Sending you lots and lots of love Anita xx
@altoan Oh Anita, virtual hugs coming your way. How crappy life is being to you. Letās 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
Iām with you Anita. I just donāt post when Iām feeling blue but Iām feeling the same. Really flat and overwhelmed and defeated by chemo and the many many many next steps to come.
The edema of chemo hasnāt helped and Iām 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 Iām just this shaky, weak, swollen person. Everyone says āThe worst is over!ā but thereās more surgery/radio and drugs to come without the predictability and routine of chemo.
I really think chemoās effect on mental health hits hard at the end bit. You realise how big the climb out of the hole is and that youāre 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 donāt want to. I donāt 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 didnāt get the memo. X
@altoan Anita, itās totally understandable how youāre feeling with everything thatās going on. Hopefully the surgeon can give you certainty over whatās 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 whatās happened and looking forwards. Itās difficult chatting about these things with family and friends as you donāt want to upset them and also they donāt 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 ārecommendā 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 youād 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 wouldnāt say to family or friends.
@swk1981 I feel much the same too.
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 weāll have the energy to be able to climb that last bit to the top. But thereās 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 Iāve got that whole readjustment to do again and find my new ledge.
I also canāt imagine working the hours I was. Iāve managed so little work since chemo started. I think Iāll try to reduce my hours so my life is less hectic as my body and mind are frazzled.
Thanks, Iād always intended to have counselling but thought Iād 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 itās 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 ānoā in all those boxes on health questionnaires and now there will be one big massive āyesā plus the threat of ongoing diarrhoea, fatigue and suppressed immunity to fight
Very wise words @isthisreal , although Iām sorry you already had a health problem to manage. It is hard to imagine what the future will be like so I guess thatās 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 didnāt expect. Fortunately Iām old enough to consider retiring, although that wasnāt on the plan it will definitely come sooner than originally planned
I am fortunate in that weād both planned to retire a little early- Iām 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 donāt transfer until after radiotherapy. What I didnāt realise was that you have to go right back to GP referral back into the new Cancer treatment centre! So thatās 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 canāt 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 canāt 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 canāt 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 Iād 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 Iām getting exceptional just v nervous how long it takes to be re-referred, and thatās 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 doesnāt make sense to me that in these circumstances things canāt be more simple, maybe Iām being naive xx
Great news
@elle16 I expected a consultant to consultant phone call or email. The local GP to where we are moving wasnāt taking new patients - what happens then?
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, itās just really shocked me , sending you a very big hug and my admiration for you just gets higher, x
Iām sorry @gromit12 and @elle16 , my comments might have seemed critical of you, I absolutely didnāt mean that- in fact, I agree that a consultant to consultant referral should cover it. There will be some nonsense about budgets or waiting lists, we have that within Therapy, but with your diagnosis this shouldnāt happen should it.
@gromit12 nipple biopsy during my mastectomy showed cancer cells in the stromal tissue, so that has to be removed. This time hopefully the biopsy will show that chemo has killed them off but the only way to find out is to have the surgery. Itāll be quick and far more straightforward than Iāve already had. The Surgeon was lovely today, telling me how well I looked the old charmer!
@altoan donāt worry I didnāt see them as critical at all and Iām sure NHS treatment in Taunton will be fab too once Iām in their system!!!
I really didnāt see your comments as critical , more that maybe mine were , and I didnāt intend to come across ungrateful,
Hope the surgery goes well for you, 25th will be here before you know it