Very good point @buggeringon !!! Yep I’m worn down I think, half way grump hump. I finished an edit and sent it off this morning now I’m tucked up in blankets in front of TV hoping to doze off. It’s so cold! Ah ok @emsd2025 got everything crossed for her xxx
Good luck for everyone’s treatments and recovery this week xxx
I keep thinking about your lack of fingerprints, a good potential plot line - terminal cancer pt, scores to settle - no fingerprints or hair to drop dna! Xx
I think fatigue increases the further into chemo you are - but I fair chunk of your exhaustion is likely to be the infection- your body is working really hard, drink lots of fluids and nap lots to help it out xx
Yes!!! On my radar xxx
@emsd2025 I am so sorry to hear about your Mum. I really hope they can get a plan together quickly and move forward. Do you have other family members to help ease the load? Take care of yourself too, its important you don’t get tired from travelling, I hope you can manage it OK and support your Mum. Thinking of you 
@story1 yes I think that sums it up - taking longer to bounce back but as long as we bounce back before the next treatment! Good luck with treatment this week you are nearly through the weeklys!! And you always look lovely in the pics you post, there is no ugly in your lovely!!! And good luck with your edit! Keep cozy and warm and wishing tomorrow will be a better day for you!! Hopefully your son can enjoy himself and the amazing experience he has in front of him in Japan.
@buggeringon Good luck with your echocardiogram. I hope you get more feedback than I did when I asked if for it at the end of the test. Response: well your heart is beating as it should, I am not calling a doctor in and I am letting you go home ! Anyway 4 weeks later I got the results and all was OK. Hope yours is too.
@anim4l Sorry to hear you are still feeling exhausted. Take the time and listen to your body, take the rest you need. The elves will be a welcome distraction I am sure. How exciting. I miss those days of young kids, mine are all adult kids now. Still very much fun but different to the child like excitement of Christmas. The big debate in our house is when can the tree go up. Husband says weekend (before Christmas), two of our kids are heading home next weekend so that is a contender, but who knows 
We bought a home blood sugar test kit yesterday and my glucose levels were back up to to 6 yesterday afternoon so worry over the steep drop gone. I was wiped out yesterday but it passed by evening, I think that was just general fatigue from chemo rather than glucose related.
Treatment went well today. But when nurse came to take the canula out she noticed a red line running along the vein and up the arm but it started just away from the where the cannulae went it. After a few different people looked at it the conclusion it was phlebitis - inflammation of the vein, within an hour it had disappeared so all good. They will call me tomorrow to check there are no issues.
But I have just started with a bit of a rash on inside of knees and back of elbows. It started early evening. I had pembro today, mid morning the treatment started. I think it is pembro related. Hoping I can manage it with anthistamine and E45 or similar. Anyone else had the pembro rash?? Oh the joys……….
So pleased treatment went ok today @cathie2 - yes my dad and sister are brilliant, but I just wanted to be there to see them all. I’m pretty itchy everywhere dunno if that’s Pembro as I haven’t had this week’s yet but got behind knees too, I have eczema anyway so hard to say 
What a good idea @buggeringon, I’m still loving the audiobook, I really like Kelly @story1
Am spitting knives. Got to unit at 10 am, won’t be out until at least 7pm. Slow, slow,slow. Suzipads and ice packs completely thawed ages ago. More neuropathy here I come.
Fucking furious frankly. Moan over
Oh god @buggeringon completely get it! Why the delay?
Too few staff and too many patients on double and triple whammy weeks.
Feel sorry for the nurses, at least one is going to have to stay late with me.
Evening all, guess who is tripping on steroids??? No additional dexamethasone this week though so for one night only… bags of energy… ah @cathie2 youre very lovely to say that xxx what we see in the mirror takes some getting used to but the goodness always shines through. I hate it when I swell up it’s just bad luck I guess, I’ve tried buscopan today… hope the rash isn’t itchy, what cream have you tried? I swear by the aveeno oat one it’s so soothing, I started to get rashes on hands and feet but the oat cream cleared it up. Chemo went well I slept through the whole thing. Taking advantage of energy before the crash and going to Cambridge tomorrow to look for Christmas present for me from hubby. No clothes obvs. Unless maternity… @emsd2025 the itchy thing now you mention it I do scratch my arms, is it nerve related do you think? Like tingling? Who bloody knows what causes what, honestly I lose track of the nasty shit they pump us full of. So I suppose I should celebrate last paclitaxel!!! 12/12 I could murder a glass of wine!!! Straight onto EC Tuesday x lol. I’m thrilled you like Kelly, she’s my inner hero xxx @buggeringon ffs!!! 9hours!!! What the actual… I hope you’re home now and it all went well xx
Thinking about everyone in our little September group especially those who haven’t posted for a while, sending love to all of you, I was so confused at first by all the names that I made little notes to remind me when people had surgeries/or not and small details that stood out so I could remember everyone’s stories, I often flick back and wonder how everyone is doing, this is a safe space for me (unlike fb etc) it’s nurturing and uplifting and I feel grateful to be here, amongst women who have not chosen to be here, we didn’t seek this out, but we share the realities of the shitty titty committee because, for me, every time I do, I feel connected to the only people who truly understand what’s it’s like. Ups and downs, it just makes this fucking disease more bearable 
Rachel xxx
Thanks @story1
I’m still seething because it seems that the nurses have pushed back about sharing my blood results and now the oncologist wants to chat to me first (after their holiday). Apparently “she’s worried that I get the results and then use dr google and make myself anxious because that’s what other patients do” which is word for word what the main nurse who has a problem with sharing the results has said to me.
I did f and Geoff when the unit sister told me! Told her that I’m an ex nurse, I’m not a fucking idiot, I only trust good sources of information and withholding information causes me anxiety and makes me angry. Also threw in a bit about withholding info being disempowering and why am I having stereotypes applied and being told I’m anxious when all I want to be is an active participant in my own care.
I also arrived to be told that the high dose vitamin D was a no,no. Got quite angry at this too and pointed out GP had liaised with a specialist pharmacy and been in touch with oncologist and it seemed that the team didn’t seem to want to prevent permanent disability through neuropathy. The pharmacist came up and having realised that it was prescribed and dispensed said it was ok after all.
This is a crappy enough experience, without the staff trying to disempower you at every turn. I’m making notes in readiness for the oncologist appt.
Hope your shopping trip is a success.
I agree, this group is amazing. Love to all xx
Holy crap @buggeringon what an absolute shit show, honestly
@buggeringon What a complete nightmare. Do the hospital not have a freezer to put your packs in? if they are not supplying the ice mits for patients can they not let you use a freezer? What a delay for you. Complete and utter nightmare. I don’t understand why they will not share blood results. All you want to do is know what areas you need to focus on and that helps them. So ridiculous when you want to do the best to ensure you don’t have issues that then become a problem, that they need to then sort and treat, when some things could easily be avoided in the first place by a willing, informed and engaged patient who is keen to take an interest in her own care. I am so sorry that you are going through this.
Does your hospital have maggies centre attached to it? I wonder if they might have a freezer? You can’t be the only patient who has this issue?
@story1 love it – ‘shitty titty committee’. Enjoy Christmas present shopping! What a lovely distraction. And congrats on finishing your weekly yay. 
I ended up having to call the chemo hotline Monday night. Rash spreading down legs, up arms and onto back and front. They said to take piriton as that is what they give with chemo. Plus use moisturiser and they would call me in the morning.
Husband and son went out at 9:30pm in search of Piriton but couldn’t get it in the 4 supermarkets open at that time so I took Loratidine which I had anyway as I needed something. I tried E45 and cetraben, but found savlon really helped soothe it in the night but I still could not sleep Monday night.
Chemo called me next morning and wanted to see me. Spent whole day back at the Christie.
They were more concerned that I had a high temp during the night – even though it had come down by the morning. They were concerned about infection and were prepping me for IV antibiotics.
I understand their protocols and reasons for concerns. But also as I could not sleep I got cosy on the sofa with Netflix, warm fleece and dressing gown. Very snug in the hope I would drop off and I think I was too layered up – hence a false temp reading.
I managed to convince them I did not feel unwell and I did not think it was an infection and instead the focus should be on the rash and not the temp. My temp in the hospital was normal.
I really did not want another canula. As I have lymphodema in my other arm, they can only use one arm for bloods and the chemo. So veins are taking a hammering and I am trying to avoid a picc line or port. Just two more weekly’s to go and then my poor veins will get a bit of a break on the three weeklys.
We agreed to have bloods done to rule out infection. Upshot no infection.
They prescribed piriton + a steroid cream + Cetraben (similar to E45).
It completely calmed down by end of Tuesday.
I think the piriton really helped and I only used the Cetraben. Not needed to use the steroid cream thankfully. So relieved. Next step would be oral steroids and then they look at reducing treatment dose. So all back on track.
@emsd2025 how did treatment go? Hope your Mum is OK and you are getting answers.
Good luck to anyone having treatment tomorrow or Friday.
Hi everyone - so sorry to hear about this @buggeringon what a nightmare and also surely you’re entitled to the information!! Totally agree this group is amazing. So sorry to hear about the rash @cathie2 but so glad to hear it’s settled down. Mum still in Boston and we don’t think we’ll have an answer about type of surgery until sat - normal stent is a no go due to position of the aortic aneurysm so it’s either super stent at a diff hospital but 6-8 week wait for the part or open surgery if she’s deemed fit enough after her stress echo tomorrow (which didn’t work for some reason yesterday). Some muppet of an F1/2/reg came round yesterday and told her a normal stent would likely be possible so I’d quite like to ring his fucking neck! However, mum is fine - had to do a walking up stairs test today and gave up after 3 flights as the nurse with her was knackered
Thanks @cathie2
There’s no freezer on the unit and the maggies centre is a bit of a schlep away. I suspect they may try and be a bit prompter with my treatment moving forwards- I made it clear that I expected harm in the form of neuropathy to arise because of the delays. I am however positive that the vitamin d supplements will rectify with time.
Nobody I’ve spoken to can understand why they’re withholding my test results. It goes against the nurses code of conduct and so many principles of good care. You’ve expressed the issue very eloquently - I’m going to borrow some of the wording for my complaint letter.
Well done on advocating for yourself re non-infection. Glad they listened to you, rather than just giving you unnecessary antibiotics.
Glad the rash has resolved xx
@anim4l hope you’re feeling better xx
Hi @buggeringon I’m just popping in from the October thread. My hospital uses an app called MyChart where I can freely see all my results: bloods, ecg traces, etc. It can’t be the only hospital that uses this app, so I don’t know if that is helpful to your argument for greater clarity.
Thanks @dilly it does add strength to my argument. I’m going to rope in PALS, I’ve had enough. Xx
It’s disgusting @buggeringon i can see my blood results anytime I want. I get 2 sides of A4 every week (bc of the immunotherapy I’m on they test everything) it’s your body!
@cathie2 well done for standing ground, ffs this shouldn’t be a battle! It’s as if our own care is some kind of mystery that only medical staff understand, bollocks to that, we know our bodies best.
Anybody on keytruda develop redness around joints? I overdid it in Cambridge yesterday (out 3 hours) so hoping it’s that and not inflammatory arthritis starting from immunotherapy. It’s on my lateral ankle bones and a couple of knuckles. Rang nurses and they’re happy it’s not painful or hot, need to rest and keep an eye on it. Slathering on tallow and made a turmeric latte! Had ibruprofen and feet up now (torture in itself) if it swells or spreads I’ll have to go on steroids…
Can I just have 1 week without new symptoms?
Have reevaluated some limits today, cancelled a few things this week because I know it’s the right thing to do but really pissed me off x