The Great Recovery! After cancer what next?

[TopOfTheCliff]

This thread was suggested on the general Cancer Thread
https://www.mumsnet.com/talk/general_health/4895824-cancer-support-thread-90-still-the-best-threads-no-one-wants-to-be-on?page=15&reply=129923637 as a place to come when you are recovering.

You may feel your treatment is over and you are cured or at least NED, or it may just be a lull between storms, but you want to step away from the daily grind of chemo and radiotherapy and look to the future.
Most of us come out the far side of a cancer diagnosis battered and unfit and probably overweight from the steroids and the comfort eating. Where do you start? How long will it take ? Should you diet to lose weight or try to exercise more? Then there is the huge mental hurdle of putting Cancer behind you and not worrying about recurrence with every twinge.
I am a veteran of the Cancer Thread having had breast cancer twice in two years and I managed the recovery after cancer no 1. Now I have to do it all again but in good company I hope.

Wishing your SIL all the best @Remaker.

Good luck with your interview @FairyWren7

@Remaker the learning to drive was definitely more stressful, although obviously you do worry about them.
It's great though that she is now able to drive and can take me to places if need be (although she disappeared to uni just as I needed her to take me to chemo, and the only one time she was at home she had a horrible infection so I didn't want to be in the car with her!) She can also help out with her grandma, although having spent £350 on her car in the last couple of weeks on nothing much, that is also a downside!

Ooh you are giving me flashbacks over teenage drivers. My DD1 was a nightmare tailgating the car in front and I was banned from shrieking by DS. They are all good drivers now thankfully.
I am trying to get my DN launched with a car. DSD has emigrated so I bought her pretty blue 15 year old car off her and am getting it serviced and MOTd for the DN/goddaughter.She is a sweet girl who lives in a remote rural place with her parents and doesn’t work. If we can find a kind and encouraging driving instructor I am hoping to get her independent soon. She needs to spread her wings a bit and I haven’t been a very generous godparent up to now.
I am surviving this surgical recovery reasonably well. I am sore and bruised and not sleeping well but time is passing and I can do more each day. I just have to endure it for a while, and we are good at that on this thread.

Good luck @FairyWren7

@SierraSapphire thanks got your comment. That makes me think I’m on to something with breast stroke issue. When I just kick with the float something seems to move in my lower leg…

I avoid getting my head under (yes I’m one of those swimmers), I wear glasses, used to wear contact lenses so got in the habit of keeping my head out!

The issue with crawl for me is the lymph node removal has gone weird things to my right side and the chest expanders they have put in feel most peculiar. It feels like I have metal plates in my chest… everything feels periodically tight and strange. I think I might try and mix it up a bit and try and do crawl again. See if I can do it.

No signs of referral. They are supposed to add saline in to the expanders to stretch the skin to accomodate the diep/implants. I wonder if this has to be done within a specific time frame? Anyone out there who knows about this?

I really don’t want to go back to Mr God Surgeon (who incidentally I saw in a shopping centre before Xmas and realised when seeing him out of context that he looks like a young Colin Farrell!) but I may be forced to if the public system does nothing soon. We may have to have a family whip round again to get me sorted.. 😂

I guess I’m ready for the next bit! Or at least to think about the next bit!

Morning all. I’m excited to report that I can now roll over in bed to and from my good side. I slept okay too. I can wash and dress myself using a grabber to pull up knickers etc. Now I need to manage the expectation of the friends who want to drop in to see me. I can’t cope with sitting upright in the living room for very long. My DB wants to bring DM89 to see me too. It’s a long drive so she will need food and rest as well.

In other news we are now at 900 posts so the next thread is looming gently. Take a minute to see how far you have progressed since the start of the thread in October. I was still on my last round of oral chemotherapy and feeling dreadful. What do you hope for by the end of the next one?

Really glad to see your update, @TopOfTheCliff . I hope your recovery continues smoothly and you are able to keep the well-meaning visitors at bay.

Looking back to October, I have some definite gains and losses. On the plus side, I have started swimming again and in just a few weeks have seen my arm get much less stiff, and I can manage 1k pretty comfortably. I did two consecutive lengths of front crawl this morning as part of that, which is a big deal for me as I find it hard and usually have to alternate with breast stroke. I also think my energy levels are better overall, and I can stay up later (some of the time at least, drive further without getting exhausted etc). I have finished some challenging work projects and have also set out to find a better work/life balance this year. I have (I hope) done a good job of supporting both DDs settling into uni and sixth form. I have had some lovely holidays and days out.

On the negative side, I have had my suspected lymphoedema confirmed, which I am finding hard to deal with, and I haven't managed to lose any weight and my running stamina hasn't really improved. I am not really worrying any less about recurrence and the future. But it's never going to be all positive, is it?

Thank you for starting this thread, Top, and to everyone for the support and encouragement.

@FairyWren7 - just seen your swimming post. You could try doing some legs-only lengths with a float if your arms hurt too much to sustain front crawl?

Ooh @TopOfTheCliff its like baby milestones - being able to roll over! Great to hear about your progress.
Thank you for prompting us to think about our progress. I’ve been feeling a bit but I couldn’t even join this thread in October, as I was still in active treatment, That thought alone has made me feel a bit better. By the end of the next thread, I’d like to have better energy levels, maybe not needing to rest in the day and be doing some kind of work - but maybe not returning to my previous very stressful, more than full time role. I may have a new start by the end of the next thread.

Good idea to do a review and a forward plan Top! I seem to be in a similar place to the start of the thread. I've been making good use of my new gym and physically feel fit, and I've done lots of relaxing in the spa! We went to New York, which, at the start of the thread I was wondering whether it would happen! I also had an operation on my tonsil, so that threw me out of action for a while, work is still not where I need it to be. I'm not able to pay myself at the moment. I did no marketing or networking for nearly two years, and only really started again when we got back from New York in the middle of January, so at the moment I am not able to spend much or plan anything as I'm running out of savings. I have had some work planned for a number of clients, but one has really messed me about and wasted a lot of my time. I'm also still waiting for routine scan results from a week and a half ago, hoping that silence means good news, but you can't tell with the NHS now I don't think. It's MDT tomorrow as well, I can't imagine if they spotted something it would be an MDT issue yet, but I think if I haven't heard anything by Friday, I will relax a bit more.

By the end of the next one I would like my work sorted out so I'm not doing so much work for no money. I should also be through the first unit of my return to the Master's, and then only have one more taught unit to go. Then hopefully I will have money and be able to continue to arrange outings and holidays to make me happy!

Ooh I’ve got quite emotional now. I decided to look back at photos from the last 40 months and followed my life through the diagnosis of cancer no 1, chemo, broken ankle, surgery and radiotherapy then recovery of my strength, my voyage round the UK and DD2s wedding. Then it was cancer no 2, chemo, surgery and radiotherapy, more chemo and DD1s wedding and now my hip replacement. I’ve lost my DF but six babies have come into our lives. Through it all I am smiling and surrounded by people who love me. I’m overcome by how strong I am and how despite the utter shite that has poured down on me I am still laughing and happy. I am a bloody marvel! But please please can the universe give me and DH a break and let life be a bit easier? Surely that’s not too much to ask?

Hope things will be easier for you Top and we all have just better times now. Everything has gone well here since the thread started and hoping it stays that way. Its lovely to have such a supportive thread.

@TopOfTheCliff you are a bloody marvel, and an inspiring one. Thank you.
I will personally tell the universe to give you the break you so deserve.
For me, since last October my attempts at getting fitter and getting my life back have stalled as Dm grew weaker, and died last may- followed by all that entailed, and giving myself space to process everything.
amongst all that, and during my cancer treatment, I have had so many wonderful moments with friends and family that have filled me with joy. I have made new friends, reconnected - and now need to get serious about getting fitter to enjoy more.

Ah @thesandwich im sorry to hear you lost your DP too. It’s a tough thing to process. I think one of the positives that I take from my experience is the realisation that the most important moments in life are with those we love. Money and travel and possessions are all very well but it’s family and friends that bring joy to me. In the coming years I shall prioritise those times.
Today I am going to go out to coffee with DH. I don’t see why I shouldn’t and he will enjoy it. Leg is not too swollen or bruised and I slept well. Trying to rest up despite temptation to do more.

You are amazing @TopOfTheCliff, so pleased that your recovery is going well.

@thesandwich sorry you have lost a parent as well. Lost my Dad in October 2022 and tbh was still trying to process that when I was diagnosed. Agree about the wonderful moments with friends and family @thesandwich and @TopOfTheCliff , I really enjoyed Christmas this year for that reason.

Thanks @TopOfTheCliff and @Octopus45 . And thanks to all on this thread- it’s really encouraging and inspiring to read your adventures.🌺🌺

Great to hear you are recovering well Top.

Excellent idea to look back at our progress in recent months. Looking back at my first post in this thread, I was hoping to keep my weight stable which I have done, although now I’m exercising more I need to worry less about the scales and more about my fitness and strength.

I was about to start acupuncture which I’m still doing and finding very helpful for my peripheral neuropathy. I was also starting with an exercise physiologist who I’m still seeing although a few illnesses and injuries have interrupted my progress along the way.

I was really stressed about my job stress and I quit! Now it’s replaced by money stress haha but I feel so much happier.

I was having investigations into my liver which I was anxious about but I’ve since been given the all clear there woot!

And mentioned I still had a hysterectomy ahead of me - I have my first appointment with the gynaecologist next week to get that organised.

Overall Im happy with where I am. I would like to be a bit more consistent with my exercise so that will be a focus although having a hysterectomy will no doubt keep me sidelined for a while.

Morning! (Or whatever the time of day it is elsewhere - though I'm not sure whether we have anyone elsewhere than Australia).

What's everyone up to this weekend? I'm going to a gym class early with a friend, then probably spending some time studying then taking tea round to my mum's and helping her sort out various admin issues. Tomorrow I'm going down to London to meet a friend. I'm still not spending money so will probably just mooch and eat, possibly go to the Lido at London Fields.

It's nearly 2 weeks from my scan now, and I haven't heard anything, I thought I might feel reassured by now that I wasn't likely to hear anything bad, but I think I'll probably feel unsettled until I get confirmation. I've had too many nasty surprises from the NHS to feel that everything works as it should, especially at the moment.

I'm going back into hospital on Wednesday to have some "corrective" surgery after my Whipples op in 2019. I'm having my Roux Loop made a bit longer (this is part of intestine-liver system). My original incision - about 12 inches long - will be reopened so there may be problems with scar tissue. The surgery is to (hopefully) make it less likely that I'll stop getting recurrent infections - cholangitis, but it's not life or death like my original surgery was.

I'm feeling very, very anxious. When I had my original surgery I didn't feel scared at all. Now I'm so nervous I keep thinking of cancelling. I remember how dreadful I felt after the original surgery - the pain, the horrible hallucinations from the pain killers, not being able to walk for days and days, drips and tubes including a naso-gastric tube which I'll be having again. I got lots of infections before and was in hospital for weeks. I've was warned at pre-op that may occur again.

There's no one in real life I can talk to. DH is hopeless at discussing anything like this and my DSis just told me to stop being ridiculous, which doesn't really help.

Oh @MissMarplesNiece that sounds a tough proposition. It’s hard to go through such an ordeal unless you truly believe the outcome is better than where you are now. Let’s manifest the best result for you with minimal pain and no complications. Your Sis sounds rather unsympathetic. Let her go through it before she dares say something like that.

I am now on day 8 post hip replacement and went for a short walk on crutches up the road as suggested by the physio. At the top of a very short hill I met my personal trainer! I don’t know who was most surprised. Extra brownie points to me. Then my friend popped in and kindly washed my hair for me over the basin. I feel so much better for it.
DH is dealing well with the sudden unexpected death of his DM yesterday. It was quite traumatic as he got there to find her on the floor and she died in his arms. The 999 call centre asked him to do CPR which he found quite distressing. We have been gathering with family for tears and cake and lovely memories today. I don’t know how long his DF will last now but it’s a really tough time for DH. I’m doing my best to help but I am a bit useless currently.

@SierraSapphire is there a CNS you could ring for a heads up? They can be helpful at speeding things up sometimes.

Oh @TopOfTheCliff I’m so sorry to hear about your MIL. And your poor dh- what an awful thing to go through. Thinking about you both.

@TopOfTheCliff sounds like the recovery is going well but I’m so sorry to hear about your MIL, that sounds so distressing for your DH.

@SierraSapphire I don’t think it is unreasonable to want something more concrete than ‘no news is good news’ after a scan.

@MissMarplesNiece hmm I think DSis needs to work on her empathy. If I had to go through a revision of my bowel surgery I would be far more anxious than the first time because I know what to expect. I’m nervous about my hysterectomy just because it’s surgery and frankly any time someone digs around in your insides I think it’s ok to feel a bit cautious about it.

Summer holidays are over here and ‘normal’ life has resumed. Which means cricket 6 days a week for DS and supporting DD who is in her final year of school. I’m still job hunting, haven’t heard anything about the one I applied for which is disappointing. I thought I had a good chance at getting an interview.

@TopOfTheCliff I'm so sorry to hear about your MIL. Take care of yourself, I'm sure you're being anything but useless.

@TopOfTheCliff sorry for your loss. You’ve got a lot going on and are doing brilliantly.

My parents are back with us, it’s lovely to see them but it means we are still not in a routine and today is going to be ridiculously hot.

I was looking back at puppy pictures of Bertie yesterday (we don’t have kids so he’s our furry baby really) and then I got on to pictures from the last year and a bit. I didn’t document everything like a crazed instagrammer but I do have a few pictures. It was interesting to review the journey. Just the toll all the chemo took on my physical appearance is shocking. But I’m looking a lot better now… The only way is forward.

The interview I think went well, but I think they interviewed a few, so all I can say is I did my best. They are the first charity organisation that I’ve felt I’d really be proud to work for. Fingers crossed!

My aims are relatively simple for this year. I’d like to lose some weight. I need to get physio sorted. I’d like to get a regular income. I’m seeking balance. I’m part of the way there.

I seem to be flip flopping emotionally a bit at the moment though. I keep feeling like I’m getting a sore throat so I need to up the vitamins!

Achievements - sorted the diet out the last two weeks. Are very healthily with no sugar. But now it’s birthday fortnight! So the odd treat will occur!

@MissMarplesNiece love your name! I’ve had a lot of abdominal surgeries (6 to be precise) not for cancer. It’s scary. I think that even though we know what to expect from the surgery to a certain extent the load gets heavier each time. It’s horrid when people who are close to you are dismissive.

It sounds as if it is a big surgery. (I narrowly missed having a bowel resection myself). I would try and plan for things to distract yourself afterwards - and maybe a goal/reward for when you recover, which you will.

However we all get it (as much as anyone else can). I guess what I’m trying to say is you are heard and understood. Best wishes and keep us posted. X

@remaker sometimes they take ages to get back to you. Don’t give up hope. But keep casting your net in the meantime!

Naughty food update - we went and saw some live music last night! Big band and an Elvis impersonator outside (lovely evening by the beach) and we had the best icecream my Dad’s ever had. Biscotti and dulce de leche! Yum!

Glad you got all clear Remaker.

Have a nice time in London Sierra. Nothing too much this weekend, Friday was just Chinese takeaway, Sat DH went to see a piano and tomorrow will be swimming.

Sorry about the extra surgery MissMarples very understandable to be anxious. I get anxious about things and just want to hide but I guess it's costs versus benefits.

Sorry about your MIL Top that's tough going for you all, hope your DH is OK and hope your hip recovery goes well.

Hope you get the job Fairywren and sorry you got cancer before you had children.

My sleep has been dire even by my standards so I have started no caffeine, as you can see it's 5am and not got to sleep yet so that's going well. 😂Not sure why I feel anxious at the moment, it's mocks and unis for DD but all going well, DS is very slightly improving, DH is fine though maybe I am trying to get mammogram and struggling as want different hospital. Might just go private and then at least will be done quickly. I think there's lots in press about people dying of cancer atm and might be that.

And they are chasing me for a smear too though now just HPV tests and not sure there is much point in that, often end up bleeding at them and never had hpv. Got the orchid festival at Kew booked and a tulip festival in UK. DD got another uni offer in.