Hi Laura, I’ve got 6 more to go feels a bit relentless!
I’d definitely take Imodium before you go to Salisbury, I took everyone’s advice and did for our journey to Cornwall, I can’t really see the problem with it as the alternative would be a lot worse!!
@isthisreal I’m so glad you phoned them about your throat. It’s best to err on the side of caution. Pre chemo I think we often all just crack on with stuff and then you realise that you really need to notice any change! I really hope you are starting to feel better.
@belle1 and @elle16 hope you are both OK and are managing the side effects.
@isthisreal apparently everyone is scared of her! She did scare the life out of me at that initial meeting, and scared my sister in law too!! But I was just assertive today- she hasn’t spoken to me during chemo and I know v well what my body is doing, and being a nurse I am not going to be told to go to A&E with diarrhoea, when I have immodium- stroppy patient I am I also pointed out how many half marathons I’d done as it was her that told me I wouldnt be able to do them!!! I’d not heard of mammoplasty either- it’s a bit more complicated than a lumpectomy, but because my tumour is hiding behind a fibroadema, so quite a lot needs removing and there will be a large dent- so this cosmetically pulls the tissue together and pulls the boob up - lollipop scar around nipple and down breast. So may end up in overnight. Was a bit pulled as to whether to just opt for basic lumpectomy as at the moment I don’t care and just want it gone, but I may care 2 years down the line. But I was v clear I didn’t want reconstruction. So it feels like no one is looking after me at the moment - as still one more chemo to go!! Ho hum!! Laura x
@hc1973 Helen- when she was querying taking immodium in advance, I was so tempted to ask if she’d had urgent explosive and what fun that would be on the M4 She did agree in end, but said may cause constipation - bring it on, far better in a car!!! Laura x
Physically I am very slowly feeling better, although the neuropathy is very unpleasant but I’m nowhere near feeling well. I did manage to potter in the garden today with lots of sitting down in between. Emotionally, I’m definitely not myself. Wondering whether this might be the time to use one of the counselling services if I don’t manage to shake myself out of it in a few more days.
Im back to see the surgeon tomorrow, there were cancerous cells found behind my nipple during my mastectomy which have to be removed (how can they have survived the chemo?) Like @gromit12 Id like a date for that so that I can plan something better than hospital appointments! And I need to stop putting on weight before I burst
Apologies for sounding so negative- well done all of you on getting through the week. Anita xx
@altoan Oh Anita, virtual hugs coming your way. How crappy life is being to you. Let’s hope the appointment tomorrow gives some more clarity, I find I cope better with some certainty. And find someone to talk to- thats why these services are available to us. And I totally understand the weight issue, I feel like a blob, but you can deal with that at a later date, when emotionally you are in a better place. Hugs. Laura xx
I’m with you Anita. I just don’t post when I’m feeling blue but I’m feeling the same. Really flat and overwhelmed and defeated by chemo and the many many many next steps to come.
The edema of chemo hasn’t helped and I’m so inactive from chemo that when I do eat, I just balloon.
This last phase is worse than the early bit. I had fight in me and adrenaline. Now I’m just this shaky, weak, swollen person. Everyone says “The worst is over!” but there’s more surgery/radio and drugs to come without the predictability and routine of chemo.
I really think chemo’s effect on mental health hits hard at the end bit. You realise how big the climb out of the hole is and that you’re not sure you have the strength and you may have to settle to live just halfway up out of the hole, on a ledge instead.
I cried yesterday at the thought of working full time again. I don’t want to. I don’t think I can. I feel like I need a year just to recover from this year.
This phase is so hard everyone. So much to feel positive about but somehow my emotions didn’t get the memo. X
@altoan Anita, it’s totally understandable how you’re feeling with everything that’s going on. Hopefully the surgeon can give you certainty over what’s happening next and when, and most importantly to get rid of the last of the stubborn blighters.
I would say a therapist is really helpful, for all of us trying to get our heads round what’s happened and looking forwards. It’s difficult chatting about these things with family and friends as you don’t want to upset them and also they don’t fully understand.
The cancer charity at my hospital offers free therapy but the wait list is long so I decided to pay to see someone right away. They gave me a list of the therapists that volunteer for them, but were a bit reluctant to ‘recommend’ them as such, but I really wanted someone with experience in cancer and chemo. You can then look them up on the BACP website to see if you think you’d get along. I speak to my lady online every couple of weeks and although it is usually a lot of tears and is quite tiring, she helps me think through things and get things off my chest that I wouldn’t say to family or friends.
I love the analogy of settling on a ledge rather than climbing all the way out. We can have a good rest there and maybe in the future we’ll have the energy to be able to climb that last bit to the top. But there’s no rush we are allowed a good stop there to catch our breath.
I developed a totally unrelated chronic health condition a decade ago, and it took me a lot of time to fully accept that my life would now be lived on a ledge in a hole rather than the whole planet. But once I accepted that, I became happier and made it the best ledge it could possibly be. I do feel unlucky that I’ve got that whole readjustment to do again and find my new ledge.
I also can’t imagine working the hours I was. I’ve managed so little work since chemo started. I think I’ll try to reduce my hours so my life is less hectic as my body and mind are frazzled.
Thanks, I’d always intended to have counselling but thought I’d get through more of the treatment first. My plan being to take it up when I was physically stronger in anticipation of a return to work (and normality) being emotionally challenging. But it’s not the first thing to surprise me about this nightmare!
Yes! Exactly this. I am a strong person, I have coped well, but I hate this weak, shaky, breathless version of me. I used to tick “no” in all those boxes on health questionnaires and now there will be one big massive “yes” plus the threat of ongoing diarrhoea, fatigue and suppressed immunity to fight
Very wise words @isthisreal , although I’m sorry you already had a health problem to manage. It is hard to imagine what the future will be like so I guess that’s why we are only looking to get through a week (or day) at a time. My work with babies who have disabilities from birth means I appreciate the challenge of finding yourself in a different place to the one you were expecting, but this has given me an insight into the parents world that I didn’t expect. Fortunately I’m old enough to consider retiring, although that wasn’t on the plan it will definitely come sooner than originally planned
I am fortunate in that we’d both planned to retire a little early- I’m 63- as my mum died unexpectedly last year and left me a house. But our retirement plans have been somewhat stuffed currently! The day I retired I missed my retirement presentation as I was at chemo pre assessment clinic!! Looks like we should exchange on our dream house by the sea in Somerset next week, but then life gets complicated as treatment all in Reading!! I want to complete my treatment here- oncologist agreed yesterday- that I don’t transfer until after radiotherapy. What I didn’t realise was that you have to go right back to GP referral back into the new Cancer treatment centre! So that’s where you can fall into a hole. So having to drive up for bloods, 5 minute herceptin injections, appointments, echo- wil be spending a lot of time on the M4! But I am v excited to be getting my new house by the sea it has given me something to look forward to.
Your dream house sounds amazing, look forward to all the wonderful new memories you will be making there
I can’t believe how crazy it sounds that you will have to go back to a new referral once you are ready to change your treatment to your new area, I just can’t get my head around it, you are not changing countries, absolutely mind boggling. All the access to your notes and details just behind one tap of a button and they can’t do it, my mind is blown xxxx
But in praise of the NHS - I came out from my clinic with the surgeon at 11.30 today and by 3pm I’d had two phone calls - pre assessment on Tuesday and surgery on the 25th Back on the merry go-round!
@altoan fabulous news what surgery is planned? In no way am I complaining about the NHS, as service I’m getting exceptional just v nervous how long it takes to be re-referred, and that’s providing I can get a local GP to refer into Taunton - and herceptin needed every 3 weeks!!
Ditto, I have had no concerns either and am hugely grateful and thankful to the NHS but it just doesn’t make sense to me that in these circumstances things can’t be more simple, maybe I’m being naive xx
Must be awful having this on top of everything else, moving house is stressful enough without cancer treatment without travelling up and down the m4 to complete it and without the worry of who, when and where next, it’s just really shocked me , sending you a very big hug and my admiration for you just gets higher, x
and what fun that would be on the M4 
Physically I am very slowly feeling better, although the neuropathy is very unpleasant but I’m nowhere near feeling well. I did manage to potter in the garden today with lots of sitting down in between. Emotionally, I’m definitely not myself. Wondering whether this might be the time to use one of the counselling services if I don’t manage to shake myself out of it in a few more days.
it has given me something to look forward to.
Back on the merry go-round!
what surgery is planned? In no way am I complaining about the NHS, as service I’m getting exceptional just v nervous how long it takes to be re-referred, and that’s providing I can get a local GP to refer into Taunton - and herceptin needed every 3 weeks!!
x