Change to routine... how to cope?

[Leigh65]

Hello all

I used to be the spontaneous type, always heading off and having adventures. I travelled far and wide, sometimes alone, and used to enjoy the hot days of summer on various Greek beaches as well as wandering around in a host of foreign cities. But that is the old me. I am still coming to terms with the new me who is unable to do these things, mainly due to low energy levels and various health issues that include Chronic lymphocytic leukaemia ('CLL') (but also extend to things like hypoglycaemia, which I’ve had for thirty years, but which seems to be more challenging of late).

Am currently psyching up for a long and very imminent trip and really fretting about it. I do not want to be this person! I want to be excited and ready and up for it. Sadly, I do not feel this way. I have a lot of structure in my life and have found what (for now) works for me. I have my exercise routine and my food routine and know how to pace my week. Usually, we have gentle hols not too far away (citing lack of money) but this one is a bit different and means a lot of travel. Am feeling I want to run away, in the opposite direction.

I am worried about my sleep (not getting any), about early starts that I cant manage, about not finding a bathroom (my god!), about not being able to get the ‘right sort’ of yogurt (my blood sugar mainstay), about having to take my supplements at different times. I am so very embarrassed about all this, because it’s not really who I am, not deep down. In another life, I was jumping on planes and lying on beaches and not worrying about any of it. I cant believe how much things have changed, although we are talking 20 plus years ago…

If anyone understands or has faced similar, it would be helpful to know how you’ve managed. I feel very silly and rather humiliated really. But it is what it is and I need to deal with it.

Thankyou!

[Duncan]

Hello there @Leigh65, you popped into my thoughts yesterday as I was wondering how you were doing, and now I know! Although I wouldn’t say you have any need to feel humiliation for sharing what you have. It seems brave to express how these bloody cancers can affect so much in our lives. It’s so rarely a case of us skipping off merrily into our futures after the kinds of diagnoses we’ve had.

What you’ve shared really resonates with me on many levels. Not long after I was diagnosed with Polycythaemia vera ('PV') I hoped to travel back home to see loved ones and feel their nurture and care at such a scary time. I could not plan it! My brain fog from starting chemotherapy was so bad that I just could not keep the different parts of my travels clear enough to figure out how to see everyone, where to stay, routes via public transport… I ended up not traveling, and now I can’t travel long-distance anyway due to all the issues at the borders here, so it all can make me feel a little trapped. It really got me down and it was pretty depressing, imagining what I could no longer manage when, like you, I used to be able to make and undertake plans at the drop of a hat!

That is all to say you are not alone in these sorts of changes to self. What if some of these changes can be helpful for who you are now, or how you are during this phase while you continue adapting to your diagnosis and changes it causes? I know that many people can experience these shifts in self even without blood cancer and all its shock and related changes, from moving region, adaptations with work, shifts in relationships… Could the diagnosis itself have stirred up so much that it’s making you reassess stuff you took for granted? This is all big stuff to think through. Thinking can take up a lot of energy! Ugh fatigue!!!

Me from 20 years ago would have been like yeah I’ll sort out finer details once I get ‘there’ (wherever there may have been), but current me prefers routine, familiarity, calmness. It’s funny, my dog is making me more accountable to his routines and it causes me to chivvy myself along so I can meet his needs. I wouldn’t be able to just nip off at the eleventh hour on a solo jaunt these days. Maybe his pace and my responsibility to him is a way for me to slow myself down too and think more about basic needs, or more specifically what I don’t need.

That idea of “another life” has also been popping up a lot for me too, like what could my parallel existence be full of, how would life be without these stupid illnesses, where might I be if only I’d done XYZ… It ended up inspiring some writing, and I know you’re a writer too. In our imaginations and creativity we can do and achieve whatever we want. It’s quite the expansive invitation to me to imagine my heart’s desire. In my other life I can play out scenarios to see if they’re even important to me anymore, or if this new phase I’m in needs them. It can be quite fun, and surprising, where we can go without even leaving our minds!

That doesn’t answer your worries really, but I wanted to say I understand about not feeling like oneself, and maybe to say it’s okay to feel differently now after so much change has been foisted upon us. If you’re not feeling like travelling right now, how does it feel to delay it or imagine a different sort of trip altogether where you get to maintain some of your routines but maybe adapted to account for any time differences or anxiety about the destination? These days I do a little emotional risk assessment when I plan to go away and make sure I know where the nearest hospital is (and vet too), check for local places I know I’ll find food I like, and check out public transport for getting about at my own pace. I let myself make plans in advance and I let myself change or drop them depending on my energy levels in the moment. It feels quite freeing!

Anyway, as usual I’ve gone on a bit, but please don’t feel silly as I bet many people here know much of what you have described so well. It’s really poignant @Leigh65 to feel a kinship with you over these life changes that we never asked for!

[DuncanB]

Hi @Leigh65

I’m sorry to read about your worries about your trip. It really resonates with me.

I like you thrive on my routine.

When it’s different I’m surprised how long it can take to bounce back.

This week for example wife and I had a day out in Inverness. Journey we’ve made regularly over last 2 and a half years.

Tuesday we went down no hospital stuff. Clothes shopping for my wife.

Got what she needed nice lunch and walk along the river before drive home.

I enjoyed for sure but by end of the day rest of this week ready for bed and sleeping well. Even napped during day for over an hour on Wednesday.

Reminder for me that I’m different now in terms of what I can do.

I’ve not been away since Transplant but planning a night away to see how it goes.

All my numbers look good right now but definitely happy to take small steps

[DuncanB]

Great response @Duncan to @Leigh65 post.

Thanks for taking the time to reply

[Duncan]

Your comment about taking time to bounce back is so true for me too, @DuncanB. When I have an eventful day of activity I’ll need rest the day or so before/after, especially with busy places like gigs or hospitals, or if it makes me late to bed. By the way, your day out in Inverness sounds like my favourite type. Made me think of pootling around the Lanes/North Laine and along by the West Pier—I’m sure there are far fewer tourists down for the day where you are now!

[Spangleystar]

Oh @Leigh65 I hear you! I’m only 6 months from diagnosis (Multiple Myeloma) and awaiting ASCT in May, but the routine changes I am making now I need to be able to protect and access wherever I decide to go (once in remission and out of my 100 days post), this will be annoying for my 12 & 14 year old boys for sure - as I was all for anything before, trying to create life experiences for them!

You say this trip is a bit different- is it in the sense that it would be hard not to do (family, significant event etc?) because choosing not to do something is ok. It doesn’t mean you are giving in or giving up on the person you once were - it could just be that the timing isn’t right, or your intuition telling you not to be far away from home and with everything going on in this crazy world right now who could blame you!

On the other hand if it is something that you would be super sad to miss out - you could try the circles of control technique to navigate your anxiety. Let me know if you’re not familiar and I’ll send you some links.

Wish you well xx

[DuncanB]

It’s amazing how a change to routine impacts us @Duncan

Definitely fewer tourists in Inverness at this time of year.

[Sparklesummers]

Good evening everyone,

It seems this is quite common for me too, in my old life I had horses, worked full time and had a baby and had oodles of energy and my life was hectic it’s completely different now and I thought one day I might get to do the things I love again own a beautiful horse and gallop across the fields but who was I kidding and that was a such a long time ago now anyway. At first I was diagnosed with hypothyroidism in 2018 which explained some symptoms, then in 2021 I thought it was perimenopause maybe still is but in January of this year diagnosed with Myeloproliferative neoplasms ('MPN') Essential thrombocythemia ('ET') some of symptoms cross over and then theres also medical gaslighting so you think you are going mad. I am really struggling at the moment as so desperately want to feel myself again but literally completely exhausted after doing anything. I literally did some redecorating in my house and it has floored me. My husband doesn’t understand it, he keeps saying “you look so well”, even though I am so tired and my body feels like it has been trampled on by a herd of cows, I don’t sleep well at night either. I have booked a trip to Spain to cheer myself up and go in a couple of weeks, going solo for headspace and as life is too short but that’s causing stress now too as my husband doesn’t understand it even though I’ve already had some solo trips previously. I’d rather be on my own then have to constantly explain my feelings to others who don’t understand, does anyone else get that??? It’s hard to get your own head round when things just aren’t the same as they used to be but a relief to know the reason.

[Spangleystar]

@Sparklesummers
I think I’m the only person on this forum who doesn’t hate hearing ‘you look well’. It’s all make up but it means I’m better at it than I thought

I’ve got many other triggers though - for example getting regular text messages just saying ‘how are you feeling?’ It’s like the minute I may be living in the moment and focussed on something else - someone wants to remind me that Myeloma can invade every second of my thoughts.

I totally get the need for headspace. I’ve had to talk to my family and friends about what I need from them and really importantly what I don’t need.

So it’s always tricky when it’s your husband and he’s likely trying to be supportive but just getting it wrong. My exec coach talks about contracting, essentially setting boundaries that you both agree to. So this should cover the things you are not ok with. Example, ‘stop telling me I look well, it doesn’t mean I am well and I find it upsetting explaining that on a regular basis’. You also need to set the block out times - Example: ‘I’m not up for conversations on this between 8pm and 8am’ Then importantly is ABC - Always Be Contracting, this means you can adjust the scope as new things emerge.

Your husband is likely struggling with this too. He’s probably worried that you are shattered after redecorating, but planning to go abroad on your own, how can he help if he’s far away? He may feel shut out at a time that he feels you should let him in. Opening this contracting conversation could help you both be understood and to get the support you need.

I really hope you enjoy Spain, I’ve had to cancel our family holidays this year to Rome and Santorini as I’m not allowed to fly for a while, so it is important that you can do the things you feel will benefit you, while you have the opportunity.

Hope this helps xx

[Sparklesummers]

Thanks for your reply. I will try your suggestion about contracting and maybe set some boundaries. I had an OHU referral for work purposes and the lady said I would have good and bad days and to listen to my body and act upon it, so when I feel good I cram in what I have planned to do and decorating is kind of an outlet for me in the spring months as I see it as a refresh and I was so pleased with my daughters/spare room as she has recently left home, my husband then goes and sleeps in it as he doesn’t like me much which has annoyed me as I wanted to keep it nice., I agree he is probably struggling with the new version of me but he tends to go silent or not really understand me but I am still unsure myself as I also have Mum to look after who has lung cancer for the last 12 months so it’s a double whammy as carry a lot of emotion for her too as I am the only caregiver to her as there is no other family on her side to help. I find venting on here helps.

I do hope you can get away as its good to have a change of scenery but he is questioning why I don’t want to go in the UK but I just want to challenge myself and go somewhere pretty and warm but I am nervous due to the Essential thrombocythemia ('ET') aspect about flying but I find I have increased anxiety these last few years anyway due to one thing or another.

Maybe you should go to Cornwall if your in the UK I used to live there it’s so nice especially if you get the sunshine, there’s some lovely walks and nice beaches where you can make a picnic and watch the waves, bodyboard or surf if it’s your thing.

It’s an adjustment period I think and some days I feel more energised than others, I think I’ve had it a while anyway as doctors did nothing in 2024 about high platelets so it got missed it. I think when you have a cancer or chronic illness diagnosis it’s a scary place and time tbh.

Have a lovely Sunday xx

[Spangleystar]

I hope things improve for you soon @Sparklesummers
Thanks for the suggestion - I’m fortunate to be 30 mins from the Sussex coast, so get my sea air fix! Because of where I am in my treatment and immunocompromised there’s a lot of things I can’t do for the next 6 months and swimming is one of them - more’s the pity! Once I’m the other side of my ASCT + 100 days we’ll be heading somewhere different though by land or sea as I can’t get on a plane for up to 12 months.
Happy Mother’s Day! X

[Leigh65]

Thank you for your thoughts @Duncan @DuncanB @Spangleystar @Sparklesummers They are much appreciated!

The trip was planned when I was having a good day! And iI magined it all being if not easy, then quite doable. Since then, I’ve also been hit by a few knocks (health and otherwise) and am not feeling at my best (at all).

Anyway, the trip is booked and we will travel off this week. My DP is trying hard, although hale and hearty and a quite a bit younger than me, so there’s that to deal with too! I’m usually very keen to go away but as I say, this one is much more complicated and I’ve not been able to think too much about the wonders. It’s not the being there, which should be a gift, but the ‘getting there’ (and back) that’s addling my brain. I too have very specific bedtimes (I dont deviate), have a special diet and need to take exercise every day. I know that if I get to bed later, it has a real knock-on effect, and so its not just a singluar atomised thing, but the rebound effects. God,I sound a nightmare and as I say, I would not choose this if I had the choice… AT ALL. I am also very chary re booking anything two days in a row in my daily life. It’s been difficult for friends to understand this, I still think they don’t get it. It’s hard, especially if a friend is visiting from afar… but I simply run out of puff after a day of socialising or being out in the world and am forced to recalibrate.

Yes, the locus of control is really wonderful, I need to remember that, it has helped before. Thankyou SpangleyStar. And everyone else.

[Spangleystar]

Best of luck with it all @Leigh65 - I’m keeping everything crossed that it will be a million times better than you are imagining, make sure the airline or any travel operators are fully looped in with where you are at so that you feel well looked after xx

[Sparklesummers]

Yes keep me updated with travel too hope it all goes well as it will be my first time on a plane with my diagnosis, do I need to advise the holiday company as I’ve sought my own insurance via Staysure. I thought you just get on board and hope for the best tbh.

[Sparklesummers]

For info I don’t know how to tag anyone into my responses so my messages might not make any sense so I must apologise.

Not living far from the sea has its benefits too or any semi rural areas where theres fresh air and places to walk without the crowds is a bonus. I’m luckily as theres a few nice walks near me too which helps clear my head.

At least we are getting more daylight and heading into spring now we just have to hope for a bit of warmer weather soon.

[Willow]

Hi there @Sparklesummers To tag someone just put an @ sign before their name like I have done. Willow x

[Sparklesummers]

@Willow Thanks it worked xx

[DuncanB]

Oh the you look well comment @Sparklesummers

My response has always been so do 95% of the people I meet in the Haematology Clinic.

It’s really difficult for others to understand as most(probably like ourselves before diagnosis) don’t really understand blood cancers.

As we all know it’s what’s going on inside our body rather than what can be seen that really makes it different.

Sorry to hear your husband is struggling to understand and maybe his way of dealing with it is to put it into his nothing box.

If you Google mens brains you will find links to some funny but probably very accurate videos on differences between men and women’s brains.

@Spangleystar has suggested some good strategies from the world of coaching that are hopefully helpful.

Another thing from coaching that might help is the idea of making requests rather telling.

So for example you might say something like Can I request that we make some time to just take it easy.

Hopefully get the idea and you have a few new tools to help

[DuncanB]

Hi @Leigh65

Just another thought re your trip which you may have already considered.

When in the airport and on the plane consider wearing a face mask and encourage your other half to do the same.

Both my wife and I do that when going into shops or cafes. I usually say my immunity is compromised which it is if I get funny looks.

I’ve found that in cafes or restaurants staff think about where they seat you and if they can put you in table furthest away from others.

In the airport and on the plane it will hopefully mean others will keep their distance.

Hope that helps

[Sparklesummers]

Hi All,

I have finally had my little trip to Costa Del Sol since my diagnosis in January which I was a bit anxious about as travelling solo. I think I managed it well as listened to my body and rested if needed to. I managed to get insurance for a reasonable price so I knew god forbid anything would happen I would be covered as there is a lot to think about. I chose Spain as only a short flight time. I felt quite well and not out of sorts for a change but I emptied my mind of everything and relaxed and the sunshine helped. I didn’t wear compression socks out but home I did and I think these made me worse as my feet swelled and felt stiff initially but think they might be too small for me, will the NHS issue correct sized ones if I want to travel as I have to have something to look forward too. On that note I haven’t had a follow up appointment which should have be arranged by 20th March so I was informed today when I rang them, it’s now 14th May which is shocking considering they did nothing about my high platelets in 2024 has anyone else experienced delays in follow up appointments. I am just so glad I went away rather than worry about it all. I hate the feeling of having an illness and having to think about plans etc. It’s so true that your health is your wealth. I guess we have to navigate this thing and live as best we can. Tomorrow is not always guaranteed.

I hope everyone else is ok and made the most of the sunshine and enjoyed Easter xx