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.

@dotty2 too true- I share quite a lot about my treatment/ health with people but that's one area I'm less chatty about!! I think in the end it's all about getting the balance with medication/ food and knowing what works. Will probably get there just as the 2 years are up as time is speeding by!

Thanks very much Rose and Dotty We must have been interviewed same year Dotty but Cambridge gave me a deferred place as DoS was taking a sabbatical and wanted me to do same years as him. I still remember the interview but I actually loved my interview even though I was about as shy as kids got and no-one from my comp had been there before so no mock interviews. Its odd so much is on the internet these days, well not odd but such a different world.

I had an interview at Cambridge, but as I didn't give a shit about my subject (natural sciences) and I was only doing science A levels because dad made me (I wanted to go to music college) unsurprisingly I didn't get an offer. I do go shopping there sometimes though! And one of my best friends from sixth form was there, so I did get to spend quite a bit of time there in the end!

Oh, and I meant to say well done to your DD Silkie.

Thanks Sierra I also initially had A levels picked by my mother as they were "ladylike" and would help me find a good husband. 😂And was forced into French, English, German which I hated. Thankfully school let me change and ended up by 3 I did like though one out of 3 I ended up having to self teach as it had caused delays. Yes I remember they really wanted a passion for the subject. DM was most disappointed on me getting a job after it and not just marrying someone very rich and having endless children. I remember DF saying its really pointless to educate women as they will just get married and have kids. Still happily reading the Daily Mail.

Just off swimming now.

Ha Silkie my DPs were the other way around, my DF was a mistaken feminist who thought sciences was a good thing for a girl to do (and I could go and live somewhere else if I wanted to do something else) and I didn't do very well in my original A levels, went to uni to do engineering, dropped out then taught myself A level biology in 6 months, the only A I got, whereas my DM thought that I might get a rich husband by going to uni. Though because their relationship was so dysfunctional they discouraged me from having any relationships at all, both by explicitly saying it, but also by putting me off from my experience living with them! It has made me very aware of things not to do when parenting, and I think it may be a better parent because of it. I wonder whether parents are still like that with kids these days?

Hi all, hope you are doing well. My
herceptin was paused about 6 weeks ago which means I have missed two doses. It was paused due to chest pain and headaches which have since subsided. I have just come out of echo cardiogram and wasn't told anything even though it took longer than usual. I tried to get the staff to say what is wrong but she just smiled and said an email will be sent to my oncologist before Monday. I do have an telephone appointment for Monday with my oncologist but since its a Friday I will have this anxiety all weekend!

Has anyone experienced this and how did you cope? I am regretting not pushing harder for them to say something today though.

I was also sent for CT scan this week but not heard anything. I will be fine...I will be fine..I will be fine.

Just need to keep saying that to myself. Lol

Sorry Make that sounds stressful. I think the best thing if you can do is try not to think about it and ask oncologist on Monday. I find at the scans they won't say anything and have had ones take longer and nothing much found. I think they aren't allowed to say. Hopefully will get all clear or something minimal on Monday.

Just been swimming and celebratory pizza for DD.

It will all be fine! Was my mantra when doing endurance racing. I painted it on the side of my boat and had a T shirt with it too. It kept me calm in storms and rocky bits. It is very useful when you mind is spinning with potential disasters.
Hope the wait isn’t too long @Makemineadecafplease and you can keep busy.

I’ve been to cancer recovery yoga today. Bliss! I didn’t want to end the meditation it was so chilled and lovely. Off to 5k your Way tomorrow at the Parkrun with my DD. She runs, I hold the dogs lead!
This has been a good week of gentle recovery but as usual I want to go faster and do more!

I made a big step forward in my recovery this week by quitting my job! When DH commented that I’d cried more over work than I had during chemo I realised it was time. I feel like a weight has been lifted and I know it was the right choice. I’ll take a break over Christmas to focus on my recovery and then look for work next year.

I’m continuing with acupuncture and it’s definitely helping my peripheral neuropathy. My left hand is basically completely healed, my right has just a touch of numbness at the very tips of my fingers. My feet are taking longer but there is definite progress. I can feel my individual toes again instead of just numbness.

Thanks @silkie just talking about it here has helped a lot. It is very stressful.

Thank you @topof you have actually given me an idea for my Christmas tshirt. Good luck at your park run, I have had the dates of ours in my calendar for more than 6 months but struggling to find time or strenght to go, I even added dates for junior park run so the dcs can go and I watch. But this has not happened either. Hopefully next year.

Welldone @remaker we all have to give something up to feel better within ourselves and i am glad you know what it is. I have been reading your post and I know you have been through the hell of a time so it is wonderful that you will use this time to recuperate. Hugs to you.

I just woke up now which means I had a good night sleep since 11pm. Off to do some weekend and Christmas shopping in about an 2 hours. Traffic has become horrendous in my town so I tend to avoid going out at midday on Saturdays. Have a good weekend everyone.

Sympathies @Makemineadecafplease - I don't think there is much you can do about the hell of scans other than try to distract yourself, though God news that the symptoms have subsided.

Well done @Remaker - I have quit jobs three times with nothing to go to and now have my own business that has always been successful (at least up to the Covid and cancer shitshows, just regrouping at the moment).

I have arranged for some support over the last week, and have got Macmillan counselling sessions agreed in principle, some mental health workplace support from Able Futures to help me with the focus / motivation issue, and some practical business support from the local authority. I also asked for some help on a freelancers Facebook group around issues around motivation. I still think I need to do further work on the realities of my new post-chemo, post-menopause brain and the patterns. It now seems to allow me to work in, which are quite different.

DD is home this weekend (again!) - last night, we went to a wreath-making evening at the café she used to work at, just for staff and friends, and today I'm taking her out shopping for the day to Milton Keynes for a change of scenery, not that we can actually afford to spend much money, but it's nice to spend time with her.

@TopOfTheCliff suggested I come over here, so here I am.

Diagnosed with breast cancer in June 2021 aged 52. HER+, lumpectomy and no lymph node involvement. Went on to have 3 EC, 9 paclitaxel plus 18 Herceptin injections. 5 fractions of radiotherapy and began taking Anastrozole in April 2022.

I went back to my teaching job in April 2022 on a phased return and was full time by the end of May. Was desperate to get back to work and the normality before cancer - little did I know that that person no longer existed and normal had gone forever.

During April, May 2022 my asthma really took a turn for the worst and I was constantly breathless. Ended up in hospital for 3 days in November '22 with a severe asthma attack. Various tests, CT scans and other investigations led them to discover I have something called eosinophilic asthma. Could have been caused by covid, radiotherapy or it may have just happened anyway- but I'm stuck with it and it won't ever go away.

Our biggest and most loved past time, walking could no longer happen. Even walking up the stairs is a struggle.

I was eventually started on a drug in April which were monthly injections to suppress the eosinophils in my blood which are causing the breathlessness. Sadly this drug didn't work as well as they hoped.

I'm now waiting to see what happens next as there are other injections I can have.

Meanwhile, I'm still teaching fulltime and struggling everyday. My voice has changed and I can no longer project it as I used to. Even reading a story leaves me coughing and spluttering. I've had about 10 courses of steroids in the last year so my weight isn't great.I'm irritable, emotional and feeling the affects of 20 months of the Anastrozole.I feel like a dried out prune,

Im permanently exhausted, I sleep in 2 hour chunks with a 3- 4 hour gap of insomnia in the middle. I have little patience with the lovely 6 year olds I teach, which is awful to admit to.

I've now dropped to 4 days at work and we are making plans to downsize and get rid of the mortgage next year. Hopefully this gives me more options.

I really need to see if I can get ill health retirement but I'm not sure if I've exhausted all the asthma treatments yet.

I'm 54 and honestly feel 84 some days.

@Remaker well done for prioritising your health! Time to rest, and do whatever makes you feel good and happy!

@BG2015 Welcome, it sounds as if you are having a rough time of it. Teaching is so full on. I’m just doing supply after breast cancer with a lot of complications. When I moved to Melbourne a few years ago I had a bout of thunderstorm asthma which was very nasty so I can empathise a little with what you are dealing with. It sounds like you have a plan in place to ease the situation. You used to be able to retire with ill health one of my relatives did that with stress but this was a good few years ago.

I’m still teaching but have yet to find whatever the next job is. I’m doing a diploma in community development and hoping to find something in that area.

But from now until my parents go back to the UK at the beginning of Feb I’m going to prioritise getting fitter. Went swimming again today and did 20 lengths. (Also did a big dog walk this morning) Will start doing the gym in the next couple of days too.

:)

@FairyWren7 I envy you your exercise. We used to walk 10 miles or so most weekends. Stop at a pub for some lunch.
I'd also do Zumba, spin classes and run on the treadmill at the gym but I can't do any of that now.

I'm hoping a new injection may work and then I can increase my fitness again.

@BG2015 glad you found us. We understand your frustration and grief. It takes a lot of time to rebuild a new life and it is hard to be patient.
I am struggling with stiff arthritic joints holding me back, but I am having a new hip in 5 weeks or so. Meanwhile I am trying to lose weight and get fitter slowly through healthy eating and yoga. Today I did one lap of 5k your way Move against Cancer at the park run with a stupid Movember moustache on. At least there were cupcakes!

@BG2015

welcome to the thread!

Sorry to hear your asthma has got so bad. I also have asthma and really understand what it's like when breathing is difficult. I'm ok with it now since getting a really good respiratory consultant, plus mine is allergy driven and a different type to yours. Have you got a good respiratory team? I was prescribed the wrong (dangerous for me) inhaler for 20 years.. so I know that having a good asthma team is crucial.

I've got a question for you, you said you are Her2 positive, and I am too. But why did they put you on Anastrozole?

I know from the Marsden that oestrogen blockers are given to triple negative patients because there's some evidence it can help prevent brain mets, but they said Her2 patients aren't because that doesn't apply to us. I'm not on anything now, so am interested why you are on Anastrozole as a fellow Her2 patient.

@Makemineadecafplease

Sorry to hear you're worried about the heart echo and had to have a break from Herceptin. I had 18 cycles of Herceptin (along with Perjeta) and loads of heart echoes. My LEVF dropped significantly on EC chemo, but didn't on Herceptin, so they kept me on it. My GLS at the end of treatment was under the normal range, and I am somewhat concerned but the NHS aren't going to even monitor my heart now treatment for the cancer has finished (after well over a year of toxic stuff infused / injected into me). In the US, they monitor everyone who's been on anthracyclines + Herceptin (I had it as Phesgo), which I'd prefer, especially seeing as my GLS is too low.

Good luck and please let us know what they say.

@SummerCycling the Anastrozole and other oestrogen blockers are given for an ER positive tumour. That is a separate thing from HER2 receptors which are treated with Herceptin Phesgo and Kadcycla. The triple refers to oestrogen receptor status, progesterone receptor status and HER2 status. I had one triple positive tumour then a triple negative one. I’m still thinking of two more years of oestrogen blockers for cancer no 1.
I understand your anxiety about your heart. I was very breathless with EC but didn’t show any changes on the echo with Herceptin. I gradually recovered after treatment stopped for no 1, (partly due to cycling up lots of hills!)and when I was scanned again for no 2 it was back to normal. I think they won’t scan people without symptoms such as breathlessness or swollen ankles. If you have symptoms then you should report them. You are making great progress with your fitness!

Can I pop into ask a question please. I got through breast cancer treatment over a year ago. Just a lumpectomy, some axial nodes (all clear) and RT. Didn't post about it because of privacy concerns at the time. (if anyone recognises me irl pretend you don't).

I had got back to a completely normal life (lucky me) but a couple of weeks ago noticed that my trunk was starting to feel really tender. I couldn't see any bruising so thought that maybe I'd pulled a muscle somehow.

It's been getting more sore, my movement is a bit restricted when getting stuff out of the cupboards as it's tight and today I noticed what looks like cording going from my boob to my hip. I did have some in my arm after surgery but it resolved well.

Is it usual to get cording so long after treatment, in a place you've not had it before? Is it something I can just massage away (though it's really sore to touch) and not bother anyone, or do I need to talk to the BCN? I'm not sure I've even got a contact number for them anymore as I ended up without a named one due to staff shortages. Will the clinic even want me to talk to them so long afterwards?

Must admit I'm a bit upset about it. I had gone into happy denial about the whole sorry saga.

Having read what @BG2015 is going through, I feel silly now. BG.

@OhYouBadBadKitten - don't feel bad, we are all on our own journeys, and anyone can ask for support. I am less far on from the end of treatment than you, but I had bad cording initially and had a new 'cord' pop up in my arm pit a few months after the end of radio, that definitely wasn't there before. I am also waiting for a referral for suspected lymphoedema and also get the tenderness in my trunk. I sometimes feel bruised over my ribs. But that could be RT after effects too. So I think what I'm saying is that you should try to get through to the BCN team, and if you need a new GP referral they'll tell you. (BCN support does seem to be very patchy - mine are very hard to get hold of and are limiting the services they offer because of shortages.)

@BG2015 - I'm sorry, that does sound really tough. It must be very hard not being able to exercise when it's something you used to love, and it's such a de-stressor too. I've no idea whether this is something that could help, but could you ask for a referral to a speech therapist? My DH had voice problems caused by a combination of reflux, asthma and another condition (which hadn't been diagnosed at that point), and had a few sessions of speech therapy and was given a set of exercises which he did pretty conscientiously for a while, and they did bring some strength back to his voice.

@dotty2 that's a really good idea actually. It's one of the things that really affects my confidence. I've never actually seen my respiratory consultant - all the appointments and clinics I've been to are run by asthma nurses. But, I can definitely ask the question.

@SummerCycling sorry, I'm also ER and PR positive too (blame the brain fog).

Prior to my breast cancer diagnosis I had a hysterectomy (fibroids) in 2017 and started on HRT a few months later. I loved HRT. I slept well. I felt great - it was amazing for me and when I had to stop it I was gutted.

I have an amazing partner. He was my total rock through all of my cancer treatment but I have zero libido now. When he touches me I feel absolutely nothing and that just makes me so sad.

I've actually got an appointment to discuss my medication next week. I stopped taking the Anastrozole 8 days ago. I'm presume they will, suggest Letrozole or tamoxifen but they're probably all much the same.

@OhYouBadBadKitten welcome, the first test is to tell us about your kitten! We like pets here.

Cording and swelling can happen at any time after treatment, even years later. You need either a nurse with lymphoedema expertise or a physio used to treating cording ( or both). Your breast unit may have one or you may need to hunt one down privately. Where in the country are you? If Devon then I can help as Imhave found a wonderful physio. It doesn’t mean anything bad is happening just post surgical and radiation damage but very annoying. The answer will probably be massage and exercises.