September 2015 Chemotherapy thread - Moving forward

Hi all, 

I know a few of you wanted to move the Anyone due to start Chemotherapy in September 2015 thread to this recovering from treatment board. 

The new thread is to long to move unfortunately, but I thought I would start this new thread so you can carry on the conversation in this new area. 

I have called the thread ‘September 2015 Chemotherapy thread - Moving forward’  for now but if you would like it to be changed just let me know :).

Best wishes, 

Lizzy 

Suzy hope you find this relocated thread.  I have managed to get hair shampoo in my eyes for the last 3 days, which is odd, then woke up this morning with my eyes all gummed up, like I used to in chemo.  Took a closer look & my eyelashes have gone again … for the 3rd time!  Not such a big deal, because they grow back fast, but incredible that the tax has such long reaching effects.  The onc told me Herceptin stays in your body for months after you stop taking it too.  When will this ever go away?!? Enjoy your day off xx

Peggy also meant to reply to your post but out of sight out of mind.  Your life sounds very stressful at the moment & it would be lovely to see you if it works your end, but no pressure if not.  Ringworm eh? How glam. Hope it’s gone now.  Much love xx

Found it!! I’ve been enjoying my day off. Tiredness is still an issue but so long as I’m sensible I can cope. I have still got eyelashes but they are sparse. Had to get new glasses though. Had an eyetest in June but decided to wait for eyes to settle post chemo. Not a massive change but enough to warrant the expense.
Ruth I hope you are not overdoing things. I remember you said about your mum at the beginning of your treatment. It’s so hard. My favourite aunt has dementia and it makes me cry to see how that disease has taken so much of her already. Life sounds hectic for you.
I’m looking forward to seeing whoever comes. Can I confirm that it’s the 19th? Don’t want to get the date wrong.
Love Suz xx

Suzy sorry to hear you have had the expense of new glasses. I am aware I need to have mine tested too, but someone said to wait 9 months after tax. I believe we did move to 19th in the hope that Chelle/PeggyC/TC could make it. Not sure whether Chelle has been in touch since we did that though. Enjoy your weekend xx

Well finally stumbled over the finish line 17 months after the nightmare began. Not seeing doc for 12 months. I asked what happens to HER cells once Herceptin finishes & she said the theory is that all of the random cells should have been flagged for distraction by the immune system after a year. Let’s hope the theory proves correct. Hope all well with you Suzy. Just back from hols today this end. Take care xx

Hope you’re having a good week Suzy.  Sounds fun.

I feel very free & mentally upbeat, despite another bout of Herceptin SEs.

I went to Brighton yesterday for lunch with my sister & my main support gang, who have cheered me along the  whole 17 months.  We had a lovely lunch in the Salt Room & the sun was shining.  It turned out to be one of those lunches where everyone laughed their heads off the whole time, a very fitting end to a hard time. I do love seeing long standing friends (I won’t call them old friends?).

We had a lovely hol too, batteries well & truely recharged.

Poor Peggy really has her hands full at the mo & we haven’t heard from Chelle or TC since, so I guess they aren’t able to come.

We could go for Embankment or Farringdon, whichever suits you best.  I think we should agree the meeting place by PM just to be safe.  Would 11.30/12 suit you?  Southern train guards have yet another strike planned for next week, the annoying wotsits, so I would like to be making my way back well before rush hour.  Other half is getting the trains about 4-30 & says many are doing the same.

xx

 

Hello ladies. 

Sorry for my silence. Life is pretty full on at the moment with my 2 little ladies, starting to do a little work and my continuation of appointments/courses (that i seem to be able to occupy myself so full time somehow!)

 

moving on is SO difficult isn’t it?

ive had some really down days and am really struggling with fatigue. Generally I’m ok and just getting on with things but I’m having to really try to pace myself. 

 

Ive been refered to gynae for an oopherectomy and psych for… Well cos I guess they think I might go crazy lol!

 

So glad to here the rest of you are at the end of active treatment- finally. It’s been a long road. I don’t think it will ever end. 

Look forward to catching up on this new thread ladies ??

Thanks Chelle.  It is lovely to finally be finished.  You’re not going mad, we’ve all just been through so much rubbish in the past year, that needing a bit of support here & there is nothing to be ashamed of.  I found counselling very helpful.  We missed you on Weds, but had a lovely lunch.  Talking to people who are further along this road than us, you do eventually feel like your former self again, it just takes a while. Evening fatigue is an issue my end too.  If I make it to 10pm without at least one snooze it’s very unusual.  I can fall asleep on the sofa, in the bath, anywhere really.  When we look at films on sky movies, I choose one & my OH says ‘we saw that 2 weeks ago’ … yep I’ve just slept right through it.  It’s official, i’ve turned into my mother! Have a good weekend.  TC hope you are doing ok. Suzy nice to meet you on Weds & roll on a week on Mon. xx

Got some rough news today. I was so excited that I was going permanently 4 days at work. It hasn’t been agreed and I go back to full time in November. Feeling frustrated today and a bit tearful. On the upside it’s only a week to my last treatment.
Chelle I have been to counselling and found it has helped a huge amount. I am feeling more like myself now. It’s very strange to think it’s almost over.
Bibi it was so good to finally meet up with you. Glad you got home ok. Xx

Really sorry to hear that Suzy.  What a bummer. Work life balance is even more important now.  My friend is a dietician & had to resign before they agreed to her reducing to 3 days a week.  Do you think they genuinely need you 5 days a week, after all they have been managing perfectly OK for 6 months since you went back, or is it just old fashioned work mentality i.e. No one will take you seriously unless you do full time. I would gave another go if I was you.  Don’t let the system grind you down.  My tennis elbow turned out to be capsule thickening around the tendon attaching to the elbow, probably due to tamoxifen grrrr. Not sure where that leaves my tennis career, but it’s another ailment I could do without.  Good luck for Monday xx

Suzy I am thinking your final one might be today.  If so, hearty congrats on making the finish line.  It’s all up from here (or at least that’s the theory).  I did a liver flush yesterday & I’m sitting here like a time bomb waiting to go off. Hope have something suitable planned later m’dear.  Did you gave another crack at PT working? xx

Hi Suzy

Just a quickie to say I have felt 100% normal this week for the first time in 18 months. I am 4 weeks on from final Herceptin. Fingers crossed you feel like that soon too. xx

Had my last 3 monthly onc check yesterday. Felt very anxious afterwards. Just want guarantees that it won’t come back. Hate this feeling in limbo. Just waiting for it all to start again. I know it’s just end of treatment worry but it’s a horrible feeling.
Glad you’re feeling so much better. I must confess to still feeling exhausted. Getting back to body balance class is helping as well as doing more baking. Xx

Hey Suzy sorry you’re still feeling tired.  Me too in the evenings.  Will it ever go? I remain optimistic because a friend of a friend said it took her 2-3 years! I seem to have stopped thinking about BC sometimes & it is no longer the first thought when I wake up.  Progress of sorts.  Wishing you a top Christmas my dear.  This time last year was one of my lowest ebbs, when I found my one & only balding patch (I was cold capping).  I was so down…all those hours in ice station zebra for nothing.  I remember crying all over one of the lovely nurses.  Compared to that I feel on top of the world now?. xx

Hi everyone,

 

So sorry for long silence. It’s not that I’ve not been thinking of you. Good to hear that you have both come to the end of your herceptin treatments Bibi and Suzy - many congratulations. Sorry to hear that work has been somewhat inflexible about your requst to go part time Suzy - that must have been a blow.

 

I’ve not had much chance to check in here as at the end of October my mum set fire to her house and ended up in hospital for several weeks. She was lucky to survive  and it was only thanks to her carers and the fire brigade that she is with us today. Anyway, I’ve had to spend a lot of time since then up in Liverpool taking care of things, dealing with social services, insurance companies etc. It’s not been fun but we are getting to some sort of equilibrium now. Alzheimer’s is such a bl**dy awful illness. 

 

I’m not feeling too bad although I’m getting really fed up with the hot flushes/night sweats now. I decided I was going to be philosophical about it being 52 and the menopause being imminent but after seven months of Tamoxifen I’ve decided I need to talk to my GP about some kind of help. I’ve been really lucky so far as apart from a little joint pain when I first get up in the morning I’ve not suffered too badly. I’ve been reluctant to start taking more medication but now think this can’t go on. I know my options are limited but I have read around here of people who take a certain antidepressent which helps with the flushes so I might ask for that. I’m going to make an appointment for early in the New Year.

 

Apart from that no complaints. I’m looking forward to having a few days at home over Christmas. 

 

So strange to think what we were all going through this time last year! 

 

Best wishes to all.

 

Ruth xxxx

Thanks for your kind words Bibi. Yes, it’s been a bit of an ordeal but the one good thing is that mum has fantastic neighbours who have helped us both so much. In fact, my mum is staying with some of them now. We had several rooms in her house redecorated but, because of the Alzheimer’s, she doesn’t recognize it now and does not want to stay there. Ultimately residential care is going to be the only way forward but I have decided to deal with that in early 2017 and give myself a few weeks off thinking about it all. 

 

Do you have any nice plans for Christmas? At least this year I will be able to have a glass of wine with Christmas dinner without it tasting terrible.

 

Ruth xx

Oh Peggy, I do feel for you, that’s a REALLY hard decision to make.  We eventually got there with my dad after he had repeated falls…just forward horizontally didn’t even put his arms out to break the fall.  The last fall was forward into a fire (fortunately not on at the time), & he gashed his head open on the mantel piece.  Looking at those places is tough, but it’s the best bad option.  Sounds like your mother may not be safe now too. They kept talking about tea dances…my dad was an outsidey, dog type of person & would have HATED that.  He had another fall & died before the deed was actually done, but it nearly broke my mother looking after him for 5 years.

 

I keep thinking ‘this time last year’ too.  Thank goodness we’re here looking back! I just think of feeling physically appalling, but my hub said the other day that he hadn’t expected me to be here by this year, which underlined how dreadful the effects are for all of the family.

 

Anyway, because we didn’t have a hol for 18 months, he decided to splash out & we are off to Mallorca on Boxing Day for some sun.  Don’t think it will be that warm, but looking forward to some beach walks. How about you? X

 

Bibi, it’s very depressing that once you talk to people about Alzheimer’s/dementia it becomes apparent how many people’s lives it touches as you oh so obviously know.

 

Great to hear about your hols anyway. I love Mallorca and I’m sure even it it’s not roasting hot it will still be beautiful. I think I’ll devote plenty of time over Christmas thinking about holidays for next year. I’m going to spend some time with my mum next week in the run up to Christmas then come back to London Christmas Eve to spend a few days with my husband and our two close friends who have given us outstanding support this last year or so. Despite everything we have a lot to be thankful for.

 

I hope you have a lovely time and that 2017 brings much happiness.

 

xx

Thanks PC.  Wishing you a wonderful Christmas & a healthy, happy 2017.  I agree about Alzheimer’s, I have lots of friends with affected parents & even one whose husband has presenile dementia.  Makes you wonder what’s ahead fir us all.  We know, of all people, that you just have to enjoy things whilst you can.  All the best m’dear xxxx