Cancer support thread # 75 - come on in!

[Bloodybridget]

This is the new thread for anyone at any stage of cancer, from noticing a possibly warning sign, through tests and scans, diagnosis, treatment and beyond. Come on in for advice, sympathy and support.
The last thread is here.

If you've been on a previous thread, please come and say hello and introduce yourself!

If you are a relative or friend of someone with cancer and looking for support, there are other threads on this topic - this one is for cancer patients ourselves.

Just quickly checking in to say Hello All! I've just had chemo no. 11 of 16. Tired and achy with a very patchy head of hair. Weirdly foof, armpit, leg hair and even eyebrows started growing back?!

@LucyWarlowsRightHand are you in NL?

@citybumpkin yes in Amsterdam.

You’re 2/3 of the way through now!

@LucyWarlowsRightHand Hello from Den Haag! I've got rads to go after chemo. Feels like an age until the end of treatment.

@citybumpkin if I’m super-lucky I’m already done now (colon resection). I’ll know in about a week whether I should have chemo as well. Just taking it as it comes.

It would be amazing if yesterday/this morning was the worst of it, it felt very odd to not be interested in food at all and unable to eat. Now another patient has a visitor who’s brought in some yummy-smelling food, I’m delighted to report that I’m getting very hungry!

@LucyWarlowsRightHand Fingers crossed for no chemo! Glad your nausea seems to have passed. Hmmm...Dutch hospital food. No wonder visitors bring in food!

It’s not at all bad here, to be fair. Had a really nice spinach quiche last night (though I couldn’t manage more than two bites) and a good veggie soup earlier today.

Ten years ago I was stuck in hospital for a week after giving birth and the menu was cheese sandwiches twice a day and a hot meal at lunchtime

@LucyWarlowsRightHand Veggie? Bread and cheese here. Obligatory madeira cake for brunch!

@Thymeout I was wondering that too, about if results of the PET scan would make a difference to the plan. I have a lot of questions for my consultant on Wednesday!

@LucyWarlowsRightHand hope you can enjoy some food today - assuming there could be something enjoyable! @citybumpkin it's certainly a long haul through treatment for you, but having got this far through chemo, sounds like you're tolerating it pretty well? How are you doing emotionally?

@Bloodybridget I've had minimal side effects compared to others. That being said I woke up this morning with bad shoulder ache. I think I got complacent and overdid things with DD yesterday. I forget how fragile I actually am at the moment. Emotionally its been a struggle. I've had some counselling sessions but really in all this I/we are on our own. I hope you are doing well

Happy Sunday gang!

@citybumpkin @LucyWarlowsRightHand can I join in...I was born in Utrecht

Can someone talk to me about fucking fatigue. Not just tiredness - because I'm sleeping 8 hours a night at the moment. Following Drs suggestion, I've been going out for a walk every day. Just to the local park and back - so averaging 2-2.5 miles. Well it's completely floored me. I haven't been able to do anything this weekend. Just about get dressed. Walking from kitchen to lounge is completely draining.

How some of you can run

or cycle is beyond me - is it some kind of super human effort? Do I just have to accept I'm going to be feeble for the next 6 months (or a year). FFS! I feel like some kind of toddler throwing a tantrum when the fatigue hits.

I say this as someone who didn't actively exercise just walked everywhere (or happily spent 4 hours a time gardening) so I know I'm not the fittest but this is ridiculous.

Or this isn't normal at all and could I need I some platelets instead? The feeling is similar

Hello to the Dutch crew from the ME! Glad all went well @LucyWarlowsRightHand.

@InOtterNews I took up daily exercise on the oncologists orders (the Devine Dr M!) and it took two full weeks to feel ‘settled’ into the routine (though I mix up with cycling and swimming as well but don’t run!). I’m only 1 down on chemo (so a long way behind @citybumpkin - but you are giving me inspiration!). However I do get tired and got quite distraught yesterday - and just like an over tired toddler (according to DH! He says it’s not good for his health if I don’t rest enough)! So am now embracing regular nap time and prepping for round 2!

I’m the queen of fatigue at the best of times so can’t give much advice I’m afraid Otter ☹️

I’m at home! Courtesy of my amazing neighbour and fellow school mum who came and picked me up from hospital. She played it down but I know she had a bad headache this morning, and still dropped everything to come and get me (including navigating car parks, paying for parking, and wheeling me out in a wheelchair). I feel very lucky to have such lovely people around me.

Now to focus on recovery. ExH is here to look after us all for a bit.

@InOtterNews I love Utrecht! DP lived there for 4 years before moving to Den Haag. How long did you live there?

@ElaineMarieBenes I can't remember what your treatment plan is? You may find the first chemos easy but the moral is don't get complacent if you feel fine. Normal activities can really wear you out more quickly than usual. Pace yourself. One of the things this cancer shit teaches you is to take life more slowly. Eat healthy, loads of water, mild exercise, rest and sleep.

Sorry that second bit was meant for @InOtterNews! Trying to multitask and feed DD. Avocado everywhere!

@citybumpkin moved to UK when I was a kid when my parents split. I've been here longer than I ever lived in NL. Now that family has passed away I haven't been back for at least 10 years. I lived in a place called Loenen aan de Vecht. My Dutch is awful now.. (I've still got my passport and was prepared to use at times! #brexit). I very much miss poffertjes and gevulde koeken 🤤

I'm in between treatment now. Chemo is finished and I'm waiting to go in for transplant (mid September). So just maintenance for now. I guess this is the mental battle that I need to deal with. Wanting to do stuff, not being able to physically, and accepting it. I'm just frustrated as I've been desperate to get out of the house.

I'm slowly learning that I'm not a good patient. I felt so good on Thursday and Friday (after surgery on Monday afternoon) that I decided I needed a day out, so I made DH drive us all to the seaside for a long walk and fish and chips on the beach yesterday.

Oh boy I'm paying for it. I haven't got up from the sofa today.

My boob isn't too painful (although it is bright green - nice bruising!), but my arm hurts a lot from the lymph node clearance, and I think there is a lot of swelling around the incision now. With a blue-black bruise. Urgh.

Now I'm pretty sure I'll get told off when I see the BC nurse for the dressing change tomorrow morning.

Hope everyone had a decent weekend. I'm in awe of all of you!

@InOtterNews My DP lived close to the centre of Utrecht. I'm partial to a honing stroopwaffel!

Mentally, this whole thing is extremely tiring. I will be left in limbo when my treatment plan finishes as there aren't any further meds I can take having TNBC. Everyone around me will think "great, treatment is over and you can move on" but the reality is that its just the start.

How some of you can run
or cycle is beyond me - is it some kind of super human effort?

It’s not superhuman - it’s sheer passage of time. They don’t aim to cure my leukaemia (the only curative treatment is bone marrow transplant, which carried a distinct risk of death, so you only go down that route when other options have failed)

So I’m on a targeted inhibitor, long term. If you read the list of potential side effects, you’d probably never swallow one! But you do settle on them - I can remember feeling utterly overwhelmingly fatigued to my very bones when I started on the first one.

I had to be moved to a second line one, and went through all the acclimatising again. And am doing IK now.

It’s nearly 3 years down the line for me - I’m the new paradigm of living with cancer as an annoying chronic condition. And after that passage of time, and stable on a treatment with only mild side effects, you do get your energy back

So between appointments for my 12-week repeat prescription cycle, I can ‘forget’ I have cancer. Less so this year because of shielding, and always tense around the time of blood tests (what if the drug isn’t working well any more?)

And definitely not right now they’re planning to hoover potentially dodgy cells out of a boob.

Heartily recommend mindfulness courses btw. I did an eight week one at my local cancer support centre. It’s made a huge difference to how I’ve been coping with all the uncertainties of tests and results

And yes, I cope better with fatigue if I’ve at least been out for a walk. I’ve been pretty wiped out several days in the past couple of weeks - I’m sure it’s a stress rebound

Utterly intrigued at the green boob!
( bruise fairly readily, but mine are purple fading the orange)

It’s really interesting @iVampire, if you’ll excuse what probably sounds like almost sociopathic detachment. I don’t mean it like that at all. This evening I filled in a lovely friend of mine on the whole cancer thing and she told me that the masters in physiotherapy that I knew she was studying is actually in oncological physiotherapy. As you say, these days many live with cancer as
‘an annoying chronic condition’ and I suppose all other areas of health care are developing to reflect that.

I was thrilled to be home and I’m now realising that I’ve got a bit of an adjustment process ahead because I haven’t magically recovered from the operation just by crossing the threshold. I’m sure
I’ll get my head round it in a day or two. As I wrote to a friend, I’ve been so immensely lucky until now; never had a serious accident nor a major operation (nothing like a bowel resection anyway). So I’m going to have to learn some new tricks, patience, listening to my body, taking it easy, and all the other stuff I hate

Sorry for the convoluted and hard-to-follow sentences.
It’s been a long day.

I haven't been in here for ages, I'm sorry! The more scared I am, the less I want to talk about it, I guess. It's my liver scan tomorrow, and I'm really praying (in my atheist fashion) that it's not going to show any cancer spread. I am frightened, I think, because my good friend Sarah was diagnosed at the same time as me with exactly the same sub-type of breast cancer, and it was once it got to her liver that she went downhill and died.

I'm just so worried about my husband coping without me.

@BitOfFun I just checked in and seen your post. Although
Ive nothing more useful to offer than a handhold and a prayer tonight for you I couldn't not respond. After your loss it's understandable to have these fears. I'm sending you so much best wishes for tomorrow. ❤️

Sorry I haven't scrolled through other posts but I've been so exhausted recently with no motivation to do anything but I will catch up tomorrow. Love to all. Xx

I'm exactly the same, Gillmoregirl, with the thread when I'm tired or stressed- there's no need to apologise! Thanks for the handhold .

You can lean on me too, and I’m patting your shoulder

Sending you lots of love, @bitoffun, and wishing you a very boring, uneventful liver scan today.