for my soul and somewhere that we havent been to with Oscar for years so it didnt make me cry.

At the moment I cant walk anywhere I have been with him without floods of tears and seeing him running around in front of me.

sending good wishes to all

@cantbelieveIamhere

Oscar sounds like he was very special

Its interesting what you say about seeing him.
My cat died last August. He was 15 and I'd had him from a kitten. Of all the cats I've had he had the biggest personality. His ashes are buried under an old rose tree in my garden which was one of his favourite spots. I've lived in my house 30 years and I've never seen this tree flower so magnificently as it has this year. I've also had a very strong sense of him being around the house these last few weeks.
I have got two cats now who are very different to him in terms of personality so I don't think its them I'm seeing.
I can think of Eddie now with a smile. He was a great companion for a long time and he had a good life. I hope you will be able to think about Oscar in that way eventually

@Ted27 thank you - I hope so too, all of my animals have been special but there was something about Oscar - he was very clever, understood a lot of words, he had an instant affinity for my son who is autistic and because he was an anxious dog he was with us all the time, never left alone so is a huge gap now hes not here and also he was so young only 6.

Weirdly when I was crying about him soon after he died a seagull tapped on our window in the midst of my tears and he keeps returning and tapping on our window and its not everyday but seems to be just when I need distracting. Today I was hanging out washing and crying over Oscar -( he would always follow me out with the washing )- the seagull arrived in the garden - its like hes watching over me, very strange but quite comforting.

Eddie is a great name for a cat, he sounds special too.

@cantbelieveIamhere Oscar was only six? Now I really feel bad :(. I am so sorry 😢. I like the seagull visiting you. It’s important to hold on to comfort.

@Ventress @cantbelieveIamhere Thanks for the concern. No PE (which I figured rightly so). CT and cxr showed sm pleural effusion 🤷🏻‍♀️? Labs ok (low RBCs, platelets, WBCs like usual). NP said ok to go home. Works for me although I feel very SOB when getting up from a sitting to walking position. @Ventress how was the nurse visit? Did you get any drains pulled? Have you tried elevating your feet/legs to decrease the edema? @Ted27 When we had our Francis pts we had him cremated after.. I’ve been thinking of having his ashes dug under two new rose bushes. I was happy to hear your outcome.

Oh bless him @cantbelieveIamhereits so hard when they are young and it’s so unexpected, our Luna was just 8 and knocked us sideways when she left us. We will be going away for the anniversary as I’m just not ready to face it yet. I’m pleased you found a different walk and a seagull to look after you 💐 I hope the phesgo itching eases soon.

@SbmppI’m very glad you are home safe and sound. Your labs are okay right? The moving from sitting to standing is hard, I have trouble with this too. I do sit or lie with my legs up but they are still very swollen. Not sure why but I was reading an article about lymphatic massage (not beauty massage but proper massage). DH has emailed the lymphatic nurse to ask if this massage would be helpful.

i’m sorry about Eddie too @Ted27it’s so hard and he had been with you for so long. Burying him under those rose bushes sounds lovely, and that the bushes flowered so magnificently is wonderful 🥰

The district nurse came on Friday morning and changed my dressing and drained it. They drained over 500ml 😱 which really surprised me given it was only about 4 days since the drain was put in. It has definitely helped my chest though , which is good. I’ve ordered a couple of swingy dresses for going away next week. Usually I slob around but can’t do this at Sissinghurst!

DS has the last three of his A levels exams this week. I’ll be very relieved when they are over (I’m sure DS feels the same!)

I hope you are all having a relaxing weekend and not trying to do too much. Best wishes to you all 💐

And I have a can of Pepsi! Another craving but luckily DS had some in the garage 😊

@VentressI love Pepsi but it doesn't love me! A friend bought over some Peroni 0% and even though I am not a beer fan it was gorgeous! I may have to buy some more.
Food and drink question - my taste is different since the chemo. Is that a normal side effect? Nothing tastes like it should. Although I had cocoa pops for tea and they were amazing!

I think it’s a thing @Pieceofpurplesky! I’ve been through so many different cravings - first I had a really sweet tooth (which isn’t like me at all) and I still can’t drink “normal “ tea. I used to run on tea so this is weird! I’ve had various cravings since then.

I like the sound of 0% Peronii, I’ll definitely try this 😊

Cocoa pops for tea - dreamy!

@ventress oh I am sorry Luna was only young too - its such a shock isnt it, I can understand why you want to be away. I am glad your drain was successful and has helped. Definitely find out about the lymphatic massage and have a lovely time at Sissinghurst, its beautiful there.
Glad the exams are nearly over, its such a stressful time for everyone.

@sbmpp bless you for your message, yes I am grieving badly at the moment and have had many days of crying after being okay for a few days its all come back in a big wave. So all your numbers were okay but they didnt do treatment?
Or am I misunderstanding. The seagull is quite a character, he taps on the window and then when I arrive he flies off to wait for me to feed him, and chases off any other seagulls, hes ok with other birds but no other gulls are allowed in the garden.

@Pieceofpurplesky yes your taste goes haywire during chemo, you have to find things that taste okay and just eat them, I ate a lot of rice pudding and porridge with cinnamon - couldnt taste tea or coffee and like @ventress I did get a sweet tooth and ate lots of almond cakes. The taste gradually returns to normal once chemo is done. So indulge yourself in whatever tastes nice to you!

I had a lovely encounter with a dog today who I have known for a while but hes never brave enough to let me stroke him (hes a rescue dog and been badly treated) but today he let me stroke him - it was such a treat almost as if he knew i needed it. joy in the simple things, am trying to find something lovely each day and be grateful for it. carpe diem

Oooh I’ve just seen this on the BBC. would be excellent . Daily pill doubles survival time for pancreatic cancer patients https://www.bbc.co.uk/news/articles/cy82l435171o

Thank you @cantbelieveIamhere. good to have the Sissinghurst recommendation too, thank you. Hopefully find out about the lymphatic massage today. This weekend has been unpleasant and my drain has been itching (maybe the sutures healing?) I hope you weekend has been good and you have been able to find some walks which aren’t as upsetting. Your seagull does sound like a real character 😊

oh gosh, almond cakes! Yes they were gorgeous. The whole idea of cravings is strange but very true!

carpe diem @cantbelieveIamhere❤️

I hope you all had a reasonable weekend. Still decent weather here although the forecast says possible rain today. The garden certainly needs it!