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

I am Home after a long day of waiting around in pre -op getting hungry and grumpy. I went to theatre at 4pm and came home at 6.30pm no restrictions and no pain so far. One tidy scar!

@dotty2 well done making the decision. I’m sure it’s right to throw everything at our recovery. We may live 30 years!

I’m so glad I’ve got this thread. It makes me feel ‘normal’!

I did lots of work yesterday. Made the decision to get stuff done, I completed an assessment for the course I’m doing in record time and then taught the uni course online I’m running in the afternoon. I think I’ve taken too much on again - but if I plan my time wisely I should be ok. I just find now if I do lots of work on the computer that I get tired after a while.

We went to see Ghostbusters - Frozen Empire last night and for some Japanese food. Love a nostalgia fest movie!

I’m thinking when I get stronger I might get a person trainer. I have to strengthen my body further if I’m going to get through the next phase (however long that may be) unscathed.

@TopOfTheCliff thanks for the words of wisdom.

Be lucky all!

I’m home after two nights in hospital. Not too much pain but I’m still quite bloated so bending over is tricky and picking anything up off the floor requires a bit of a limbo manoeuvre.

We’ve had a cool snap and torrential rain here - almost 20cm in 24hrs which is insane - but within an hour it then turned to clear blue skies and forecast 28 degrees. My poor neuropathy-affected feet will enjoy the respite, I was contemplating if I could sleep with Ugg boots on last night they were so painfully cold. My cats have been helping out occasionally by sitting on my feet but being cats they’re also very keen to get on my lap, putting their claws dangerously near my stitches and then will flounce off in a huff when access is denied.

Now the monsoon has eased I’ll be able to start some gentle walking outside which will hopefully ease the bloating and discomfort. Shuffling up and down your own hallway doesn’t feel like much of a recovery benchmark.

Happy healing to you @TopOfTheCliff and good news @dotty2 on moving forward with the surgery.

@Remaker you need a grabber to pick stuff up off the floor. Amazon supply them cheaply. Take it steady and I hope you recover well.

My wound is totally pain free but when I run my fingers over it, it gurgles! I think there must be air inside. Weird. I shall sleep on it and see if it has gone in the morning.

@TopOfTheCliff oh yes what a great idea! I’ll google a grabber while I’m searching for diabetic socks to warm my feet up.

Well done @TopOfTheCliff for another step forward, it's been a bit of a gruelling process for you but hopefully you will stay pain-free. Glad you're home too @Remaker, shouldn't be too long before you're able to do more. I was trying to remember how long it was before I went out for a walk, maybe a week or just under. We went out to a cafe on day 3 but DD had to drive me whilst I clutched a cushion to my belly!

I've taken onto too much as well @FairyWren7 - but the prospect of being financially stable again has meant I haven't wanted to turn things down plus the prospect of having money for a holiday in June. I'm going have to work today and possibly tomorrow, but I am going to go to a yoga class at the gym in a little bit and then I'll work from there and have some nice brunch which will make it bearable, and then a swim and spa. I get tired too, then I panic that I'm tired because I've still got cancer rather than I've worked for 4 or 5 weekends in a row and started at 7am! But I tell myself I am lucky I am able to do this.

@remaker glad you're out of hospital. Second the grabbers!

@Sierrasaphire totally relate to the worry that every little change in the way you feel is the cancer coming back. I'm often quite envious of my compadres who have never had cancer and don't have that 'hmm, at what stage do I call my CNS or check with my oncologist?' for every little thing.

I think I struggle with the vagueness of the chance of reoccurance for my type of cancer. From what I can glean it is somewhere between 20-70% which is helpful. On good days I tell myself to ignore the statistics and just do all I can to keep myself healthy. On bad days it feels like the sword of damacles hanging over my head!

Had a lovely day yesterday though - gym and swim in the morning, a nice late tapas lunch with my partner and then went to see cirque du soliel last night. They were fab, the athleticism and skill literally took my breath away.

In some ways similar @ClashCityRocker - if my cancers were staged correctly then the risk of recurrence is pretty low, maybe somewhere around 20%, but I have that doubt because they didn't sample my lymph nodes or my omentum, which they would've done if they'd known that there was endometrial cancer in my ovaries and also a spot of ovarian cancer (I was originally told just endometrial and 1a1, recurrence risk 5%). if I knew the 20% definitely applied to me then I would feel much better probably. But all I can really do is carry on as if everything is going to be okay whilst also looking after myself better than I was doing before, primarily not meeting everyone else's needs all the time and becoming exhausted. <She says as she plans to work all weekend 😂>

Thanks @SierraSapphire it feels like I have finally got to the end of my medical ToDo list. A year ago I finished radiotherapy and thought cancer was behind me. Then “ just in case” I was offered 6 months of Capecitabine. That floored me, but I got through. Three months recovery then get the hip fixed. Two months recovery then get the scar revision. Now it’s all done and I can get my breath back and start again the process of losing the extra weight and getting fitter again. It feels like a weight is lifting off me ( but not from my waistline sadly). We just need to fix DHs skin cancer, bury his DF and then we can start looking forwards again.

Does anyone else have ongoing peripheral neuropathy after the end of chemotherapy? I had PN during chemo which quickly faded within 3 weeks of chemo stopping and I thought that was the end of it. However I have started experiencing it again - stopped chemo 12 weeks ago and was PN-free for a couple of months but I am getting it again and I don't know whether this is some kind of delayed chemo effect or a new unrelated health issue.

@HohiyiKozbevi yes I still have PN 8 months after chemo. I got quite freaked out that mine started getting progressively worse a couple of months after chemo finished but our lovely fellow recoverers here assured me that was common.

I think you also had bowel cancer? I had 12 weeks of Oxaliplatin and Capecitabine. During treatment my PN was quite painful at times. Post treatment it presents as numbness. My feet were always more affected but I had numbness in my fingertips on my left hand and more extensively on my right hand.

I’ve been having acupuncture which I feel has helped. My hands are completely normal again and the soles of my feet which were totally numb are about 80% better. There is a noticeable improvement after every acupuncture treatment. Unfortunately due to injuries and illness my acupuncture sessions have been disrupted this year but once I’ve recovered from my hysterectomy I will go every week and hopefully that will help ease the last of it. My feet are still freezing cold all the time so I wear socks and slippers in the house and trainers outside. Being Australian I was very much a bare footed person before! I have to wear socks to bed every night regardless of the temperature.

@Remaker thank you. Yes freaked out is it i thought this was all over and I just needed to work on recovering to full health and fitness and I think I would really prefer this to be a symptom of a new unrelated health issue than be living with this as an ongoing effect of chemo with apparently (I know I shouldn't look at Dr Google) no reliable cure and no way to know whether it will be permanent.

I also have autism and one of the aspects of chemo I found hardest to deal with was the sensory overload of my skin, mouth and senses all feeling "wrong" and it's been lovely the past few weeks since chemo stopped that these things went back to normal and it's so upsetting for my senses to have now gone wrong again apparently spontaneously.

I had mild peripheral neuropathy with IV chemo that wore off afterwards. The oral Capecitabine has left me with numb toes from the 2nd to 4th on each foot. I put on some new boots and it felt like there was paper stuffed inside although there wasn’t! It is six months on and hasn’t settled yet.

The MN cancer is a lifestyle choice seem to be out in force on a bowel cancer thread. 😡I have reported it but it continues with excellent advice such as exercise causes cancer and if you were slim and healthy and got cancer you really weren't you still had a bad diet. I think people got it moved as offensive but has been moved to our section. I'd either report or hide or ignore. Apparently a woman at 28 who got breast cancer it was Monster energy drinks. She was a personal trainer so not doubt it was the exercise as well according to them. 🤔

Went swimming last night and still losing cancer treatment weight at around a pound a week.

@Penguinsa people do talk a load of nonsense without stopping to think of the harm and hurt they can cause. We know there are risk factors for cancer, but of course not everyone is going to fit any of those criteria! When I got breast cancer it was just shit luck, Dh has a brain tumour, again didn’t fit any of the risk factors for cancer. Still there’s nothing like an armchair expert eh?!

Anyone got any advice for dealing with ongoing fatigue? Sometimes I’m fine and then I just crash with no notice. I can definitely do more than a month ago but I still need a sleep most afternoons. I don’t feel I’m very good at managing it.

@tam23 I'll be reading any replies with interest. I have days when I can hardly stand because I'm so tired, then other days (like today) I feel quite good. I wish it would even itself out.

Thanks Missy

I don't get tired much, have the opposite where just cannot sleep, but I am not working and maybe if I was I would get tired. I think swimming helps with energy levels, the more you exercise once you get through the initial build up stage the more energy you have. I do find dieting can make me sleepy - I am better with slightly more calories including some carbohydrates and exercise than a no sugar regime. Sleep I am very erratic when I sleep since chemo but I do find if I nap in the day it can be a vicious cycle and I am better to stay awake in day and go to bed earlier and add to the night. I think I sleep quite a bit less overall than pre cancer treatment and wish I would sleep more. Probably have too much tea.

Had to move bone scan as clashed with DHs health checks (feel like an elderly couple!) and its been moved to next week. Bones feel fine so should be OK. Still awaiting MRI letter but chased again. They are just so busy. I regret cancelling the one from before a bit though.

@Penguinsa Did your GP arrange your bone scan or have you booked it privately?

I'm asking because as part of my cancer treatment I had a large section of my small intestine removed, including the part where many vitamins & minerals are absorbed. In addition my pancreas doesn't produce enough enzymes for me to digest food so I take supplementary enzymes (Creon) to assist with this. I also take a multivitamin/mineral tablet daily.

I was worried about Vit D and Calcium deficiency affecting my bone strength and asked my GP if I could have a scan. He completed an online questionnaire with me that concluded that I wasn't at risk and didn't need a scan. Sitting at home later it occurred to me that the diagnostic tool he used was probably very generic, not aimed at people with the digestive/absorption problems I have. This was about 2 years ago but I've never gone back to follow it up. I wondered whether it would be just easier to book a scan at one of the many private providers we have in Birmingham.

I’ll be honest - when I got cancer it was a real shock because it didn’t fit with any of my ingrained health beliefs. Basically I thought it would NEVER happen to me. But I include the shattering of that bizarre belief as one of the positives of my experience with cancer. I think my level of alcohol consumption over a long period is the thing that may have tipped me into cancer - I didn’t have any other risk factors. I would never, ever pin anyone else’s cancer on their lifestyle but I do sometimes wonder why people who have had cancer don’t address the obvious risk factors for recurrence. If I get breast cancer again, I can face my children and say I did everything I could to prevent it.

As far as fatigue goes, I’ve just had to adjust my expectations of what I can do in a day. But it was the fatigue that led to me retiring early.

MissMarples It was my oncologist at the hospital who ordered it but she pre ordered it 2 years in advance. With the breast cancer we are supposed to have access to monitoring for 5 years via the breast care team, its rare that they actually help but can try. Think mine is as I'm on Tamoxifen, not sure if its because of Tamoxifen or to see if they can change to an AI which can damage bones.

Sorry I had no risk factors when got mine, never really drank, normal BMI, exercised, no family history etc. I had had loads of bleeding so was half expecting a cancer related to that and completely shocked to find breast cancer especially as a 5cm lump just appeared overnight. Never knew that was possible or that breast cancer was the leading cancer for women of my age. I do try and reduce reoccurrence risk with masses of exercise. I can understand people turning down things when there's a big impact on quality of life, I am not sure if I went to stage 4 I would want every treatment going if I was very ill on it though hard to say until you are at that point.

@sorrynotathome Think I may be retiring too at this rate, though I’m too young to get any pension yet and not sure if I’ll qualify for ill health retirement. No life style risk factors here. Don’t drink or smoke, eat well, exercise regularly, healthy weight, had children young, breast fed for years, no use of contraceptives or HRT. Always knew it was coming though, as strong family history. Just wasn’t expecting it so young. I’ll carry on with my healthy lifestyle, even though I don’t feel it’s made a difference, as it’s how I enjoy to live.

I’m too young for pension @tam23 but have downsized and currently living off the savings. I’m back to being frugal like I was in my 20s!! But much happier for giving up the rat race and I now have a couple of grandbabies to look after. They are much easier to please than corporate bosses! Sometimes I think that having cancer relatively young is “better” - you’re more able to cope with the treatment. I can’t imagine how I’d cope with chemo in my 70s. Listen to me - being all positive like @TopOfTheCliff 😂

@sorrynotathome I was in the same situation as you. Healthy lifestyle and illness happens to other people not to me. I was probably drinking a bit too much wine and gin but no other risk factors. I was so cross when I got Breast Cancer! So I cleaned up my act, went teetotal and mostly vegetarian, exercised 6 hours a week and bam! I got another primary breast cancer, different type. So I have concluded it is just bad luck, the random workings of fate, or some bad tempered deity I offended when travelling in the Himalayas. The righteous souls on the cancer threads blaming bad lifestyle for cancer are just trying to reassure themselves that they will be okay and cancer would never dare to attack them. Sadly we know better!

I really think exercise is the best treatment for fatigue. My energy levels rise the more I do. But it’s hard to get going when you are feeling wiped out.

I am also kind of retired but seems too young to say that at 51 and my civil service pension isn't claimable until 60, personal and other work ones can get at 55. Luckily have savings and no mortgage and also get ESA and being married helps. I quite like not working but it does feel a bit odd and also it may well be life expectancy is brought forward quite a bit. It's strange though as feel too young in some ways and kind of wonder what your purpose is but then I think meh.

It may be worth getting bloods if very tired to see for deficiencies or I just take a well woman 50 tablet which has iron in it if ever I feel really weak. Don't need to do it very often now. Or iron rich foods like steak and spinach.