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

[FcukBreastCancer]

Hello 👋

Hi, popping in to ask if psychological tiredness is a thing?

Haven’t posted for a while, so my story is stage 3 melanoma that has progressed despite immunotherapy- trying different immunotherapy from Friday.

I had a 5 day course of radiotherapy that wiped me out in terms of tiredness, but for the last week or so I’ve been on an amazing walking holiday, with daily distances of 6 - 18 miles. I know it’s ridiculous, but I managed it and it was wonderful- I am so lucky.

But as soon as I got on the train home I was hit by a huge wave of tiredness. I’m back into the rounds of blood tests and treatment plans now.

I don’t understand how I can walk for 8 hours and feel great, and walk to the tube and feel shattered. The only thing I can think is that when I was walking, all I had to do was walk. Even when I thought about my cancer it felt manageable. And now I’m back to reality. It doesn’t feel like depression, which I have had in the past.

I know this is nothing compared with some of the physical side effects that people are suffering but just wondering if anyone had experienced similar?

Latest blood results in - under active thyroid. Which probably explains why I feel so tired.

@Sbmpp good news your scan is stable! enjoy the break from chemo, I always think if its meant to be it will be, so if you cant have chemo theres a reason why even though you may not see it. well done for cataract surgery too, thats brave, it must be good to get that done with.

@ventress hope you are recovering, the blood clots have gone now I hope? its a bit scary that the chemo can cause them. I agree that this is a good place to be, and lots of supportive people here and I too thank everyone for helping us all get through this.

just wanted to share I met a lovely old man today (at a nature reserve type place) and we stopped and spoke to him and he was so grateful to be out and walking in nature again after not being able to for over two years and he told us about an unusual encounter he had - with some birds that he had seen on a previous visit and he got emotional and almost cried it had brought him so much joy and it was just a lovely thing to share with him and us, I had such a lovely day today and was just as grateful as him to be out in the open after months being unable to get out of the house while on chemo. Also met a delightful little dog who was so pleased to meet me and sat on my feet, she was adorable, Oscar would have loved her.

@Onewildandpreciouslife - great name - your walking holiday sounds fantastic, and I bet it did you so much good.

oh and scan and phesgo done, hand is bruised as vein blown by cannula, but its over with for another three months....

@Ted27 - today was your last chemo? hope you got all your questions answered and can now recover from chemo.

@cantbelieveIamhere

Yes, today was the last chemo, which knocked me out as usual. But its done. PET scan in 4 weeks.
I had an interesting meeting with a consultant yesterday, not my usual one. Its strange that although your deep in your brain, you know things, its not until someone says it that the implications become real.
I had a friend with me who works in a palliative care unit in another hospital and she played a blinder, organised all my questions for me. She was also exceedingly clever and managed to get them to do the SR1 form which will get me PIP without having an assessment, and a blue badge.

What I didn't know was that as well as 3 weekly Phesgo, I will be taking Letrozole daily. I'm a bit concerned about some of the side effects and how all of this will impact on recovery from chemo. But I will do whatever needs to be done.
At least with the PIP I can cover my living costs and can actually focus on recovery.

It sounds like you had a lovely day. Getting out in nature and taking pleasure in small things is so important. I got down to my allotment for half an hour yesterday and picked strawberries which were so lovely and sweet. The robins came to check me out as usual.
Do you have a break from treatment now for 3 months or is there other stuff going on?

@Ted27 that sounds really helpful for you, I am glad you have things sorted out, they wanted me to take letrozole but I said no.
I grow strawberries at home and they are so delicious at this time of year - its hard to resist a home grown strawberry, nothing tastes as good as that when they are warm from the sun.
I am on phesgo every three weeks for as long as I can tolerate it. I hope your side effects of chemo wear off quickly - phesgo on its own has a few side effects - itching is one and dodgy guts is another but I am eating a lot of all bran and flaxseed and it does help and when it doesnt its loperamide. I think you will find its much easier once you begin to recover.
I have never had a pet scan only ct scans, can you take your cat with you? (sorry its a poor joke)

Wow @Ted27your friend played an absolute blinder getting SR1 signed. Well done! And on everything else - you sound very calm and at peace 💐I love the sound of those strawberries! I hope the last phesgo aren’t too bad.

hey @Sbmppbig hugs 🤗 your day out sounds amazing. We’re having a heat wave here! It’s 33 degrees- I know won’t consider this heatwave temperature 😊

@cantbelieveIamhere. I’m pleased you’ve had the last chemo. I took Letrozole for a while, not very long as it wasn’t working for me. I was taking it with ribocyclib.

Having a different consultant is very interesting. They tell you things that your consultant hasn’t told
you and you certainly get a different perspective. I’m really glad that was helpful for you.

my update is that my dad had a stroke the night before last. My mum called my sister who called the paramedics. He had all the meds within 2 hours. Which is the NHS target. My sister is amazed at the improvement in him! he is having surgery on Monday to fix the aortic valve which is dodgy.
Everyone is happy so I’m just so happy too 😊

Personally I've had an MRI this morning on my head and torso. This is to check the spread of the brain cancer. Fingers crossed as they only get half the contrast die into me. Veins are rather collapsed now. I also had a call with the oncology nursing team. I think chemo will stop for a few weeks while they review my meds but we’ll see. My rubbish wheelchair chucked me across the pavement in the high street this afternoon so DH had to catch me. It’s left me rather battered🙁

@Ventress So happy to hear your dad is doing well. Good luck to him on surgery and your mri results. It never rains….I can’t imagine the w/c! It’s hot again out your way? I did the conversion and that would put us at 91 degrees. Warm definitely but what we expect. I just got back from visit with primary Dr. he thinks I should have a blood transfusion and the low rbcs and hgb and hct are due to chemo and granayx (granyx suppresses rbcs) so maybe no shots after chemo next week. Maybe we can take a break together. Very happy your dh caught you too. This journey is not without its twists and turns. Hang tough ♥️

just in case anyone is interested - heard this by chance this morning - food programme about importance of good food and cancer treatment - in case link doesnt work BBC radio 4 at 11.00 am today
https://www.bbc.co.uk/sounds/play/m002xpbp

@ventress sorry to hear about your dad but good news that they helped him so quickly, your wheelchair sounds like it might need an upgrade.... good job your DH was quick thinking. good luck for your mri results.

@Sbmpp hope the blood transfusion gives you a boost and helps.

Thank you for the link @cantbelieveIamhere. I will listen to this later 😊

Thank you @cantbelieveIamhere. Dad is home now having had a small holiday in the local hospital involving a couple of small operations!
thanks once more for the direction to the Food Program. I don’t eat much these days but I feel like eating one or two forkfuls of hospital food is enough for me as a healthy meal. I spoke to the chef the other day who said food per meal was weighed into food groups, as was the waster

Water! Not waster 😊

As was the wastage…

any way, I hope you guys are are okay, as you can be anyway. I owe you so much and I send love into the ether everyday which is love for you.

take very good care or yourselves,, not sure how many days I have left but I will spent them with family xxxxxx

Ventreess I am sending you much love too. May your days with your family be peaceful . Thank you so much for all your kind generous support , I’ m still hanging tough 😉 , lots of love xxx💕💕

@Ventress Sending you love and peace, you’ve been on my mind so much. Thanks for all your care and support. Wish we lived closer but boy what a game changer the internet is. Hang tough.

@Ventress may your days be full of love. I don’t post much but you, and others in this thread, are in my thoughts.

@ventress yes I have been thinking of you too, I had a week away in Norfolk and it was cooler temperatures mostly apart from the last day that was unbearable and I could barely breathe.
It was lovely but I had two bad nights itching and got a cold and it was sad as Norfolk is where we went for Oscar holidays. I have spent today crying and feeling sick of cancer and sadness and sorrow and missing him. Scan results due soon.
I cant tell you how much it has helped to be on this forum with you and I send you prayers and love too. Its all so hard.

@Sbmpp yes thank goodness for internet hope you are doing better than you were last week and that your blood test results are improved.

,

@Ventress

I have known you for such a very.short time, you are an amazing person.
I wish you strength for what lies ahead, precious time now with your family.
Much love xx

I have been hanging tough recently. Just had a double masc with reconstruction and only discharged from the hospital yesterday. Absolutely in the trenches again.

i don’t post much these days but I keep following, as always. @Ventress you are in my thoughts and prayers. I hope you have love and peace. I will be thinking of you.

Thinking of you ventress xx

Hold in there my double was in feb it took a few weeks but it’s fine now xxx

@Nonamelass it’s been an absolute roller coaster. I think coming off the anaesthetic and the morphine absolutely messed with my hormones / emotions I’ve not stopped crying all week. I finally managed to get myself out of bed without help yesterday, so small wins.

Yes that anesthetic works wonders for a few days then it’s a different story. It will get better, promise. You’ve not doubt had the heat to deal with on too of everything. Keep on hanging tough you’re nearly there xx
@Ventress sending more love your way xx

@Bangersndmash that sounds tough i hope you get lots of strength to battle through to recovery, I would be in bits too we are only human sending love

Thank you all. I am here. Had what they call a “delusional episode “ in the early hours in the new ward which was scary, DH offered to show the oncologist some of the texts he’d received from me ! (Pure gibberish!) oh well.

oh goodness, @cantbelieveIamherethat doesn’t sound great 🙁 I hope you and @Nonamelassare okay today x