Cancer Support Thread #80 Newbies Welcome

[HumphreysCorner]

Welcome everyone old and new. Feel free to post a quick update to help new and old follow.

HC x

@NewlyDiagnosed hope your recovery from surgery is proceeding smoothly. How old are your kids?

@TopOfTheCliff congratulations on the last of the injections and here's to a long and colourful retirement

@HauntedDishcloth how is Kadcyla 3 going for you? I had n4 on the 27th and was quite poorly for a few days 30-3. The cough had calmed down a bit but is worse again. I have a chest CT on Friday for that. It's just such a bad time to be coughing so much! I need a t-shit: 'Don't worry, it's cancer not covid - it's not contagious!'.

Really struggling to get organised with the work-sick balance and have made a calendar with all my deadlines and treatment dates to get a better handle on it.

@Acinonyx2 well I refer to them as kids but they're both teenagers (17+14). Not very talkative (neurodiverse) so I was a bit worried, one tends towards extreme bouts of anxiety, the other will internalise problems until she can't function any more... But all good for now and they can see I'm doing okay, they have scientific minds so explanations of the facts and figures work well.

Agree re: the work/sick balance. At least I have no deadlines, except the start of term when I'm really busy happening right now, so I feel I need to be responsive to queries/urgent problems (IT). However right now I'm feeling okay do that's all going fine, although really I have no-one who can step into my shoes.

Hi everyone, I've been following the thread but haven't posted for a few weeks. Welcome to those newly finding themselves here.

I'm now recovering from my second chemo which hit me like a ton of bricks just like the first, though I am more tired now than I was at this stage in the first cycle, presumably a bit of a cumulative impact. I'm trying to keep working when I can but I struggled going back to work this week. I'm anticipating needing to give up work completely at some stage, and just return after the chemo is finished, which will be just before Christmas. I may just sleep through the holidays even though I love Christmas and have a 5 year old which makes it very magical.

I wanted to ask others also going through chemo if you've been offered a Covid booster and a flu jab? I got a letter today saying I'm eligible for a booster but my GP surgery isn't offering them yet, likewise the flu jab. Are there any options for getting either/both outside the GP system?

Hi Sewing Bees. I am in awe of anybody who works through chemotherapy. I was signed off from day of diagnosis onward.
This week I emailed my GP and asked if they could give me a third dose of Covid vaccine as I meet the criteria. They rang me back with an appointment for next Monday at the local racecourse. Is there a central vaccine hub near you?
Currently a bit bruised as I went for a cycle club pub ride last night. It escalated into a full on muddy cyclocross ride through a wood in the dark and I fell off twice. I laughed all the way home, even covered in mud! I find after surviving cancer treatment nothing daunts me now.
Keep going folks you can get through this!
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TopoftheCliff You are right about keeping going and doing what you love. I have found a new bravery and have been doing things that I wouldnt do before, because whats the worse that could happen now !

@NewlyDiagnosed my dd is 16 so between yours. It's been a year now, and she has never commented or asked any questions about my health. I keep her informed and have occasionally attempted to see if there is anything lurking underneath the apparent indifference but it's a lost cause. We get along fine and I don't actually want her to worry or be upset - but I do find her total lack of reaction or interest a bit unsettling. I must say that dh is a bit the same Then again, I probably occupy all the ruminative-existential angst space in the household and it wouldn't work well for there to be any more.

@SewingBees I intended to work through chemo but went sick (to after surgery) after my first week cycle one! Dr will be unsurprised mine was happy to send and update my certificates no further questions.

I had a generic email about a covid booster but nothing more since.

@TopOfTheCliff When I'm done I will get by bike out and service it. I don't have enough platelets to risk a fall just at the moment! Got any more fun and games planned?

I was on the original shielding list because I was mid-chemo at the time. It doesn't seem to have been revised, although there must be many more in need than me.

I've just had a generic letter, from the new minister of health, telling me that shielding has come to an end but I'm eligible for a booster jab. Then had a text from GP's surgery with a link to vaccination hub. Appointments available from next day. I'd just had my flu jab done at my local pharmacy but no prob about covid jab 2 days later. Some pharmacies have covid boosters, but not mine.

Fortunately, no side effects from either of them.

Thanks everyone for your replies about jabs. I think I'm going to call my oncology unit tomorrow and ask if they know anything about covid booster centres in my area. The interminably long recorded message at my GP surgery is very clear they're not yet set up for covid boosters or the flu jab so no point waiting to get through to a receptionist.

Acinonyx2 - Then again, I probably occupy all the ruminative-existential angst space in the household and it wouldn't work well for there to be any more
Wonderful description ,are you me ? .Interestingly my son ,in his 20s when I was dx ,was similarly laid back . Partner very pragmatic and chose to be rather uninvolved .

( oesphageal cancer 8 years ago ,doing well now )

Hi All,
Dipping in again, I had my first chemo earlier this week - feeling the affects now in that I feel light headed and a bit worn out. Enough to do the bare minimum at home but have not got the head space for trivial crap if that makes sense.
I go back each each week for more immunotherapy for the day but chemo is every 3 weeks. I've had some bloods taken today, I'm not sure what for but I assume to check important levels of 'stuff' before I go in again Monday.

I haven't said much to my DD, she's 12 but if I said cancer to her she'll flip out, so I've just used language enough along the lines of 'I need treatment at hospital for a bit to make some lumps go away.' she's happy enough with that and asked a few questions but I don't want her having her young years tarred with memories of Mum having cancer.

Can anyone offer any advise regarding a PICC line? I thought I was given some on here before but can't seem to find it, (brain fog perhaps!) they had a small issue with getting the canula in on Monday, second attempt was fine but I'm just pondering if it will be easier to have it in one vein vs knackering several veins for each treatment round.

I'd need a premed of some such before they put it in, I am so crap with needles and procedures 🙄.

Keep on soldiering on everyone x

@PaddingtonStareBare as I said above I was quite anxious about telling my DDs, and got some advice from the cancer nurse at one of my appointments. She also gave me some leaflets, a generic one by Macmillan "Talking to children and teenagers when an adult has cancer" and it had lots of useful pointers for different ages and situations. She also had a "what is cancer" booklet put together by www.fruitflycollective.com which looks great for younger kids explaining the science of the cells and the potential treatments. Of course all our kids are different, I was initially quite worried about telling my 14yo (who this evening was in tears again over the -totally unwarranted-stress she puts on herself over schoolwork), but we had a nice factual chat this afternoon while walking, going in detail over my diagnosis, the treatment that's started and what might come in the next months and how it could affect me. No stress. Yet... and she's actually TALKING which was great. But that was probably it.

@Acinonyx2 your family sounds like mine. DH does not talk much either, luckily I have a close friend who's happy to stand in for random chats when I need to vent.

@NewlyDiagnosed
Quite a timely post as tonight DD and I were have a cuddle on my bed before her bedtime and she started to ask some questions. It was on the back of that I decided tonight to do some research, thank you for those links and resources. I'll go and have a read - sciencey stuff is a big love of hers, so some of those links especially the fruitfly page look perfect.

I'm glad your 14yr old is starting to open up a bit and you can get some dialogue going, fingers crossed it stays that way so you know how she is feeling and can help assist with it. We can't help but worry more about them as they get older can we?!

Just jumping back in regarding the COVID jabs, I was told I would be eligible for the third primary and also a flu shot but as I'm having the chemo my consultant said it would be pretty pointless as the chemo will just wipe it out, then advised me to have it at the end.
This makes sense to me, but wondered if anyone had heard anything similar?

@PaddingtonStareBare My oncology nurse said there's no evidence yet about whether chemo does fully wipe out the immunity you get from a covid jab, so they haven't been issued any guidance on the subject. She suggested I get a jab about a week before my next chemo (to minimise side effects was her thinking) and hope that some immunity lasts through the chemo. But without any evidence it may be that I would be best waiting until the chemo is all done at Christmas, as presumably I wouldn't be able to get a second booster if I've already had one. So hard to know what to do.

I have a phone appointment with my oncologist next week so I'll ask her and report back.

I am due my Covid booster from next week, had my flu jab about 10 days ago. DD2 had her flu jab on Monday and her Covid jab on Tuesday and was a dying duck for a few days, I had chemo on Tuesday so she got little sympathy.

After the reduction in dose, I am so much better this cycle. I don’t have the horrendous bone pains and have managed to be out and about (although when I walked from my house to my friend’s across the village, I did feel wobbly when I got there.)

Greetings all. I had my third dose of Covid vaccine today. I was a bit freaked out when I got there and discovered it was Pfizer as I had AZ the last two times but it doesn’t seem to hurt so far. I’ll get the booster next April apparently. This one is to make up for having the others during chemotherapy.

I had such a good weekend cycling in the New Forest. I rode 72 miles and beat the Triathlon coach round the course. NOT that it was a competition but I was so smug! I really am back to normal with my fitness and I can’t quite believe it.

@PaddingtonStareBare if you can get a PICC line go for it! One short bout of needle phobia to get it sited cuts out all the vein wrecking cannula stress. They use local anaesthetic to put it in and check its position with an X-ray afterwards so it takes about 30 minutes in all. Then you have a weekly flush to keep it open and clean. I loved mine weirdly.

It’s good to hear the teenagers are being open and discussing difficult things. I think the youngest generation have a very healthy open attitude to life’s troubles which must be a good thing.

Regards to all. New thread must be coming up soon.
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Thank you @Topofthecliff
I was in today for another round of treatment and the attempts to get the canula in later 🙄.
At least I was told my PICC line request had gone through by the end of the day! I'd been pondering between asking for a port (would have one privately if they said No) and a PICC as I didn't know chemo ruined your veins that much.

Seems naive but I didn't want to search anything after I was offered the treatment as I just wanted to go in armed with the bare essentials regarding side effects and negatives as it was all still so raw and a bit mind numbing. However I'm on the next step now with the idea knowledge (some! and only from reputable sites) is power. Rereading some of the old threads on here have helped massively too.

Well done on beating your coach!! I'm in the New Forest myself so we see a lot of the cycling events (I'm for them! 😁) - what's the secret to your energy?! I need some of it.

Hope everyone else is doing OK.
Paddington x

@TopOfTheCliff you make me feel like getting my bike out and sorted. No sign of a third covid vacc yet but I'm pretty sanguine about it.

@PaddingtonStareBare I have a port which personally I prefer - pros and cons either way. I certainly wouldn't be without one or the other. If I need a cannula (it's not a power port so e.g. for scan dyes) then I always get an appt with the vascular access people to put it in with guided ultrasound - that has taken a lot of the stress out of it. The needle thing is one of the great ongoing miseries for many conditions.

@MrsPnut glad this chemo was better - how many more to go?

Just dropping in to say hello. I had my mastectomy on Friday and am now at home recovering. I was manic (and very upset and down emotionally) in the time leading up to it trying to get everything in order. I wasn’t bothered about the surgery more in W hat they would find. I ended up staying in a couple of nights which was unexpected but am not uncomfortable now. Will be glad to get the drains out.

Now the wait for pathology. My surgeon did say that part of the axilla was lumpy. I’m trying not to think about it too much. I know they don’t routinely scan now so I do feel somewhat in limbo.

@Acinonyx2 - pleased to see your scans were clear

@MrsPnut - and your last round of chemo was better

@PaddingtonStareBare - I am very grateful for my port. It saves a lot of bruising and discomfort from cannula.

@TopOfTheCliff - am in awe of your fitness levels now. I hadn’t realised just how much a mental relief exercise is until I’ve not been able to do it to the same levels.

Hello and best wishes to everyone else. I hope you are all doing well

@Acinonyx2 one more to go, thankfully.

@JeanLannes hopefully your pathology will be kind and swift. Once the drains are out it makes a big difference.

@PaddingtonStareBare my PICC was quick and easy, my port was a slightly more difficult recovery and still here I am having chemo through a cannula in my hand!

I have put in a complaint about my extravasation and the problems that there were leading up to it. I have also spoken to a solicitor about a possible medical negligence claim (we have legal cover through our house insurance that will cover it) and will decide whether I have a claim. My basis is that every chemo nurse that I have spoken to since has been aghast that they carried on once I said the epirubicin hurt and they accessed the port 4 times before running the infusion.

I need to see what they come back with from my complaint.

@JeanLannes let us know how the pathology goes.

@MrsPnut it would take a lot to get me to make a formal complaint - but I would if I were you so good luck with that.

@JeanLannes Wishing you a swift recovery. Make sure you do any recommended exercises to keep the area mobile. Do you have follow ups to change scar dressings before you get the pathology results? I've just been fitted for my proper prosthesis: a massive and very expensive chicken fillet

I'm taking part in a study looking at cancer patients' covid antibodies. It's just a fingerprick blood test in the post. You get to see your results so I'm keen to see what mine are as it was during intense chemo when I had both vaccs. Nothing about the third yet nor flu. My GP is saying that kids 11-15yr can get the vacc if they live with an immuno-compromised family member so we'll probably get our older DS done first as no sign of it happening through school.

@Acinonyx2 I also had a bit of a delayed reaction to my Kadcyla no. 3. I had what I assume is the platelet crash the third day after with bleeding nose & gums, and was weak for 3 days. I had some aching joints but not the crippling stabbing bone pains, possibly due to stopping the Anastrazole. I didn't have steroids but may try the lowest dose next time.

Thank you all.

@HauntedDishcloth - I am doing exercises 3 times a day . My upper arm does feel swollen and numb though. My BCN said it’s normal. I haven’t put one of my post surgery bras on yet but the dressings have no leakage. I am due to see the surgeon again on Friday so assume they will be changed then. My sutures are dissolvable - I did ask in advance about glue based on the awful time @Acinonyx2 had of it. Pathology a week later. What should I expect to be told ie these are the results and this is our suggested regime moving forward?

We had a letter about the teen’s vaccine via our school from starting well a programme run by our local foundation trust. They came into school a week ago and vaccinated all who were eligible and consented. My DD’s were self isolating with me ahead of surgery so missed it. When I called they said they would be running catch up clinics. A query on the form though is whether there is someone receiving chemo - the medical team were meant to call me back but haven’t. I got a text yesterday from my cancer hospital saying my GP were aware I was eligible for my 3rd dose now.

@MrsPnut - good luck with the complaint. If it goes ahead hopefully it will put some new measures in place or reinforce the ones that should have been there.

I have given quite a lot of ‘feedback’ to my cancer centre in the past month. Definitely some improvements to be made to the communication process. It’s very hard when you start this journey as you have no idea what to expect or what a good level of service feels like other than gut experience. This thread has been invaluable though and it’s been so helpful for support and advice.

6 months since I was diagnosed and I can’t believe how much has changed.

I was going to reply @JeanLannes but realised the thread is full!

New thread #81 here: Cancer Support Thread #81

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