Cancer support thread #74 - come in, we're here for you.

[Hippiechick162]

Welcome to the new support thread for anyone who has cancer, at whatever stage of treatment, is worried about symptoms, or is waiting for tests or results.

This is the place to worry, moan, ask questions, share experiences and good and bad news, and celebrate milestones!

If you've got a loved one with cancer then your best place for support is probably on the Life-Limiting Illness board.

Our previous thread iswww.mumsnet.com/Talk/general_health/3760336-Cancer-support-thread-73-come-in-were-here-for-you

Current members, please do introduce yourselves smile

@Trumpton Glad you managed a couple of hours! I hope you get a chance to nap during the day. My nurse won't aspirate the seroma due to the risk of infection. What are the chances of the boob rubbing lady managing to "release" it? Its so uncomfortable. Still struggling to pick DD up.

I don’t really know as mine was due to a blocked drain and once that was cleared and massaged the flow started but at that point I was still losing 70ml a day .
But I had the drain out last Friday and it had obviously blocked again as it poured from the hole left after the tube was removed .
Correct me if I am wrong but I think you are 3N and had a lumpectomy, did you have sentinel node biopsy ?

If you are not too sore then from what I have read massage is very effective . Come back and tell us how it went .
I had to admit I raised my ( non-existent ) eyebrows when one consultant said to the other “ I think we should try milking it “
Nice !

And yes I will get a nap today . I am 68 and DH is 69 , DD is working from home , she is 35 and beyond the toddler stage !

@Trumpton Haha re nap situation! It was more the fact that you are able to get to sleep/nap!

I had a lumpectomy with sentinel node removal. Top right of right boob, really near armpit. My arm movement is ok, just aches a lot around the back. Titulation shall be later today so will let you know!

No napping for me. Just trying to get 1 year old DD to nap...I may be sometime.

Is anyone else on the super-sheltered list? I had colon cancer surgery end of October and started oral chemo 12 weeks ago. Was going to be 8 cycles but have paused/stopped after 4. Onc and I agree that Covid-19 has changed the risk assessment. Most benefit happens during early cycles and not a good time to become progressively weaker and end up in A&E with a fever.

Just taken my last pills. I've been reducing social contact since Jan, avoiding small children, crowds and family gatherings. Not going out at all since lock-down. I live on my own and have plenty to occupy me, but my eyes are so tired, I found myself watching TV with my eyes shut the other day. Too much short-focus activity.

I need distant horizons. I want to see for miles and miles. Haven't had the full letter yet, just the text, which says don't leave the house at all, but you can open a window. I'm hoping that I can still go into the garden. Will check with Onc, when he rings me.

I understand the infection risk. But would it really be so bad to go for a walk after dark when the streets are empty? My mobility hasn't fully returned since surgery and I'm at the age when it's use it or lose it. I could be a Midnight Rambler, reclaiming the night. Or not???

Starting to think I'm invisible on here lately.

@Thymeout I've received absolutely nothing, but I've been given Tesco and Sainsbury's priority online shopping so that's a bonus. Ima third of the way thought chemo and the nurse told me I can go out for a walk, but I won't so I, sure you will be be ok as long as you cover up mask etc.

This place went very quiet for a while @Nonotmenori I think we were all hunkered down trying to cope with the enormity of what was happening .crikey you are going through the mill with your regime !
Sending you all the very best .
I am having marmite on toast but feel very nauseous. But don’t want to take painkillers on an empty stomach .
I shop for 9 people , we have a Tesco delivery due today and I managed to get another for the 29th after trying at midnight for a few weeks !

@Trumpton Have you signed up to the government scheme and said you're vulnerable? That's how I've gotten the priority slots. You just need to give your NHS number and they'll check it and you'll get emails. But that's all I've got still no text or letters and took two weeks for emails to come. Might be worth redoing it again if you've heard nothing so you're not shopping for nine.

@Trumpton sorry meant tia de have you got anti sickness meds? Might be worth asking for some of you haven't. I swear by them x

Yes I have anti sickness meds .
I don’t think I qualify as vunerable as I finished chemo mid February .
I am not sure that we have priority slots with Tesco here as it is normal to have to book 3 weeks in advance .
DH is getting very good at shopping for us . 2 key workers . Me. 96 year old mil . 3 under 10 yr olds . Him ( 69) and DD wfh .
We are managing .

‘ But would it really be so bad to go for a walk after dark when the streets are empty? ’

Can you ask one of your doctors?

I’ve been told by one in my team and another I know personally (and who works in highly relevant field) that going out for a run very very early in the morning is not unduly risky. And is good for one’s spirit.

I haven’t quite dared yet, but if increase in numbers really is lowering, then I might do it next week

Trumpton On the Govt website, but not sure if it applies to you on your island, it says chemo within the last 3 months.

Nonot I applied on the Govt website, then got a text saying I wasn't on the NHS list and they would be consulting my GP. Then a text, again from the Govt, saying that I did qualify and would be receiving a letter. But no sign of it yet.

IVampire - I'll ask him next week. Blood cancers seem to be right up there with transplants, so if your doctor says it's OK...

No priority slots on the island .
But I have an order for 29th .
It’s interesting shopping for 9 with a limit of 80 items anyway .

@Trumpton Sainsbury's have removed limits I think it's only Tesco that has the eighty limit.

ThymeOut

All blood cancers are In the shield group because you can never rely completely on a cancerous immune system.

But not all blood cancers are the same, and for some - like mine - the aim is not to cure but to suppress so effectively it is akin to a functional remission. You know people sometimes talk about future cancer treatments knocking cancer back to a manageable chronic condition? Well that’s the model I’m living already.

So on some levels, I’m ‘normal’ - my blood tests have been normal since I started on treatment. But that’s only because of the advanced cancer drugs (a type of inhibitor which counts as chemo and which is on the shield list). Consultant is less worried about patients with my kind of leukaemia than others types

I’ve still been too nervous to go out (furthest I’ve been since formal shield began is onto the pavement outside my house for one of the Claps) but might treat myself if I wake early tomorrow or the day after

It's been ages since I caught up properly here, lots going on, I see.
Glad to see some good news from @peaceanddove, @Zorgothslugofdoom, @daisypond, @barberousbarbara and @citybumpkin.
@Trumpton, so sorry about your latest UTI, I hope you feel better today.
@Babysharkdoodoodood, that's a long wait for the biopsy, so tough! Maybe if the coronavirus hooha subsides, it can be brought forward?
@Squiffy01 have you got an actual date for surgery yet?
@Nonotmenori that was a rough day for you with double chemo and drugs. How are you feeling now? The breathing difficulty must have been very frightening, too.
Welcome and commiserations to newbies (well, new to me, anyway) -
@concernedgirly how are you doing? Have you had any more appointments since the diagnosis?
@Chesneyhawkes1 have you had results from the PET scan?
@InOtterNews I've had to do a lot of self-injecting, I think you'll find you get used to it very quickly. It's just a quick stab with a very thin needle, quite easy. Sorry you had that reaction to meds.
@Thymeout the NHS seems to think I should be super sheltered, have had texts and two letters, but actually I don't qualify (thank goodness). Trying to tell them this, though, has proved impossible so far! Would I go out if I did have a reason to be on the list? Probably not - although I can imagine it would be awful to stay indoors that long. Do you have a garden?
Good wishes to everyone here

@Bloodybridget I have. My lymph nodes are clear. As are lungs, kidneys etc etc. Which is great. It's spread a little downwards though. I'm off Thursday for one more scan and to get some little dots tattooed on me.

Then I'll be starting radiotherapy 5 times a week for 5 weeks. And chemo too on one of those days.

After that I'll be having internal radiation they said.

@Nonotmenori yes filgrastim I also start them tonight for 10 days.

Today is my last day of steroids for a little bit - which whilst I'm a bit worried about falling off the cliff edge after 2 or so weeks of a high dose I am potentially looking forward to sleeping again. I don't think I've has more than 4 hours a night since (and not even in one hit) even with sleeping pills.

Fatigue is now really setting in, but thankfully the nausea/motion sickness which I've had since my chemo was given has gone.

@Thymeout I am now on the list. My diagnosis came on the same day as lockdown so the system is behind for me. I filled out the form of the Gov website and then had phone call with my GP. I got a text immediately. A letter within 48 hours. The local Council now have me on their list and have put a volunteer in touch to help with food shopping. I still can't get an online delivery so not sure when the supermarkets will catch up.

My consultant basically told me I'm pretty much isolated until the end of chemo and then again when I go for transplant - so I might be able to get out of the house in-between stuff - I estimate this to be the end of July. Once I start transplant treatment I'm looking at around 16 weeks isolation again - but that feels like a while away so I'm just focussing on one week at a time

Just checking in.
@Trumpton I do hope you get a better night.

I'm on the shielding list though I think due to immunosuppressive drugs for RA and lung disease rather than cancer. Although Herceptin is an antibody drug so maybe that as well.
@Thymeout if you have online accounts already with the supermarkets they seem to have acted quickly once they got the list. Iceland in particular worth a look. I've always shopped online so had accounts with them all. Ocado and sainsbury's haven't been in touch but asda, tesc, Morrison and Iceland have.

As to going out. I feel it's possible those on the shielded list will be expected to stay home for as long as it takes to get a vaccine and so I am breaking the rules by going for a walk.
I am lucky to have a garden and live in a village. Not particularly scenic but I can go for a walk down a farm track or country lane and see no-one. On the odd occasion I have seen someone approaching I turn round and go home.

@Nonotmenori you poor love, you have been put through the mill. I hope they sent you home armed with lots of drugs. I had terrible facial rashes on chemo and was given Pliazon cream which is only available for chemo patients, it helped a bit as did chlorphenamine.

@Nonotmenori I had wigs but found I preferred hats, had lots of different colours and styles.

Thanks to all those who replied to my query.

@Skap. I live in a London suburb, but one with a high number of confirmed cases. Before I got the text, I walked 50 yds to post a birthday card. Middle of the afternoon, not a soul in sight, no traffic, even on an A road. All the shops in my little local parade have shut. It was like a sci-fi film.

I'll ask my oncologist. I'm OK for shopping atm as 2 of my grown-up dcs can do drive-bys. V helpful neighbours who are keeping me well supplied with my current craving - Haribo Tangfastics. An extremely essential need.

I'm sure I'd feel differently about risk-taking if I were my dd's age with a young family. As it is, going out for a walk seems less risky than taking a carrier bag of shopping into my house. I just leave it to self-isolate overnight and then do a lot of hand-washing.

Can I add to this week's good news?
I received a letter yesterday following my MIR on 13th March. It did not show any evidence of residual mass, and indicates a total radiological response to the treatment. No further action necessary, other than check ups every three months.
For now at least, it's gone.
I'll keep checking in here. All the best wishes I can possibly send to everyone going through it.
@Chesneyhawkes1, I had the same treatment as yours. Please PM me if you'd like to x

@Bloodybridget No not heard anything since diagnosis, I don't think the surgeon was too concerned its a slow growing cancer even when in the lymph nodes. I was told if you are going to choose a cancer this is the one to have its the "good" cancer. I never knew any cancer was good!

@concernedgirly

This is thyroid cancer? I didn't post at the time, because, as you say, cancer is cancer and it's still a dreadful shock to be told you've got it. Someone saying, 'It's no big deal' implies you're over-reacting.

But that's exactly what a friend of mine said when he told me his wife, an oncologist at a top NYC cancer hospital, had been diagnosed.

When I had my colon surgery, the operation had to be extended to over 5 hours because someone spotted a nodule where the colon joined on to something else. They couldn't just leave it. The path results showed it was cancer, but a different cancer, with a mitotic score of 1/10. When I asked about it at my last check-up - 'so it's nothing to worry about?' - my surgeon said, 'Nah - just think of it as a Buy One, Get One Free. I'll throw it in for nothing.'

@InOtterNews How are you getting on with them? I've suffered the last 24 hours since injecting. Feel like I've been beaten up and stuffed into a car boot left to rot! This is the worst I've felt since starting this journey. I really hope you're not getting it as bad as me. Only 6 more days of these jabs to go 😡

How is everything doing on this strange Easter Sunday?

I braved the shave last night. It's so weird and feels weird and I hate it, but had to be done.

Hope everyone is doing well and love to you all. Xx