The Great Recovery part 2 - After Cancer treatment what next?

[TopOfTheCliff]

You may have finished treatment for cancer, be NED or in remission, or it’s just a lull between storms. You don’t want to dwell on the past but look forward to the future. You know you need to eat well, get fitter and pick up the strands of life again. This is the thread for you with fellow travellers. Join us!

There is the General Cancer thread for those in active treatment:
https://www.mumsnet.com/talk/general_health/4969445-cancer-support-thread-92-christmas-happy-hour-at-the-patience-inn-7pm-tonight?page=10&reply=132553156

And there is the Stage IV thread for those whose treatment is ongoing:
https://www.mumsnet.com/talk/life_limiting_illness/stage-iv-cancer-incurable-roll-up-roll-up-this-thread-is-for-you?reply=132555664

😂Anyone want to try to join me and @TopOfTheCliff in the junk food confessional? DH made me steamed Asian seabass last night which maybe has helped me atone!

Yes I think if you just want a nice photo of yourself and some tulips its perfect if somewhat crowded so you won't be alone in your photo. It seems you dress up like a woman in a Monet picture and then put it on Instagram, accompanying small girl is optional, hats are required. Unfortunately Instagram for some unknown reason won't let me have an account so sadly can't join this and not sure there's too much demand for post chemo middle aged women pics😂We were hoping for a 2 hour walk but its really a take a photo and have a quick walk and grab a pancake type place. But that took all of 15 mins.

Re food confessionals I do eat shortbread though I did find on the no sugar MN diet I couldn't move and felt very ill and shaky whereas like this if I stick to 1,200 calories a day I still lose a pound a week and can have energy to swim etc and feel well. So far today I've had brie, purple raddishes, 2 figs, 1 shortbread finger and 4 cups of tea and 1 lime juice and sparkling water. Rather ahead on drinks and still have too much tea.

I am still trying to get this MRI and having so much trouble, can't get it privately as nobody will do referral letter or via NHS. Just trying both again but everyone just passes it round. I do have vaccines this week, not sure whether to get another covid one or not. I've had 3 so far, the first two made me so ill, think I was allergic to them as got all over rashes but I was told it was all in my head until the 3rd one when they gave me Pfizer which was fine. Think I last had covid Sept 22 but only the first time I had it I was very ill and I also tested positive for campylobacter and it was likely that making me so ill.

@Penguinsa I have had 7 Covid vaccines so far. 2 AstraZeneca 3 Pfizer BioNTech and 2Moderna I think. I seem unharmed and have only had Covid once so far while I was on chemo and had Paxlovid which helped.

@FairyWren7 Is it the intensity of the work or the quantity that is overwhelming you? Could you drop back to minimal hours to allow you to recover? It’s not sustainable to keep pushing yourself as you will become unwell/unhappy. Your recovery is too important to jeopardise it now.

Oh god I have to confess a slight addiction to Toney chocoloney salted caramel bars...fortunately the only place that sells them round here is my gym (!).

I have one on a Saturday when I do quite a big workout and a lot of swimming then treat myself to a cuppa in the lounge after.

Other than that I've not got much of a sweet tough but am an absolute bugger for pizza...

Had a really good PT session today - first time I've felt he was going too easy on me! I'm knackered now so he's absolutely right though. He knows I struggle with pacing so is quite strict and I think as we've worked together so long he can tell when I'm pushing too hard. Like he says, there's no gain in hammering yourself one day and then writing yourself off for the week.

Have til Sunday to decide what to do about the kayaking in Norway. Also have a meeting with oncology on Thursday so will see if they raise any concerns.

@dotty2 your garden spot is gorgeous!

Ahem yes junk food. I lost a couple of kilos after my hysterectomy and I’ve put a little bit back on but trying not to let it all come back. I started baking ‘for the kids’ but it’s hard to resist the temptation of ouch it feels like my vagina is trying to fall out I’d better sit down and have a chocolate caramel slice. And then I can’t walk too far due to worry about my pelvic floor. Yes I am going to do something sensible like getting a referral to a women’s physiotherapist rather than just eating cake.

@ClashCityRocker it is remarkable how often the online Sainsbury’s shopping arrives with one of those Chocoloney bars perched on the top of the basket. How ever do they get into the shopping order? Favourites you say?
I totally agree about pacing and not trashing yourself. That is the purpose of my strategy meeting with the PT tomorrow.
Please be brave and carry on assuming all will be well for Norway. I really want to go and you will be carrying the flag for all of us!
I am up early today to get back home from DMs house. Ribs definitely mending now. Love to all x

Hi all, feeling a lot better after my major wobble. Clear sign that I need to be careful. Which I have heeded. Boundaries back in place and head screwed back on. I’m no rookie, I know that education takes up every little bit of space that you give it. So now I am going to be ruthless about my time. Time is after all the most precious thing we have.

I have a clear plan. I will keep going as long as I can. I will get my reconstructive surgery done and try and build up some savings. I will get my citizenship sorted out - so I can come and go as I wish. I will apply for and finally do my MA. I have a house in the UK that is nearly paid off so I will have an income stream in a year or two.

I’ve cooked a nice curry for dinner with loads of veggies, have done my exercises and have got my art class this evening. The GP has given me Valium! I may seek out some medicinal cannabis at some point.

You can see how easily people can just drop out of society and get dependent on drink or drugs. There’s someone living in a tent in the park down the road. It just takes a series of things going wrong.

But this is not going to happen to me!

Doughnuts are like crack - @TopOfTheCliff be careful!

@FairyWren7 - I'm pleased you are feeling so much more positive today. It is such a comfort to have a plan. And I know what you mean about how fragile our mental and social stability seems sometimes. I felt really down yesterday - everything went wrong all day from waking up with a headache, to forgetting to give DD2 her bus money, to work and IT hassles, to starting cooking only to discover we didn't have some key ingredients...I eventually managed to arrest my downward mental spiral by watching gentle TV comedy with DH and DD and going to bed early. But so many people don't have the safety net of a kind family and a peaceful, comfortable home. Counting my blessings today.

I had a really good swim this morning and managed 48 x25, which is good for me. I find it really interesting that before cancer I felt best when I started exercising and gradually got more tired. Now I feel stiff and slow for the first 10 minutes or so of whatever I'm doing and I think I'll never be able to keep going, then it gets better. I don't know if it's the post-operative soreness, or the hormone treatment and other drugs, but if it's a common experience, it must be so easy for people to get discouraged and conclude that they just can't exercise any more post-cancer.

That’s good to hear @FairyWren7 and good that you are prioritising yourself. I laughed at the idea of crack crème donuts. I don’t think I have an addictive personality as I can easily give up alcohol, online games, painkillers and even cake when I want to. I smoked a cigarette once and enjoyed it but never went back for a second. It’s just mustering the desire to be slimmer and putting the plan into action that takes effort.
Today I have been mastering Boat Plumbing. I met a very helpful man who talked me through everything I need to know to fix my leaky boat water supply. He gave me most of the bits needed and sent me off to screw fix to get the rest. After lunch I shall go and tackle the job which will make me hugely proud and pleased if I can fix it all myself. Ellen McArthur eat your heart out!
My Ribs are mending nicely as you can gather.

Well done @dotty2 for stopping the spiral. It’s like having an emergency button to push when things go wrong!

Good to hear you are on the mend @TopOfTheCliff and your plan sounds great @FairyWren7

My kitchen cupboards are full of half eaten packets of chemo biscuits so the healthy eating is not going brilliantly, and I'd quite like a doughnut now....

I'm gradually starting to feel a bit more energetic though my joints feel stiff and sore in a way they didn't previously. I feel better after some exercise but agree it would be very easy to be put off.

I'm waiting for a date for port removal. From anyone who has had this done, did you feel okay to drive afterwards? I won't be having sedation.

That's great you have a plan Fairywren

Just been swimming again and came back and DD came to talk to me and then I heard a thud and I said DD what was that noise (thinking it was Floof) and she said it was your boob falling off the bed. Then what is that thing called. 😂It was my prothesis which had just put on bed falling off, didn't realise had done that but just had a bath and its a swim one so always wash them with me after swimming. But have two of them.

I have a photo of me now on computer to try pre cancer to try and motivate me to lose weight from cancer treatment and it helps but realising now my BMI must have been some way under 25 when it was taken, maybe 21 or so so will have to keep going. Currently at 25.9 so getting there.

Today has been a good day but tiring. I started with a boat launch which went well. Next I met my personal trainer for a strategy session to work out how I should approach the next stage in my recovery. My ribs are about 75 percent better and I can now cough and hiccup without wincing. The plan for now is for working on walking strength and eating healthily and doing gentle yoga She is going to monitor how much I take on and tell me when to slow down and rest. I am not to overdo things and injure myself again. I did some housework and met a friend for a cup of tea and now I am having a restful evening. DH is home but out on his bike!! I am feeling positive about the next few weeks especially as it has been sunny today. How many times do we have to pick ourselves up, dust ourselves down and do it all over again?

@TopOfTheCliff too many, but we keep going and will get there in the end!

It sounds like you have a good, sensible plan in place to get you to where you want to be. I'm glad your ribs are feeling better too. I need to reincorporate the yoga - my hips feel like an 80 year olds in the mornings! Part pelvic radiotherapy and part menopause I think.

Oncology check up and catch up today. Hopefully all will go well and touch wood I will be done with medical appointments for the next three months...always feel slightly anxious going into the appointment but hopefully there will be nothing to cause alarm. Think this will be my last one before my twelve month scan in July.

It turned out that ouch my vagina is trying to fall out was actually ouch I have a bladder infection. So, yay I don’t have a prolapse, boo I’m on antibiotics. I’ve only been on them 24 hrs and I feel so much better. I went from being feverish and tearful on Tuesday night to today heading out for lunch with the family. It’s Anzac Day so we get a public holiday to honour the fallen by gambling on coin tosses in the pub.

Hope your checkup goes well @ClashCityRocker.

Hope it went well @ClashCityRocker - I have one next week too.

I'm in a hotel at the moment facilitating an awayday. I'm also on antibiotics because I have cellulitis (or something like it) in my foot FFS. How ridiculous! I'm just about to go off for a drive and get a salad from M&S to eat in my room. They invited me for dinner but I just need to be alone!

Had vaccines yesterday tetanus and typhoid and been feeling rubbish since then, hopefully will pass soon. Got an art gallery, drinks and dinner on Saturday so hopefully its just 48 hours, have a rash. Normally don't react to those.

Still nothing from hospital on MRI but scan UK are saying I can book via them as its not active cancer. So might have to do that, annoying though as cancelled before and lost £50 as hospital said they would help but its 2 months on now.

That is exasperating @Penguinsa it does seem you are going round in circles with the MRI scan.

@ClashCityRocker hope all went well.

@SierraSapphire what’s wrong with your foot? Cellulitis sounds odd unless you have awful veins.

Tonight I sailed a race in my new boat despite the creaky ribs. DH came too and although we were last it was beautiful and everybody was pleased to see me out. It was freezing cold but there were skeins of Brent or Canada geese flying in at sunset. So lovely! I’m very happy.

Maybe it's not cellulitis @TopOfTheCliff but online GP thought infection maybe coming from athletes foot 🙄. It was really painful on Sunday, the pain's now gone but it looks a bit red around some broken skin. I've been overworking and really knackered. It's a bit of a reminder to look after myself better!

I'm so pleased you got back on the boat, @TopOfTheCliff - that sounds magical. I had a nice walk back from swimming early this morning - the sky was blue, the birds were singing, all the trees are bursting with new leaves. I can walk to the pool through the local cemetery which is a bit of green oasis.

Sorry about ongoing scan frustration @Penguinsa and your foot, @SierraSapphire

I'm rushing to get some work finished before heading off to spend the night in a treaty hotel on the way to a family thing tomorrow. I could have sworn I booked a Premier Inn ages ago, but I couldn't find the booking, but we got a last minute bargain this morning on somewhere much nicer. I've been out two nights this week and had a work trip too so am knackered and will have to try hard to stay awake for a bit and appreciate it!

Ouch all round for the various infections and ailments.

@penguinisa that bloody scan is turning into something of an ordeal! Hope you get seen soon.

Well, the check up went fine although I was a bit put out that it wasn't with my usual consultant but a gentleman instead. Fortunately, I'm quite blase about who goes rooting about my private parts nowadays but I did think that a heads up would have been nice, particularly for patients that may have suffered trauma in the past. Hopefully with a bit of luck and a fair wind I can park any medical stuff til July when I'll have my twelve month scan.

Very pleased to hear you're back in the boat @TopOfTheCliff! Hoping to be in the same boat (well, not literally!) very soon myself as I have made a decision and am going to Norway. I rang the organisers and chatted it through, they have tandem kayaks which I can go in if it gets too much but based on what I'm currently doing, they feel my fitness levels would be fine.

My thoughts were that if god forbid my twelve month scan doesn't come back clear and I need more treatment, I would be kicking myself for passing up the opportunity. Now it's just keeping things on and even keel, building up myself gradually and not pushing myself too hard, resulting in injury. My PT will help with that, he's worth his weight in gold.

“Now it’s just keeping things on an even keel, building up myself gradually and not pushing myself too hard, resulting in injury.”
That should be our thread mantra @ClashCityRocker but it’s so hard to stick to! I am delighted you are going to the Lofoten Islands.

Today I had a physio session but I just lay still while he treated me with his red laser. The ribs were horribly clicky and impressed him! I clearly did a lot of damage. I then decided not to go to yoga this week but just to rest up. I am being so sensible!
DH has just had to cancel a big event he was organising as somebody screwed him over. He is having a bad time. It’s times like this show up true character and he is a goodun.
Sending patience and strength to all xx

Maybe getting back in the boat should be our next thread title!

That's good news @ClashCityRocker and also your decision about the trip.

I'm on the M1 having a sandwich and cup of tea on the way home, heavy traffic initially but hopefully okay for the rest of the way. This weekend will be the first for nearly 2 months that I haven't had to study or work - yay!

@TopOfTheCliff glad you are back on the boat.
@Penguinsa hope you get the scan sorted soon.

I’m improving a bit although the increased medications continue to make me a bit jittery. I genuinely feel like I went a bit mad there for a few days.

Anyway I’ve told management that I just want to do my three days and they have to explain to me what they actually need me to do! I’m finding it so difficult it’s the same old stuff. You want to do a good job so you fill the gaps. Last night I was writing model essays so the students have examples and this morning I’m planning an activity.

I am going to meet my friend today for shopping and lunch.

I feel really tired.

I had more saline put into my expanders this week. Good news that the tummy scan has come back saying it’s good to use for the diep. I’m now on the waiting list, they think at least six months. My aim is now to get fitter. Leg pain is less as the physio is starting to work. Doing light weights on arms at home.

The public team are so much nicer than the private - treated with respect and care. I wish I’d gone to them in the first place. But my GP referred me private as I had private insurance. The system doesn’t work. People with cancer aren’t in the mood to go Dr shopping - there has to be a better way to make the system more user friendly.

I’m also considering exploring Buddhism a bit more. I feel like I need to explore belief systems a bit.

It’s a year today since I was in the ICU unit with a pulmonary embolism. Anniversary of my almost death day… It feels huge.

Sorry, this is a bit of a brain dump… not many people ‘get me’ anymore!