@norts 
sorry no bench slap emojiās I can find. Congrats!
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@norts - woohoo!! Thatās fantastic !! Well done 
@naughty_boob - Iām sure I heard some one else refer to larva bum too but itās definitely needed as a tone of phrase 
I either felt like I was dying (constipated) or my poor rear was on fire 
thereās no in between ā¦
@salbert - how is the splinter ?
@hasnae87 - I definitely recommend getting the laxido into you before next chemo x Try having a warm bath for the sore rear too x chemo is the gift that just keeps on giving isnāt it 
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Thank you so much for the advice, I was going bonkers just two hours ago and I decided to go and buy my son a toy and he made me regret it as he throw a tantrum most of the time so now I am smashed and canāt play with him and begging him to let rest.
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Godness me, so many posts i can hardly keep up!
With regard to moisrurizers i used some from Aveeno range for sensitive skin, the ones with oatmeal that my onco recommended and even presribed a large bottle for me when i had rashes on Paclitaxol.
I agree that larva bum was the worst of the side effects and i took Loperamide every day whilst on paclitaxol. Still have a bit of diarrhoea one or twice a week whilst still on Phesgo. However i have now FINISHED treatment! Yeay last phego was yrsterday so i celebrated with buying myself a new jacket. I also had zolendronic acid yesterday but so far ok, apparently the trick is to drink lots the day before, on the day and the day after.
Welldone @norts for also coming to the end.
Sorry @hasnae87 you are having a tough time. My husband took me to nearly sll my appointments as we dont really have any regular public transport near us, but there were a couple of times i had to rely on friends who were only too willing to help as it was something they felt they were able to do rather than just send kind words or flowers. However if you feel up to taking public transport i would recommend you wear a mask, but make sure its at least an FFP2 or N95 so it is effective rather than a baggy blue. At least Covid made us aware of decent masks. I think it was @naughty_boob who like myself wore a mask in public places.
At this point i would like to thank @naughty_boob for all her great help and support, plus i feel like my old friends @salbert and @arty1 shoyld get a mention for cheering me up and sharing stories. I dont know how i would have managed without this thread. Im beginning to sound like i,m giving a cheesy oscars speech so i will shut up now about that.
I feel i am about to start a new chapter in my life and i am just going to throw myself into it and not put things off for āone dayā. The next big thing is that my daughter who is now 40 (!) is having a baby in july and although i am already a Nanny to my sonās little girl this will be different as she lives round the corner and she will be a single mum (by choice) plus she hss long covid so will need a bit of help. I will be her birthing partner. I think i might need another forum somewhere for help with this! I know she is a bit mad doing this but i think she thought like me just get on with things and try and get the most out of like, dont wait for things to happen. So iām going to be a very involved Nanny, but hopefully still have time for me.
Best wishes
Penny
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Yes @pennyp I wore FFP2 mask in public while on treatment and still carry one in my bag if Iām in an enclosed space for a long period or somewhere like a GPās waiting room. Some of my ongoing medication means Iām still at higher risk of infection.
You are so welcome. It is a pleasure to support you all.
Congratulations on being a nanny for the second time later this year, something so lovely to look forward to.
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@salbert yes perky boobs are a bonus, thank goodness there is one good thing coming out of this trauma, apart from surviving of course. Good luck for Friday and try and tske it easy afterwards. Iāve recently read The Cancer Roadmap by Liz OāRiordan, it was fasinating stuff regarding how cancer develops, risks and benefits of treatments, statistics. She explains the science really well, although i did have to read some bits twice. Iāve also read The Ayurvedic Approach to cancer by Dr Sam Watts, which gives another view to moving forward to good health and i am certainly taking on board a lot of his ideas, without going so far as taking any supplements.
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Hello lovely people. Hope you are all having a healthy and relaxed week. I just thought Iād come in here and update you all lovely people regarding the PALS situation we have been going through. So after waiting for 10 working days to hear back from the PALS team, we dropped in an email to ask them about the update and immediately got an apology saying they are fast tracking it now. We had a health follow up meeting with the oncologist yesterday and to our surprise the head doctor, who has never once in the past one year bothered to meet us was present during that meeting. She also ensured the breast cancer nurse came in while we spoke. Needless to say she was the most condescending and nasty woman we have ever interacted with. She went on to say you have a right to complain but donāt you feel we have treated you so well in all the last few months. It seems you have the ābrain, knowledge and understandingā to speak for yourself for a āminorā error on our part. It was just a dealy and that is how we will respond to the now unnecessary paperwork trail you seem to have created and keep a close āeyeā on you. We were super patient and listened with a stern face and felt the most intimidated - a bullying of sorts. She barely talked about the blood tests and asked about overall health of my partner. Surprisingly we are even more determined to now make sure this rogue team of doctors does not go unnoticed and we are waiting to hear back from PALS formally. Itās been a very vey emotionally tiring and helpless day overall and we are just out of words on how these doctors exist. They hate it when patients have a voice, are reasonably sensible and not suffering from a chemo brain. I wonder how they sleep at night with such morals and an unkind heart.
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@sms I thought this was going to be a positive update when you started saying the head attended your appointment but my jaw dropped at the rest. What a nasty piece of work. I would definitely escalate to the ombudsman if you have the energy to do so. Iāve never done it myself but Iām happy to help if you need an extra hand to research and follow up because Iām just so angry at the way you both are being treated. https://www.ombudsman.org.uk/
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Thank you @kartoffel . We really hope it doesnāt come to this, but thr manner in which we have been treated and humiliated, it seems this might be a possibility going forward. For the first time in many many days, I saw my partner so scared and disappointed, it felt like our self esteem being trampled down by people in power. I want to take this on and continue but for now my partner is feeling uncomfortable as she says she doesnāt have the power to do anything anymore. As it is the cumulative effects of the treatment are beginning to hit us and our lives in a manner we did not expect. Physically, emotionally we feel so so tired. But I am going to wait it out until and if she feels upto it and then we will be more than happy to take it to the ombudsman if things come down to that. Thank you so so much for letting us know about this option. We may get in touch with you if you will be willing to help us at that time and your schedule allows for the same. Really really appreciate your support and guidance. We do not feel alone , thanks to this community and especially people like you who are so helpful and understand what we are going through. Sending you health and healing vibes.
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@sms I can barely believe I was reading that awful account. Sadly if youāve got a bully heading the team then unfortunately thatās the attitude thats pervading the whole service. Anyone good will get out and work elsewhere. I am so sorry and you are so incredibly brave. Dare I ask how your partner is with the treatment itself? I do hope you can snatch some occasional nothing to do with cancer moments. Love and strength to you both.
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Dear @carrie5 - This is heartbreaking for us too. What we have realized it that if we dare to speak and stand up for ourselves it makes the bullies very very very uncomfortable. For them we are just a demographic but we are real people with feelings and dare I say a working brain. The way this team is sticking together to cover up their asses is mind blowing honestly. My partner is just getting through, we are very tired, it is a constant game of just waiting. Maybe this is a phase but what choice do we have.
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@sms do send a DM if you want to chat through anything. Iāve got a lot of experience with complaints to government agencies and ombudsmans (unfortunately). One thing I might suggest if you arenāt already doing so, keep a notes doc with dates/names & short description of what was discussed. In the event that you do go to the ombudsman, theyāll want to see the efforts youāve made to resolve your issue through the normal channels before they will be able to step in.
Alternatively it would be maybe a good idea to contact your local ICB to understand what your options are to continue treatment elsewhere. You can find your local ICB here: Find your local integrated care board (ICB) - NHS Theyāll be the ones that can talk you through your choices about what you can and canāt do. More info here about NHS choices: NHS England Ā» Choice
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Thats a very good idea to keep notes! I think we will start jotting down everything before we forget the details of that meeting. I will dm you, once we are in the mindspace to do so. Thank you 
You are a saviour!
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Congratulations on finishing your last phesgo injection and happy to hear that you will be nanny again, there is no one better than a mum to care for her daughter and sure you will go through it.
I am not sure about public transportation yet still deciding but maybe taxi one time or two maybe will help if I am so fed up of staying at home, my husband dropped me most of time to my appointment except if he is working and he never being with me yet to chemotherapy as 6 hours is bit too long for him but this time my sister is coming and she will be with me for my 4th chemo next Thursday.
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Sorry to hear that they keep treating you this way and a good thing that you are not turning a blind eye on it.
Donāt lets them ruin your partner treatment journey and keep going.
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Gosh I want to echo what has already been said. My jaw dropped as soon as I read how this top doctor spoke to you. Just wow.
I hope you get some positive news from the PALS team.
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Thank you for your encouraging words @hasnae87 . The NHS runs on our taxes and there is no reason for any of these doctors to treat any person who walks through their doors the way we have been treated. Every action has consequences and we will make sure they know that.
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@naughty_boob it is sad and disheartening. We are also hopeful that the PALS team gets back to us with something better and we donāt need to escalate it. With all that people in treatment and their families go through, this is the last thing that should cause an inconvenience to anyone. Doctors need empathy and compassion before anything else. Wouldnāt it be wonderful if they remember to be basic decent humans before acting like the doctor gods they wish to be
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Hi all,
@sms sorry to hear about your negative nhs experiences!
I need to offload a little, saw my surgeon today and the news wasnāt great. I do have a met on my spine but the rest of the PET scan was clear apparently. However, from my mastectomy there was a lot of residual disease in the tissue, at least 3 lymph nodes had cancer in them and they still have some to test. I also have an area of red skin above the mastectomy area that he took a little biopsy from which also is cancerous so thatās still on me. I need to have targeted radiotherapy to the spine, radiotherapy to the armpit and chest, plus Iāll be joining the Kadcyla gang. I am so upset and scared that theyāre not going to be able to cure me 
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@sooz1 really sorry itās not the news you needed to hear. Thatās very tough. Virtual hug and just try and take it one bit at a time and donāt over think. I know thats much easier said than done, accept all the help you can get.
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