Cancer Support Thread #81 Newbies welcome

[TopOfTheCliff]

This is a kind and friendly place for those with cancer or those worried they have cancer (or who used to have cancer) to hang out.
Please introduce yourselves and chat away. No issues are too big or small here.
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Thanks for sharing your stories, Running and Sewing. It’s really hit me that there IS another narrative than the horrorshow that’s been filling my head at the moment.

@HauntedDishcloth Hi there haunted - I replied to you in my head then forgot! I also have a 'worth it' scheme, and, ever the optimist, I find myself often thinking: just one good year. (I have a subtype that tends to recur sooner rather than later.) It's just a thought, a plan - I wouldn't say I'm especially anxious - just always conscious of it.

@TopOfTheCliff I do like to think of you on your adventures - that sounds splendid! Yes, I was at the end of my rope with the side effects but it is somewhat bitter sweet to be taken off treatment 8 months early. She's never seen anyone react so badly to Kadcyla - can't help but wonder how they'd treat me if it comes back. Here's hoping your joints and my lungs improve in 2022. Good vibes for your mammo tomorrow.

So many people waiting on tests which is always stressful. And a few of us at the other end now - in the indefinite watch and wait. @SewingBees I have to take sleeping pills with steroids - I hate doing it but it's worth it.

I had blood results today and my CA125 is still only 13 ! Been worried as felt that something might be stirring! I reduced my PARP because of the side effects(voracious hunger all the time) and those symptoms have disappeared. We all have the double worry about our disease and Covid
which will come up with new variants all the time I fee, like flue, but I wish everyone a restful Christmas, physically and mentally

sorry, feel and flu! (when will we get an edit button!)

@SewingBees There was no bell at my oncology unit, but not sure I would have rung it anyway. Congrats on getting to the end of chemo though.

@Podgedodge Sorry to hear that, it seems like such a long road but you do get into a rhythm and the time does go pretty quickly.

Saw my surgeon this afternoon, wound healing nicely and a clear margin this time. He said he took a wide excision and they only found another mm of cancer in it so am sent back to oncology and radiotherapy in January.
Annual mammogram in April and see the surgeon again next December for a follow up.

@MrsPnut Does this mean you are finally off the cancer treadmill? :) Congrats!

I also saw my breast surgeon today and they are ecstatic with the continued recovery and how well I came through. Everything was timed between the three doctors to ensure I could go back on treatment with minimal delay, which I did on Monday. I guess the fever I spiked on Monday/Tuesday (and subsequent visit to the clinical assessment unit to make sure it wasn't something bad) was just my body hitting the wall in a delayed fashion.

No radiotherapy at least as the pathology was better than expected and it would be better saved for the future.

@MrsPnut That's great news that your wound is healing and they got a clear margin. You deserve some good outcomes after all you've been through. I think you and I will be having radiotherapy at around the same time.

@MrsWooster There are plenty here who have made it through treatment and out the other side, albeit changed in some ways. @Topofthecliff is my inspiration - I intend to get fitter and healthier post treatment, though I doubt I'll match her cycling distances ever! She and others remind me of the need to keep posting and provide a light at the end of the tunnel for others at the start or in the middle of their own treatment journey.

@HerbalRefreshment Not quite, just radiotherapy but the light at the end of the tunnel is no longer a train coming the opposite way!

Thank you, Sewing, that is something I will hang on to.

Oncologist has painted a bit of a bleak picture, although I suppose it will be realistic. I hoped I could work thru chem but at least the first 8 weeks of treatment look to rule that out. There is only me now and I’m really scared of losing my job. (I’m a primary school teacher and he made it pretty clear that would not be possible to continue for that 8weeks). Maybe the second part would be better, but I have had 5 weeks already, because of pre op isolation, will have to take the 2 weeks Xmas hol as sick and then will start chemo week back.
Bleh. He made me feel about 16, even corrected my grammar (I mixed up affect and effect).
Feel crap now about whole thing, it’s all just too much on my own, it feels so unfair.
I know fairness does not come into it, but I just want to shout at someone. ( you lucky people❤️)

Podge

I'm a primary school teacher. I've been off work since the start of the school year. I had a lumpectomy in August.

My chemo didn't start until 1st October which was very frustrating but I was advised not to go back to work because of covid.

This did give me chance to start saving as my salary will reduce to half in February. My chemo should finish 2nd Feb then I've got radiotherapy so plan to go back to work after Easter (25th April). I'm hoping I can go back on a phased return, my confidence has been really knocked and I know I'll struggle to teach a class initially.

There is no way I could've taught a class through chemo! Occupational health advised this. I'm the main breadwinner too so it's a worrying time.

You may qualify for some benefits and Macmillan can help with that. I earn to much to get anything unfortunately,

Hope your treatment goes well

Also you can't lose your job as all cancer patients are protected through the disability act.

Is there a ‘normal’ for chemo..? If it’s a three week cycle, can I expect to be ok for some /any /most of the cycle? I guess the operation (complete hysterectomy, omentum, lymph etc) will take some getting over too?

Thanks BG, teaching a class is hard work isn’t it, even in the best of health. I probably should explain, am on temp contract BG. I know I can’t lose my job, but my contract can just not be renewed. Thank you for the info about not working, part of me thought I should try, but I know I can’t. My children are not babies, they are at the end of their schooling but I’d like to know they would have a home to come back to later. I was always the sole breadwinner even when DH was alive.
I’m probably in a much better position than a lot of others and I don’t know what I expected from today… to be told it would all be done and dusted by Feb maybe🤷‍♀️🤷‍♀️Not sensible,.

@MrsWooster It really does depend on what drugs you are having, I had weekly cisplatin as my first chemo and had no side effects except from an allergic reaction to the last two doses. They were pretty short lived though.
Next was 4 rounds of FEC which I had no side effects from but many people are affected by nausea and tiredness. Final chemo was 4 rounds of Docetaxol that floored me with leg pains from day 4 to 6, but that improved once my oncologist reduced the dose.
I did get away very lightly with chemo though and I consider myself lucky.

@Mrs Wooster I echo what @MrsPnut says - reactions to chemo depends on the drugs and your individual reaction. Mine have been 6 doses over 3 week cycles. Generally I felt crap for a week, better the second week, almost back to normal the third. But I also found I got more and more tired with each cycle and stopped work after cycle 5 and it has been a relief not to have to think about it or deal with team members wingeing about things that seem very trivial when you're fighting cancer. I also needed a dose reduction on docetaxel as my first one (my fourth cycle) absolutely floored me and I got nearly all the listed side effects one after another.

But I don't think you know for sure if you'll need chemo yet or have I misunderstood?

Hello. It's been ages since I've been here, but I wanted to come and wish everyone the very best possible Christmas. I've just scanned through and can see some familiar names are still here - I am sending you all the happiest of thoughts.

This time last year I couldn't look further ahead than a week. But now I'm over a year post diagnosis, have had an all-clear mammogram, and feel like I am finally getting my life back. I even have curly post-chemo hair!

Just wanted to let you know that there is light at the end of the tunnel. And also to thank you for the support and kindness I received here. This thread kept me together many, many times. xxxx

Podge So sorry you are going through this on your own and have been given a daunting treatment plan. Re working I definitely think you should take time off, your health is the most important thing. Re finances its worth checking out with say MacMillan if you would be eligible for anything, I am not as have savings and husband, well a tiny amount but can't be bothered with stress/time of claiming that relative to amount. Also you even on a temporary contract if you have a disability you are protected including under 2 years - I am no legal expert but I got very ill a couple of years back and on a temporary contract under 2 years and classed as disabled. The firm was able to make me redundant as they could say job didn't exist (which would be very difficult in your case) but they had to pay redundancy pay and they also had to pay my lawyer who got another £1000 out of them. I got about £5k in the end and was part time, exact amount will depend on a few things but definitely worth seeking legal advice or union advice over if an issue. The MN legal board has basic advice though obviously anyone could say they were a lawyer on there.

Glad you had some better news MrsPNut and Herbal

Thanks Pnut and Sewing. I am in for 3 cycles of chemo (then op, then 3 more, according to the plan) starting in the new year, so very useful to know.
Does anyone know anything about the hipec form of chemo..? Localised, internal, intensive ‘washout’, apparently-very good for the peritoneal cancers. I’m turning out to be ‘that patient’, who frantically Googles everything, so no doubt my doctors will be delighted about that when we meet on the 24th..!

@MrsWooster
Ovacome has a helpline and might be worth looking at Inspire - American site with bigger demographic.

First rule is don't Google!

I've had 3 rounds of EC - nicknamed the Red Devil on a 21 day cycle! I was pretty much floored for the first 6-7 days, luckily not sick or bed bound but very nauseous and tired. Weeks 2 & 3 I met with friends, went for walks etc and was just tired.

I'm now on weekly Paclitaxel and have done 2 of them (7 left to go) and I have an Herceptin injection every 3rd week because I'm HER2+. The Paclitaxel has so far, been ok. Apart from tiredness (& further hairloss) I feel pretty normal. Definitely more manageable than the EC but it's a pain having to go up to the hospital for weekly bloods, chemo & fortnightly covid tests.

My trust give cancer patients free parking so that's worth investigating as that can soon mount up. We also get a prescription for a wig.

Hi @AlbertCampion lovely to see you here! I like my curly post chemo hair it’s an improvement on my old hair and very thick despite the Herceptin and Anastrozole. I’m glad you had a clear mammogram. I have mine this afternoon and am trying not to forget it. I think it’s a coping mechanism that I am blocking it out of my head.
I have cut back severely on the Christmas plans because of Covid but it did occur to me yesterday I might be due a fourth dose vaccine booster as my third dose was 2 months ago. I am investigating.
I have signed up to a couple more long bike rides. It’s highly amusing that my club mates are treating me with awe since my long ride. I have been elevated to super athlete status. The truth is nothing could ever be as hard as getting through radical curative chemotherapy so pedalling up a hill in sleet is a breeze
@Podgedodge you sound like you have been tempered by hard times and have huge inner strength which will get you through this. Put yourself first! Don’t try to work through chemotherapy if you can arrange loans to pay the bills. This is one of the rainy days we save up for and time to call in favours. Sending strength and hugs.
@BG2015 well done you are cracking on through the chemo, it will soon be done!
@MrsPnut you will find radiotherapy a breeze after chemotherapy. Do you have a date for the planning CT scan yet? Hopefully it will be after Xmas so you get a break.
Regards to all

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Hi @MrsWooster I have been meaning to reply to your question before now so sorry for the delay I had chemo for ovarian cancer during 2020.
I had 3 weekly paclitaxel and Carboplatin I found that there was a routine between treatments. Week one was the worse for side effects. Week 2 was better and by week 3 I was feeling so much better I often wondered if I was actually unwell!
Obviously we are all different and respond in different ways my worse side effects were aching limbs and constipation(do take the laxatives they give you).
As a pp said Ovacome have a brilliant site and helpline.

I also had a complete hysterectomy mine was complicated by previous abdominal surgery. But even with that I was out of hospital in 4 days and recovery took about 6 weeks and I was able to go out for walks etc you just have to be very careful with lifting and follow the hospitals guidelines.