April 2024 chemo starters

Sending you lots and lots of love Anita xx

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@altoan Oh Anita, virtual hugs coming your way. How crappy life is being to you. Letā€™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

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Iā€™m with you Anita. I just donā€™t post when Iā€™m feeling blue but Iā€™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 hasnā€™t helped and Iā€™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 Iā€™m just this shaky, weak, swollen person. Everyone says ā€œThe worst is over!ā€ but thereā€™s more surgery/radio and drugs to come without the predictability and routine of chemo.

I really think chemoā€™s effect on mental health hits hard at the end bit. You realise how big the climb out of the hole is and that youā€™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 donā€™t want to. I donā€™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 didnā€™t get the memo. X

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@altoan Anita, itā€™s totally understandable how youā€™re feeling with everything thatā€™s going on. Hopefully the surgeon can give you certainty over whatā€™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 whatā€™s happened and looking forwards. Itā€™s difficult chatting about these things with family and friends as you donā€™t want to upset them and also they donā€™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 ā€˜recommendā€™ 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 youā€™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 wouldnā€™t say to family or friends.

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@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 weā€™ll have the energy to be able to climb that last bit to the top. But thereā€™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 Iā€™ve got that whole readjustment to do again and find my new ledge.

I also canā€™t imagine working the hours I was. Iā€™ve managed so little work since chemo started. I think Iā€™ll try to reduce my hours so my life is less hectic as my body and mind are frazzled.

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Thanks, Iā€™d always intended to have counselling but thought Iā€™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 itā€™s not the first thing to surprise me about this nightmare!

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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 ā€œnoā€ in all those boxes on health questionnaires and now there will be one big massive ā€œyesā€ plus the threat of ongoing diarrhoea, fatigue and suppressed immunity to fight :pensive:

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Very wise words @isthisreal , although Iā€™m sorry you already had a health problem to manage. It is hard to imagine what the future will be like so I guess thatā€™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 didnā€™t expect. Fortunately Iā€™m old enough to consider retiring, although that wasnā€™t on the plan it will definitely come sooner than originally planned :slightly_smiling_face:

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I am fortunate in that weā€™d both planned to retire a little early- Iā€™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 donā€™t transfer until after radiotherapy. What I didnā€™t realise was that you have to go right back to GP referral back into the new Cancer treatment centre! :scream: So thatā€™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 :blush:it has given me something to look forward to.

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Your dream house sounds amazing, look forward to all the wonderful new memories you will be making there :house_with_garden::ocean:
I canā€™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 canā€™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 canā€™t do it, my mind is blown xxxx

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But in praise of the NHS - I came out from my clinic with the surgeon at 11.30 today and by 3pm Iā€™d had two phone calls - pre assessment on Tuesday and surgery on the 25th :face_with_peeking_eye: Back on the merry go-round!

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@altoan fabulous news :grin: what surgery is planned? In no way am I complaining about the NHS, as service Iā€™m getting exceptional just v nervous how long it takes to be re-referred, and thatā€™s providing I can get a local GP to refer into Taunton - and herceptin needed every 3 weeks!!

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Ditto, I have had no concerns either and am hugely grateful and thankful to the NHS but it just doesnā€™t make sense to me that in these circumstances things canā€™t be more simple, maybe Iā€™m being naive xx

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Great news :heart:

@elle16 I expected a consultant to consultant phone call or email. The local GP to where we are moving wasnā€™t taking new patients - what happens then? :scream:

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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, itā€™s just really shocked me , sending you a very big hug and my admiration for you just gets higher, :revolving_hearts::muscle:t3: x

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Iā€™m sorry @gromit12 and @elle16 , my comments might have seemed critical of you, I absolutely didnā€™t 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 shouldnā€™t 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. Itā€™ll be quick and far more straightforward than Iā€™ve already had. The Surgeon was lovely today, telling me how well I looked the old charmer!

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@elle16 thank you :hugs:

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@altoan donā€™t worry I didnā€™t see them as critical at all :hugs:and Iā€™m sure NHS treatment in Taunton will be fab too once Iā€™m in their system!!! :rofl::rofl:

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I really didnā€™t see your comments as critical , more that maybe mine were , and I didnā€™t intend to come across ungrateful, :heart:
Hope the surgery goes well for you, 25th will be here before you know it :smiling_face_with_three_hearts:

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