Cancer Support Thread #81 Newbies welcome

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This is a kind and friendly place for those with cancer or those worried they have cancer (or who used to have cancer) to hang out.
Please introduce yourselves and chat away. No issues are too big or small here.
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@Thymeout I can’t see it on the thread any more but think it was you who said you’re an accountant and struggling to concentrate? Get signed off. I’m a few weeks ahead of you in the process and I wish I’d done it earlier. HR department said ‘yes we were expecting this - surprised you didn’t do it earlier’ and the doctor said ‘oh you’re working? Let’s change that’, but no one actually instigated it until I did.

And chemo veterans… can you tell me what’s normal for side effects?
I’ve had cycle 1 of a 6 cycle R-CHOP (3 weekly cycles) treatment. I’m trying to plan for support and work out when I’m most likely to need the most help as with a 6 and 7 year old I can’t do this alone but I’m also trying to balance the risk of Covid and not sure if I should keep them off school in January given how rife it is. I have lymphoma so have been told to avoid catching Covid if at all possible. Family isn’t close so I can get them around for a month to help and I’m trying to time when is best.

Will I generally get weaker with each cycle of treatment so need the most help later on? Or will the biggest effect be where in the 3 weeks I am with the worst effects during week 1 and slowly getting better with the week before the next treatment having me at my best? Or will it just vary too much to say? I have info from the hospital telling me possible side effects but it’s a bit contradictory and general. Also I feel worse now than 2 days ago so I’m not sure if Its just too variable to plan at all! Thanks.

@Dammitthisisshit generally, if the day of chemo is day 1, effects set in from day 3. The prednisone also pushes back the side effects for a day or two. I found the worst was days 3-7 then subsided to week 3. You might not feel much affect at all for the first couple of days.

But over time, each cycle got worse and the length of time to get back to normal was longer.

Side effects vary a lot between patients both in severity and which ones hit hardest. Your regime is quite a heavy one I'm afraid, so definitely plan to have help when needed.

I would echo what @acinonyx said. If you're taking steroids they definitely mask the side effects so expect to start feeling unwell when you aren't taking them.

In my 3 week cycles I found I felt the side effects for about a week (10 days in the case of my first docetaxel until my dose was reduced) and then gradually returned to normal. The biggest lifestyle impact was not feeling like I could drive for a week.

I've definitely become more tired with each cycle and stopped work fully after cycle 5.

In my first chemo session

You go get'm @MrsWooster

[quote Dammitthisisshit]@Thymeout I can’t see it on the thread any more but think it was you who said you’re an accountant and struggling to concentrate? Get signed off. I’m a few weeks ahead of you in the process and I wish I’d done it earlier. HR department said ‘yes we were expecting this - surprised you didn’t do it earlier’ and the doctor said ‘oh you’re working? Let’s change that’, but no one actually instigated it until I did.[/quote]
@Dammitthisisshit it was me who's the accountant that can't concentrate lol 😂
I was dreading work yesterday but actually found it a welcome distraction. I'm going to speak to my GP because the recent letter the consultant sent her doesn't really give the full scary picture.

Phone call this morning…chemo starts on Wed (assuming bloods ok on Tuesday).

Good luck Podge. Mine was fine today; the woman next to me had an allergic reaction and it was unpleasant and scary for 15 minutes then she was absolutely fine, reading her book and finishing her course. Not a bad worst-case-scenario…

@MissSmiley oops sorry! Good you are talking to the GP - I suspect GPs are far more astute at decoding the tone of letters than we realise. Good luck with work. I found my HR contact really good and worth talking to early on though I haven’t really decided what I want/need at the moment. I’ve never had a sick note before, ever so was(am) a bit clueless! Cancer is classed as a disability so they have to make reasonable adjustments if confirmed. Fingers crossed that the reality for you isn’t as scary as your fears - this waiting /testing bit is tough.

Thanks @SewingBees and @Acinonyx2 that helps. Also I had a chat to my care coordinator (nurse) yesterday and she has confirmed a few bits. It’s damn Covid that’s confusing the issue as I can’t isolate with the DC in primary school, and it was rife there pre Christmas and likely to be worse initially once they go back!

anyone know anythin g about attendance allowance ? Hospice recommended me for this two years ago when diagnosed with inoperable OC. it was granted, as I live alone with no one to help. Since then I have had a debulking op and chemo but actually manage to do everything myself now except for if Im having chemo.
when I use a dog walker. Should I notify the works & Pension bods or whoever, or just leave things as they are as probably in the future I will need it. same with the Blue Badge

Hi, I'm joining but hopefully not for long (no offence 😬 )

I found a little lump on the underside of my right breast at the end of November (actually, this was the first time I've checked my breasts in probably a year, so it may have been there a while). I've not done anything about it as, from the outside, it looks kind of like an acne type spot (raised, smooth, slightly red). It doesn't hurt at all, and hasn't grown or changed in that time. Kind of feels like a pea under the skin. As it's been there for too long to be a spot I'm thinking I should ask to see the gp.

Happy New Year all, I hope this year brings healthy outcomes for us all.

@JaneyJimplin Welcome and we hope your visit is short too.

I have an appointment with my oncologist on Tuesday privately despite me telling them I am using the NHS for my radiotherapy. I have also been sent an appointment for a phone consultation with a different oncologist for a few weeks time which I think is a mistake. I’m sure my oncologist will change it next week.

Happy new year all. Sorry I haven’t posted or joined in for a long time but I felt I had to ‘back away’ from the thread as it was all too close to home and was triggering awful anxiety for me.

Quick update from me for anyone who is interested, just had my seventh chemo session last Thursday, got 12 weeks of this type and then going onto EC (one session every 3 weeks until mid April). Looking at surgery mid-May ish, as long as I can avoid covid between now and then, which could set me back a week or two. My oncologist advises that based on her physical examinations, she says the tumour is shrinking, so is hopeful I’ll get away with a lumpectomy rather than full mastectomy. Doing ok mostly, very tired but can’t sleep (thanks steroids!) quite achey joints, nosebleeds most days (just generally pissed if I have cancer mostly!) but luckily my anti sickness meds are working ok. Terrible chemo brain fog! But on the whole…alright. Just about. Just taking it one day/hour/minute at a time.

Sending you all lots of love, un-Mumsnetty hugs, and most of all, all the positive vibes I can muster to each and every one of you xxx

Popping in to say happy New Year to everyone here, those I know and the many I don't. Whatever stage you're at, I send very best wishes, and hopes for some good times in 2022.

@thereisonlyoneofme I can't help with your query about attendance allowance, but in the past I've emailed HMRC or whatever it's called now, with a non-urgent question, and I did get a reply after a bit. Might you be able to do that with DWP? I'm glad to see you're managing ok at home.

Quick update from me: I'm onto 4-weekly SafeFit sessions which will finish in March. Fitness and energy hugely improved, which is fantastic. Doing very well on niraparib; bloods and oncology appointments now going 8-weekly. Scan due this month, am optimistic.

Brilliant to hear from you Bridget and I'm really glad to hear that you are feeling optimistic. I'm in the wait and see lounge and equally optimistic.
My nursing registration ran out on the 31st December(happy New year from the NMC!) and I actually don't feel sad about it which has confirmed in my mind that my decision to leave nursing was the right one. I'm hoping to volunteer for Home Start in the New year to put my experience in perinatal Mental Health to use, and to stop me obsessing about cancer if I'm honest!I
@Thereisonlyoneofme I'm no expert I don't get attendance allowance but I do get ESA and I was put onto a support group meaning that there is no expectation on me to actively seek work. The DWP review this ( I had a phone appt at the start of December) so they could tick their boxes and the benefits could keep being paid. So maybe attendance allowance will be similar.
Happy New year to one and all xxx

@Runningwithoutstopping I also claim ESA and am in the support group. I've been told I need a review this August whereas I'd presumed that as I have incurable OC it would just carry on. I know you're a few months ahead of me so I'm wondering if you've had your review and the format it took.

Hi Fizzy yes I have had the review. They contacted me by letter to arrange a telephone appt which took the form of someone asking me if I agreed that I would inform them if my circumstances changed and that was that.
Being in the support group means there is no expectation I will look for work, although I was told that if I changed my mind I could contact them!

4th day into chemo 1 is a bit shit…. Started yesterday, with joint pain, nausea and fatigue and it’s pretty bad. I’m guessing this is par for the course-any reassurances around that it gets a lot better soon..?

I am also waiting for the hair loss, as I lasted well under 5 minutes with the cool cap - they weren’t kidding that it is hardcore.

Hi @MrsWooster I found it did start to get better (I had carbo\pacitaxel) week 1 was by far the worse. My oncologist said 2 weeks for hair loss and he was exactly right. You were very brave to try cold capping I wasn't brave enough to even consider it. X

@MrsWooster it may get worse for a day or two but you should feel a shift around day 6-8. Hair loss usually starts not later than day 17. I didn't try cold capping either - I didn't think hair loss was the worst thing.

Thanks, you two. Day 5 tomorrow so I’ll cross fingers for Weds onwards.

Hi @MrsWooster, I’m so sorry you feel rough, hope it gets better for you soon.

@MrsWooster thinking of you today

I called up to find out when my CT scan might be, the surgeon wanted it by the next Sarcoma MDT which is this week I think, after the lady originally said it might be 6-8 weeks she put me on hold while she read my notes and came back to say can I come in at 6.30pm today!

A friend is taking me because the parking at this particular site is a nightmare. I'm hoping I might know within a couple of days how much it's grown and whether I can have surgery asap