Cancer Support Thread 89 - the best thread that no one wants to be on.

[LemonDrizzle10]

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@Greyandrare123 I'm sorry to hear this. I don't think you're over reacting at all and I can completely relate to the cycles, I live from one 28 day cycle to the next for my oral chemo and it's very hard. I get a lot of joint and bone pain as a side effect and can't stand for long times which I know is annoying for some people around me but it's not as though I want to be like this. Cancer takes away so much and having to explain to others is yet another thing to deal with and makes me feel exposed. I think it's very insensitive of S to present you with an itinerary with a tough walk and swimming, I would be horrified at the thought of just getting into a swimming costume with my battered body. I would be overwhelmed by it all too but It's very unfair that you have to pull out of a holiday you're looking forward to because you aren't well enough to accompany S on her preferred excursions. Could your DH have a word with M and suggest he and S go off for a couple of days alone to do the more energetic days out alone?

@Greyandrare123 it's a bloody shame to cancel your place - treatment already takes too much from you.

It's also really rubbish of your friend to put you in that position. I appreciate sometimes people don't understand physical limitations when they've not suffered through them yourself but she should be giving you more agency than saying 'nope, can't do that' which does get soul destroying. I've had similar from some, an invite for a couple of days relaxing turned into a three day hike with wild camping - at this point I was a couple of weeks out of treatment and still needing at least one nap and was exhausted after walking a couple of miles, let alone 30 over the course of three days. It feels crappy having to say no, especially when previously it would have been something I'd have loved.

Can you be frank with your friend? Tell her that this is really a rest and recuperation break for you and whilst you are happy for her to go off and do her own thing, you will mostly be relaxing with your Kindle and maybe doing a few walks as and when you want to. It does seem a shame not to get a break away at all.

@Ikeameatballsandwich good luck with your treatment - how does radiation seeding work?

@Florabritannica wishing you best of luck too.

Well, in the spirit of Trying New Things before I go back to work in a couple of weeks, I'm off in a sensory deprivation flotation tank today. I suspect I've just paid thirty quid to be very very bored for an hour but we shall see. Trying to keep myself amused and busy as it seems everyone else is away or working this next week and I have absolutely exhausted solo pursuits. I'm grateful to be at the stage where my energy levels are good enough to resume things though, albeit on a more gentle side of the spectrum.

@Greyandrare123 I read your post in the waiting room and now have time to post.

I can completely understand the feelings you deal with. You have invisible disabilities and it can be very hard indeed to communicate your needs and have them understood. Especially with fatigue and pain - I truly think that until someone has actually experienced chronic levels of that they really cannot understand.

I recognise so much of what you describe, the overwhelm, the stress around commitment. You need predictability in order to manage your conditions and actually relax.

It's like living on a very low financial budget where any extra physical unplanned exertion costs and undisclosed sum of money more and so you risk going into debt, when you already live in your overdraft.

So no, none of your feelings about this are unreasonable at all. you clearly have found a holiday that blissfully suits you and you need. You also have done the same with work (I work 2 days due to previous chronic health issues which are ironically now a lot better and was close to thinking about upping hours till this popped up 🙄.)

Because I am an accommodating people pleaser Ill end up going along with the suggestions and feel drained and exhausted.

This is where I both also FULLY get it and where I would gently challenge you - from all my own experience.

I've learnt that you have to set some firm boundaries and gentle boundaries. She doesn't fully understand hence the suggestions, but I bet she wants to understand and she's just being polite and offering.

Could you reconsider your place - it's your holiday after all, designed for you and you deserve it the most.

Ideas - Ask Dh to gently communicate that there's a number of things you know you can do on holiday which you're keen to share with them, or do by yourself.

Or, Send a message to her saying "hey, I'm looking forward to the holiday, I'm limited by wonky spine so this is a list of what I do to relax and pace while there; you're very welcome to join me or go off exploring as it's such a beautiful place."

Your firm boundary is that this is your holiday and you're going to be saying no to anything that you can't or don't want to do. (And ear plugs for sleep, set evening dinner times if that helps you etc). Another firm boundary might be what you will do by yourself. Perhaps they'll go out for the day and you will rest at home doing your thing?

Your gentle boundaries are sharing what you will do with her, getting in first so to speak. Invite her to share your walks etc , and suggest more challenging options she could do and maybe you meet at a pub for cake afterwards.

I just think you should go and use this as a time to work on that people pleasing bit of you that's actually slight self sabotaging (I think it's been described as an inner Beryl on mn before.)

<disclaimer: I've been there and have the T shirt, the mug and the coaster>

Morning all, my Oncologist recommended I attend a "demystifying chemo" workshop through Macmillen. Has anyone done one and found it helpful?

Does anyone else sometimes think people are being extra nice to you because "youve got cancer?"

I went to a house / garden party recently and really hit it off with a woman I'd actually met about 12-15 years ago - we launched into chats about things relating to that house party (hers - for her husband's 40th) and just hung out together nattering thereon. It was just really easy.

I keep thinking I'll definitely tell her about xyz if I see her again (in depth discussions about the best homemade
pizza base and some funny stuff about a random artist) but catch myself short thinking "was she primed? Does she know? Or was that genuine?"

It probably doesn't really matter either way. If it makes me new mates. But there's a few people I wish didn't know because I'd like to enjoy the friendship without any extra pressure pushing it along.

@ClashCityRocker thank you - it was so much easier than biopsies. I think I was expecting worse. Only took 45 mins all in with another mammogram to check it. They put a tiny bit of radioactive metal next to where the area they need to find is.

It's a pre pre pre cancer lump that they'd normally do with a suction operation (? - just go in and cut it out? Not major surgery) but as I also have a cancer that needs hoiking out, they're doing both.

They will use some sort of imaging thing to find the area in the operation.

They scanned me with a geiger counter and I whistled and crackled so I now have a radioactive boob.

Thank you so much for replying.
Before I get onto me I havent heard of the de-mystefying chemo by MacMillan workshop but I would attend it as there is indeed a lot of mystery around chemo. Chemo is often now bolted onto other drugs which makes it even more puzzling.
And ive had a load more chemo in the 4 years and for some reason never lost an eyelash or eyebrow. Chemo is my friend and for all the irksomeness of it, its been a miracle drug.

My holiday.
Thank you so much for your kind and reassuring words. I cant link as on my phone but to know you wear the T shirt and drink out of the mug has been so helpful.

I have this inner psychological thing where I feel I have to be one step ahead of the cancer and treatment. To walk behind the treatment side effects and cancer makes me anxious because my fear of 'is the beginning of the end?' kicks in. And on days when I feel bad that feeling is activated. To walk alongside the chemo and cancer makes me insecure because it can 'grab' me. To be one step ahead is my best option. Working, exercising, being 'normal', looking well, participating. It gives me some reassurance that ive some leverage. Yet Im also fully aware its all out of my control.

But I am living a life of pretence. Being 'ok and supportive' of others is down to my assumption of their expectations of me. I dont want sympathy or people to pity me. For the 1st time in my life I am an over achiever.

Ive just remembered one of M and S's friends died of breast cancer last month. She had it 4 years. When I offered my sympathy M told me 'she didnt really look after herself like you do. She wasnt active'. He actually blamed her. I called him out on it but I didnt unhear it.

The holiday.
I am going to take advice and spell it out to S. Youre right, I want to go. Not going will mean staying at home cleaning. I will find the words to switch the narrative and if my boundaries are pushed, i will hold on tight. You have all provided me with so many great sentences and words to use that are non defensive and non threatening. I need to provide the information to S so she can decide what she wants to do. Im not there for her.
Its going to take some courage from me. I rarely express my needs. I even people please the oncologist.

Thank you again. I will let you know how I get on.

Hi @Greyandrare123 I'm so glad you are planning on still going, don't let anyone railroad you into things you don't want to do.

Re the Macmillan workshop, they hold them in various hospitals, if you do a search on demystifying chemotherapy and the name of your hospital it should come up with some contact details.

Ooh I just got my invite to a three day Cancer Lifeline residential in the autumn with vegan food and lots of meditating. DH looked appalled when I offered him the chance to come and offload about being my carer throughout so I am going solo. I shall either take sketching things or a knitting project. It will,be a week after I finish Cape too so perfect timing for a meltdown 😂

Topofthecliff

Your post made me chuckle. My husband would have reacted the same way and any meditation will be an nap or pre nap for him.
Scheduling in meltdowns is always a good thing. I aim to have at least one per cycle.

I'm so very glad you're going. You deserve and should have a holiday. Just like I'm sure your mates do, and no reason why they cant fall in with you or if they cannot meet up after the strenuous stuff. You set your agenda. You can only do what you can do etc and they need to know that.

I had my first Boob MRI scan today..well I do think I'm possibly a bit wimpy. Hated it. The pet scan last week was a doddle in comparison.
There is a reason I have laid on my front for years. I was very conscious of the fact my rather large bottom must have been very close to the top of the scanner and if they pushed the switch to slide trolley in further by accident..I may have been stuck.
One of my favourite phrases has been it's all gone tits up, and today I just kept on being reminded it's really tits down and in a tunnel.
Only pressed the switch once when line for contrast started leaking, they were so sweet. Kept on going which is just as well as I'm not sure could have repeated today for m start. Note to self take the very out of date diazepam sooner..started kicking in on the way home...
Done now for a little while , and I did it. I get very claustrophobic but I've got this.

Should have said reason haven't laid on my front!!

@Greyandrare123 Get your space back. Don't let them push you out of your holiday with their demands and ideas. Send them a message saying sorry but I can't make any plans whatsoever as this is my stress free time in Wales and I won't be making plans on how to spend my time.

@Greyandrare123 I think it’s so important to be who you are and not conform to other people’s idea of Cancer Patient - it sounds as though your friend has some strong preconceptions of Good Patient and Bad Patient and I can see how hard it must be to fight back. Well done for sticking to your holiday!
My echocardiogram was all fine and it was actually quite interesting looking at the chambers and arteries and so forth. My field is literature so I know absolutely nothing about the mechanics of the human body! But this means that my first chemo is definitely happening tomorrow. Am basically in denial.

@Florabritannica I've got my first one tomorrow too.

I'll be thinking of you. Are you taking anyone with you?

4 day's post surgery. No wonder it hurt so much tonight. I took the laxatives instead of the painkillers!!😂😂

@TwigTheWonderKid Yes, my husband’s coming with me. Something of a mixed blessing as he is so determined to charm the nurses. What about you?

Good luck tomorrow @Florabritannica and @TwigTheWonderKid

Thank you @clash!

@nappybrained i hated the breast mri too, I will do anything to not have another! Good luck with first chemo @Florabritannica and @TwigTheWonderKid x

I think John Lewis do very good big pants with plenty of movement and coverage in soft cotton. And not expensive

@Scandimandy Ive been thinking the same but I guess hard to escape.

Yes, my husband is coming too. Am only allowed to bring someone to my first session though. Guess I'll be able to catch on my reading next time.

I think I’m allowed to bring someone to all my appointments - I’d better check though! I seem to remember them advising me against driving, but I might be making that up.