Cancer Support Thread 83 - Here comes the sun (hopefully)

[Silkierabbit]

Welcome to a supportive thread for anyone with cancer to discuss how things are going, ask for advice etc or discuss life in general.

Please feel free to join if you are going through tests as well, hopefully they will come back all clear but if not we are here to hold your hand through the journey.

Named the thread in honour of the lovely LeslieKnope who did thread 62 in the same title who is sadly no longer with us but inspired me with how she was so lovely and kind with stage 4 cancer in her 20s and also the lovely PurpleUnicorns. Thinking of you both. Hopefully there will be some sun inbetween the difficult days.

May be useful to do introductions at start of thread. I am 49, lobular breast cancer, diagnosed Nov 21, after sent for tests then after being dismissed as nothing by GP in June. 46mm and 17mm tumours with 1 lymph node involved. Had 2 surgeries, currently doing chemotherapy, radio next then hormone tablets. 1 husband and 2 kids 16 doing gcses and 15 with SN and mute. 1 Maine Coone kitten, 3 silkie chickens and 1 indoor rabbit.

@Chicagocubs Thanks Kathy for letting us know - you & your family have been in my thoughts. I hope all the practicalities go as smoothly as they can. Give your nephew a hug from me please - a random internet woman! And one for you too, take care.

I'm so sorry to hear @Chicagocubs has sadly passed away. Much love from the HC household. 💕x

RIP @Chicagocubs , such sad news.

Thinking of Kathy & her son & family at this difficult time.

Hi everyone.
I’m 46 and was diagnosed on Monday with stage 3 breast cancer. My dr has recommended 7 chemos and a fucking possible double mastectomy and a hysterectomy. They’ve found fybroids also.
I’ve found the worse bit is telling people. I had my full body MRI on Wednesday but they’ve had to reschedule it because I told my daughters and some other members on Tuesday and I just wasn’t fit for purpose. My dh had to leave the room half way through my diagnoses. It’s all been so emotive.
I’ve read some info on here today about work - I have a meeting with my boss this morning. I was going to request a lower caseload (I’m a social worker). But I’m clearly not getting it am I? I can’t do home visits anymore can I?
I have the mri rescheduled for Wednesday - and I’m terrified of it. I’m scared of the actual process and I’m scared that they’ll find more.
I’ve been experiencing so many problems and put it down to menopause and all along it was bloody cancer.
thanks everyone for sharing your info - I’m so glad I’ve stumbled across this thread I’ve already benefited greatly . ♥️Lots of love to you all

So sorry - lots of love to Kathy’s family and loved ones ♥️

@10isenough i can’t advise re the HRT, did the sonographer say what she thought the lump was? Sorry you’re having a stressful time.

@Upyouranty Welcome to the thread, sorry to see you join. Being diagnosed is so emotional, on so many levels and with so many things to worry about! It’s no surprise you and your family are struggling. I highly recommend calling or live chatting MacMillan. My husband had some great support from them when he was struggling.

Work is very tough. Do you have sick pay/critical illness insurance you can use? If not, again MacMillan can offer financial advice. My work have been great, I’m currently off after a debulking surgery and waiting to hear if I need chemo which will extend my time off into the unpaid area. A cancer diagnosis does give you protection under the disability act though.

Good luck with your MRI, it’s awful waiting to know what they find, but once you know you’ll get a treatment plan and it’s step one on the road to being NED. Much love. X

Welcome 10 and Up

Up So sorry you have been diagnosed with breast cancer. I also have breast cancer and sending love and hugs to you. Its so much to take in but there are quite a few of us with breast cancer on here and we will help you through the journey. MRI if you can get a wide scanner is easier than the narrow ones.

10 I have hormone driven breast cancer and no HRT is allowed as it fuels it (never taken any) but up to you and your doctors really whether you take it whilst you wait. Hopefully will come back benign.

Thank you @Silkierabbit and @AGreatUsername

i was thinking in my meeting today with my boss that I should ask for less work but after reading info I’m not sure now.
Some posters say prioritise your health - I’m motivated by worry that my boss will be cross if I’m honest. It’s not financial , it’s pressure of letting people down.
I think I’m being naive about the impact of chemo and I thought I could just have a few days off here and their but I don’t think that’s going to happen is it?

With chemo you are especially vulnerable right? So do I have to self isolate ? Does my family? We’ve already cancelled a holiday we had booked for September and we just pulled out of our dream house purchase which we were due to exchange on next week.
As you are going through chemo do you have to put your life - your work and everything on hold?

I know these questions sound silly but I’m just so overwhelmed with it all tbh.
I mean do other people work and have lives when they have cancer treatment?

I think how someone reacts to chemo depends very much on the individual. Some people manage to work part time through it, some are really poorly. If you don’t HAVE to keep working I wouldn’t personally. I am very much on the prioritise your health side. Sod your boss. You can’t help this, it’s a bloody dreadful thing to have and live with and try and treat, you are absolutely your first priority not work. Be kind to yourself.

Thank you @AGreatUsername
i think I’m going to have to keep reading and learning. Thank you so much for taking time to reply 🙏
And to everyone on these threads who make it a little bit easier on others x

Up I would strongly recommend you prioritise your health over everything esp if they are saying stage 3. Put yourself above everything, I know its difficult esp when you are a Mum but this was advice I was given and with cancer its important to treat it promptly and thoroughly. Personally I would not work through chemo if that is an option and do not feel guilty at all for that. I did not have to isolate through chemo, that I think has gone now, its just a lateral flow test pre each chemo you do at home and they ask you at my hospital. But it is wise to be very cautious with covid, I did largely isolate but did have a couple of weekends away, one to see puffins in Wales, one to see puffins in Northumberland, that sort of thing is possible just be careful and I always take gel as well. Its also worth getting on the anti-virals list if you can. I was only put on it at the end of chemo but if you can get on before its an added protection if you get covid. If you need a booster wise to get it pre chemo, I did that. Also dental checks get them done pre chemo, probably need to go private to get done but that was well worth it and dentist gave me very high fluoride toothpaste and did all dental work needed before as it is tough on teeth. So many fun appointments.

It varies person to person and chemo to chemo how you are. I choose to go on 12 weekly Pax rather than dox or EC as the side effects are more stable so you don't get the very bad, meh, ok pattern of the 3 weeklies but meh meh meh. Discuss with oncologist but I think they may well not been keen on you doing home visits, some people do work through part of it though personally I was very glad not to have to. I was so tired though also dealing with a DD doing GCSEs and a SN child who school suddenly said no school for. Sickness there are loads of tablets for, and that is not that big an issue but it did take a couple of weeks to get the right balance of meds. Hair loss you may be able to cold cap if that concerns you. I was not allowed to cold cap so did my own equivalent of a bag of frozen peas on my head under a close fitting chemo hat from Amazon and kept around half my shortened to bob length hair. I also got one off monthly cleans during chemo, if you have the money would really recommend that.

Re holidays I was told UK is fine. The other issue is insurance it can be very difficult in active treatment. A house purchase it could still be possible though if moving areas could mean moving hospitals and I would only do it if everything can be contracted out to others. For me I can do things on the computer everyday, sometimes the steroids with chemo make me very anxious / depressed / ranty so on those days my messages are quite loopy at times but I could probably have done a lot of the paperwork for a house move but not the physical packing so much, that would have been better contracted out. But the thing you also need to consider is stress levels, cancer / chemo is already taking stress levels very high and you need to minimise other stress things if possible. Everyone is different though.

Though having cancer may also change where you would like to live longer term as well. Like I would now sadly include a good hospital in my list of requirements. And your priorities and capabilities change.

@Silkierabbit your post is so incredibly helpful thank you.

what is a once monthly clean?

Its just we have had a cleaner in for 3 one-off cleans once a month, its just a nice thing to have if you have enough money to do that esp with kids. Its definitely not essential just something that can help a bit. Generally anything that makes life easier during chemo is worth doing like easy meals etc.

For post surgery its worth getting in soft cushions etc, some painkillers like paracetomol, ibuprofen. There's a charity called Little Lifts which can send you a gift pack for chemo, my daughter took mine but nice to have. And there's a lovely charity called SomethingToLookForwardTo which gives gifts like meals out, hotel nights for people with cancer esp those with young families, later stage, income effected. They have given our family a lovely week in Cornwall by the sea for next week. Macmillan are worth getting in touch with for counselling, they can give 6 sessions via BUPA. If you would like NHS counselling its worth starting to apply for that way before you need it. Some people also go on meds to help with depression / anxiety. I have not as did not want anymore meds but it is a very tough journey emotionally. I would say taking things one stage at a time helps, like first stage so if surgery first forget about chemo, its too much for your brain to cope with. Just focus on getting through that day. Exercise helps a little if you feel up to that, 20 mins a day if possible helps something in the brain, can just be walking or lying in bed doing some basic moves.

lol @Silkierabbit i thought it was a one off clean through for a body 😂

thank you again -

I am back home and my surgery went well, very well actually, I only needed one lymph node removed and my wide local excision was able to be closed without needing a graft or flap, which I wasn’t expecting.

I got home from hospital and slept about 12 hours, DH woke me up with a fish finger sandwich which was awesome.

Lots of pain though, especially where the node was removed, if anyone has any tips for things that ease it, I’d be grateful.

Mentally I’m doing a lot better, not having to have a flap / graft has given me a nice boost, as has the surgeon saying there was no visible disease in the skin / node they removed and that the node looked healthy.

Still a couple of weeks wait for the full pathology, but I am feeling much more positive and hopeful, and as no graft I can have a shower tomorrow!

@Silkierabbit that info has helped me too, thank you.

Mine is bowel cancer. I was told I can't work when chemo starts as I teach young children. I actually went on the sick 3 weeks ago as I was not coping well in the classroom, my concentration was shot. I had changed to mornings only, but was still so tired. My Head was just borrowing TAs here & there for the afternoons, no consistency for my class plus taking the TAs away from where they were meant to be. I decided it was better for me & my class to finish on 10th.

But 3 weeks on I haven't started treatment, & I know now I will be off more than 6 months, so I'll be down to half pay.. I'm extremely fortunate that I get 6 months full, then 6 months half pay, but my salary pays the mortgage! We just got married 2 days ago, so my husband no longer gets his widows pension. That was a huge chunk to lose. (He lost his last wife to cancer 10 years ago.)

I go into hospital next week to have a stent inserted into my bowel. The oncologist, who I still haven't seen, wants more info so they will do another biopsy then. They obviously need the results of that before they can sort chemo. It feels ages to have been off with nothing happening.

Im really hoping chemo allows me to feel OK enough to get the kids on some days out through the summer..

Confused glad surgery went well. I had lymph nodes removed, first time only hurt a little bit then full node clearance was more painful and but it did ease and going within about a week. In that time would take as strong painkillers as you need. If you have not been given any maybe ask GP for some. I got given none first time and paracetamol was enough, second time went private on NHS and got given loads including some very powerful orange ones, not sure of their name but had 5 types of painkiller and those really helped. Other than that doing the exercises you have been set helps a bit at getting normal use back. Otherwise rest.

Help It does seem to take forever before starting, I did a complaint to get mine brought forward in the end but hopefully things will be happening soon. In the end it was a month of tests then first surgery then 4 weeks then second surgery then 6 week wait for chemo. There are a lot of meetings, tests and just delays at times. Macmillan can advise on finances but I have a feeling you maybe able to get ESA as well as working, I have not been working so not an expert but have a feeling it can top up the half pay. Your HR department may know or Macmillan, ESA for me took a while to come through and not sure when optimal time to claim is if working but eventually you get in support group and if not working its about £115 a week. Hopefully that is possible and can make up some of the difference. Another thing is you can apply to cancer charities for various things.

You should absolutely be able to take the kids out in the summer even during chemo. You may well have to adjust it like mountain climbing would probably be out but things like sitting on a beach, boat trip, shorter walks should be possible. If you are on a 3 weekly chemo, its the final of the 3 weeks each time which is normally best. It is best to normally stay not too far from a hospital but can be anyone, and tbh on my weekly one I did not need it, just take temp everyday and be careful with covid, on 3 weeklies there is most risk week 1 and think it maybe something like 10%. But a lot can be avoided with taking temp twice a day and immediately calling chemo line which is 24/7 if over 38C or feel ill. When people get very ill its often they said as they leave it too late, often people feel rough at 2am, don't want to bother people and wait then they have problems whereas calling straightaway they can either reassure you, call you in for assessment and say start meds and its a minor thing and you go back home. If in any doubt call the chemo line is the rule. I would say outdoors is better for covid risk but yes I have been away twice during chemo and on a boat trip, walk round an island, to three B&Bs, to a castle etc. They told me swimming is also possible but no hot tubs and saunas and be super careful in changing rooms though ask advice yourself as opinions vary. Though not that sure could have swam on it, could before and after though, will swim next week in Cornwall.

You can sometimes also take a break in chemo for a holiday. Ask first but it might just be possible and sometimes they give you breaks if side effects need to calm down. I am last week of chemo and next week I have planned going to Cornwall, DH driving, staying overnight in place with private pool and I will swim, Minack theatre performance, boat trip, surfing lesson, hiring classic car for a day, visiting St Michael's Mount and I do think I will manage all those things. Though I do always have my husband with me so if I did get ill he could take me home but am not the bravest person. Something like swimming would say you have to be slightly careful incase you suddenly felt unwell but its just thinking it through a bit but days out really help.

@Upyouranty You may want to wait to tell anyone until you have full details of timings and what is going on. I told people at work too early when I was assumed to have Stage III - scans showed I was IV and I didn't have to have chemo or surgery and was put on a pill regimen. That got confusing for people planning and while they probably didn't think I was a liar, it was extremely awkward because I was in the office during and after diagnosis with a head of hair and on crutches due to a 'back injury'.

When you know more about type of breast cancer and treatment regiment you will be able to have a much more productive conversation with your line manager about when you are likely to need more support/time off and when less.

Welcome @10isenough and sorry you find yourself here. This was me approximately 18 months ago. I found once I had a treatment plan I could move forward.

Welcome too @Upyouranty pull up a chair both of you. I couldn't work as I work with children and with a weakened immune system it wasn't safe.

HC x

@Silkierabbit thank you again for all that advice. It's quite stressful when you have no idea what to expect, obviously we are all different, but knowing other people manage to do all those things makes me more determined that I will too.

I watched The Last Dance last night & seeing how much energy Dame Deborah had puts me to shame. I am 54 & obese & don't have that energy now. I don't necessarily want to dance round with my chemo drip, I'm quite a shy person, but I do want to enjoy the summer hols with my DD & DSS. DH will be at work a lot but I'll plan some day trips with my adult children & grandkids.

I hope you have a wonderful time in Cornwall @Silkierabbit . It sounds amazing.

I always seem to be very very tired. Did anyone else have that before chemo even started?

Can anyone answer a Covid jab query? Ive had 4, the last one end of February.
Ive had an email from NHS saying book for your Spring booster, because of CEV
or over 75. Spoken after a huge wait on phone to someone on 119 to ask if this is No.5 or if its 4 and they havent updated my record. Told to speak to my GP surgery to see if last one was spring booster. They dont know as that isnt mentioned on my record! So, have any of you ladies been offered a fifth jab ?