Cancer Support Thread 94 - Sweetness and light - the two noblest of things.

[LemonDrizzle10]

@tilllly and Daisy.

@Enigma52 When retiring early because of ill health, doesn't the person get their pension without losing out - or is that only certain pensions? As a TA, is it the Teachers Pensions? I just find it awful that metastatic cancer doesn't qualify you for early retirement on health grounds and getting the pension you would otherwise have got had you not the diagnosis you have. Do the TP know your diagnosis?

I agree, the NHS doesn't like patients speaking out. AFAIK it doesn't like whistleblowing staff either. Such an antiquated messy set up with a lot of money wasted too; such a pity, it could be great.

@MothralovesGojira It's outrageous the hospital told your GP you were being a problem.

While on chemo and MABs, I reported an error to the unit by email in how the nurse administered them to me (I read the instructions online on the company website that makes the MABs, emailed the company to check and they confirmed it). My oncologist asked me a while later if the chemo unit pharmacist had replied to apologise and explain that it had been corrected. No, he didn't reply; in fact, he was extremely rude to me every time he saw me in the chemo unit after that, deliberately blanking me or outright rude. But I did notice that they had corrected the way they did it (order of chemo / MABs and how they injected the MABs). It's pretty low isn't it, to blank a chemo patient for pointing out an error in how their medications had been administered. I'd actually been so polite about it and not informed PALS, so I could have made his life much more difficult.

We are expected to sit there, accept all the toxic medications week in week out, over many months even years (including when incorrectly administered), and shut up. Be a good patient and unquestioningly praise the NHS! So depressing really.

Have to say the chemo nurses were totally lovely though.

@SummerCycling

I agree with you about chemo nurses - every one of them was lovely in the main.
I only found out about the consultant's comments to the GP because the surgery included the letter when I asked for paper copies of all my test results and the oncology letters from BC1. So I think that the letter wasn't for my eyes at all and was basically a whinge at how uncooperative I was being. GP said to me when I brought it up that I was fully in control of my treatment and could decide for myself if I wanted treatment or not and that sometimes consultants lose sight of the fact that we are people. She also said well done for getting myself informed and standing up for myself because not many patients do. We did have a good natured laugh about the consultant tattle tale-ing on me hoping that a GP could make me see sense!

I'm still waiting for a phone call to rebook my consultant appointment.

Well that’s me home. Pee bags on each hip and a stoma in the middle. Utterly fed up of it all. Now we await to see what clinical trials they will consider me for! As for pensions, after speaking to GP and Oncology to check they would support me in early retirement pension claim which they both said they would, had initially applied for my lgps (frozen) on the grounds of ill health - this was when I thought treatment might work but I didn’t want to return so was hedging my bets. It’s on hold as it’s quite obvious that I’m not going to get better. Insurance is paying half pay and employer is still contributing to pension plus I’m accumulating paid holiday leave so have left as is. Basically hanging on for death in service money for DH. Depends on what happens with trials really. The joys!

Sorry to hear about that Whatever sounds pretty grim.

I think Macmillan can help with financial advice on what benefits you can get, might be able to help on pensions. I've not used them but I think with cancer you can qualify even with savings for contribution based ESA if made NI contributions before and sometimes PIP. I got ESA. Would have thought with stage 4 cancer causing significant symptoms you should get both though can be slow but they do backdate. I think going via Macmillan seems to speed it up.

I am shocked you can't take pension early for stage 4. I know I have private ones and those I can take at 55 (shortly to rise to 57) and gets passed to nominated people if don't use and cash purchase, the state one I likely won't see a penny of and nothing gets passed on. I also have a civil service type one which is defined benefit and that I've been told aged 60 but at least passes on if I don't make 60. I think you can take it earlier in some circumstances maybe with a year or less to live but its worth contacting everyone for the exact rules. I am lucky to have savings though had just stopped at a job with all inclusive private medical insurance shortly before being diagnosed. Basic rules are here https://www.gov.uk/early-retirement-pension/personal-and-workplace-pensions Also can get signed off sick.

My cat is 8kgs but denies being chonky, just a lot of fluff and trilling. 😂With mastectomy I had one side removed was told they would reconstruct in a year, that was 2021 and I am still waiting, silly me for not asking which year. Hopefully will be this year but with all the doctors strikes looking less likely. But at least I got to take my holiday to Borneo with DD this year which was originally due for 2020 then got postponed with covid x 2 years, cancer x 1 year and DS in hospital one year though we did go elsewhere.

DD off on holiday again tomorrow looks like Floof wants her to take him.

I don’t know I’ve been so optimistic throughout and my oncologist is great and doesn’t seem overly concerned but I’m looking in the mirror and I don’t look the same anymore. I’m having diarrhoea a lot during this chemo and I feel I’m losing weight which is scaring me. I’m eating and drinking fine. How many immodium is allowed I wonder? I’m just taking one which is helping. Also my upper abdo seems distended does anyone get this? I’m on folfox, my leg swelling is much better and getting the stocking on is easier. I dunno I just feel like it’s progressing although I have no proof really.

@Whatevershallidowithmylife I had help with my PIP application from a social worker at my hospital when I was in-patient. Because I am stage 4 with a fairly imminent terminal diagnosis it was all kind of waved through by the PIP people. I expect Macmillan could help you. Also, I know this probably sounds scary, because it scared me too, but I'd really recommend asking your GP to refer you to your local hospice. They are not just about end of life stuff but about enabling you to live your life well and they provide loads of advice and help on all sorts of things.

With regard to immodium. My chemo pharmacist said you are supposed to take 2 tablets with the first episode and then you can take 1 each time you have another loose motion with a maximum of 8 tablets in 24 hours.

Thank you so much to everyone who welcomed me to the thread - @SummerCycling, @catmomof3 ,@MothralovesGojira, @TwigTheWonderKid.

I do actually have a plan now. It feels great. It is the opposite way round to what I had been expecting, and they will do the surgery first - next week! I have one tumour which is +++ and two smaller areas elsewhere in the breast. The second biopsy on one of those areas showed that it was also pre-cancerous so they want to take the whole lot out, which is a lot of breast. Thankfully I do not need a third biopsy and more waiting - I am booked in for a single mastectomy next Thursday!

I was really struggling with thinking about the cancer being aggressive and reconciling that with the long wait before anything happened. It feels good that something is happening now. I have to let go a bit too as there will be lots of unknowns.

I think I am ok about losing my breast but I am feeling all kinds of emotions about it. Like - do I mind being asymmetrical?! How much of being a woman (or being perceived as a woman) is bound up with my breasts?! Will it be weird when it comes to sex? Will it give me back pain if I just have one GG cup boob? What if prosthetic breasts look or feel weird - am I brave enough to go out as the lady with one breast?!

I like the sound of your GP!

I found it the same with maternity care - through laziness rather than malice, I think, a lot of medical professionals feel they know best and forget the importance of staying patient-centred and letting the person at the centre of the experience have the right information and agency to make choices that are right for them. But I did also connect with some incredible patient advocacy and maternity rights organisations, so I feel like things are changing more these days. I battled to have a home birth with a high BMI and 'against medical advice' and it was 100% the right decision for me but it was psychologically hard for them to allow somebody to make choices that went against their usual pathways!

@londondragonite i had my single mastectomy 7 weeks ago (also opted for reconstruction at the same time). This was the first treatment I had. My operation went really well and recovery has been fine. It was good to get things moving as the investigation period went on for a couple of months which I found really hard. The next stage for me is chemo (starting on Monday). Then radiotherapy.
I don’t have much advice due to different operations. But I would say make sure you do all the shoulder mobilisation exercises religiously as the sentinel node extraction can leave everything very stiff.

@londondragonite

Are they planning on doing a reconstruction at the same time? I have to say that one GG breast may cause issues with your spine or ribs. You need to speak to your BCN about weighted inserts for your bra but you really do need to discuss options about what to do before surgery if you can or definitely mention it at your post op check up - don't be afraid to push for a commitment from your consultant about how they plan to deal with issues afterwards and don't be fobbed off with vagueness and a promise of sorting it later.

What type of BC have you been diagnosed with (I'm HER2+) and have you been given a chemo/radiotherapy plan yet other than surgery/chemo/RT?
I bought new supportive, softer bras and sleep bras from M&S but with GG breasts you will find that M&S probably will not have post BC surgery bras in your size. M&S are supposed to have BC trained bra fitters in every store but I found ours to be utterly useless. I asked if only women with small tits got breast cancer when I contacted customer services but never got a reply 😆

@Penguinsa

This is what worries me about vague promises to sort my other breast out. The consultant said that I would have to wait a year (yeah but not which year) and would have to undergo a robust psychological examination before they would agree to remove my left breast. I don't want to be a doubting Thomas but it seems very, very unlikely that it would ever happen seeing as psych assessment wait times are currently standing at 4 years I will be long dead by then!
Thank you for the lovely pic of the gorgeous Mr Floof. He's a typical Maine Coon isn't he? DC's girlfriend has a massive ginger one as MC's are Iceland's most popular cat - virtually everyone has one apparently!

Thank you for all the talk about pensions. I have dug out my civil service pension stuff and although I can't take it until I'm 60, I can apply to take it earlier if I suffer a life changing medical event. I think that cancer is a life changing enough. I just need to email/phone them.

Hi @MothralovesGojira, all good food for thought!! I decided that I didn't want reconstruction. Partly to minimise operations but mostly because I didn't like the idea of how it might feel. None of the options were great though. I think the options are definitely easier for women with smaller breasts. I guess I will have to see if it causes any back problems. I really don't want to mess with ”the good breast" if I don't have to 😁

I've got triple positive IDC, grade 3. The main bit is quite small at 13mm but with two other 3mm bits annoyingly distributed elsewhere in the breast which meant I couldn't have a lumpectomy. I think/hope it's stage 1 but they've warned me that people often get ”upstaged” after surgery.

I've no idea what to expect in terms of chemo as I haven't seen an oncologist yet but I think the treatment plan for triple positive is always pretty similar and will be six 3 week cycles I think and then some extra Herceptin?

Same. I have a teaching pension which I can't take until 60. If you take it earlier, is it greatly reduced? I've also a small lump sum which can be taken at the same time. Trying to decide what is the best option. Wait until I can no longer work ( if that happens) or start the pension ball rolling now. I can't survive on PIP alone ( DP's money goes straight on bills, so no spare cash there!)

@londondragonite

Your team are right about staging - nothing is absolute until they have a look at what's taken out. Are they taking out any lymph nodes or taking samples?

To be honest I would ask your team about reconstruction at the same time. It's possible that they'll do the other one to match - I know that my hospital do it at the same time. Please do not think that I'm being rude but have you had any therapy or counselling yet? The gist that I'm getting is that you're a bit dazed by this whole thing which of course is quite normal. I think that you're going to struggle with one GG breast and any surgery of this kind is a horrible shock. If you decide that you can't live with one huge breast then you are then looking at a wait of several years to get it fixed or paying ££££'s to get it fixed privately. Gosh, I hope that you don't think that I'm being rude - I'm just concerned that you're fixating on the boob rather than seeing it as whole picture.

@Enigma52

Well a quick glace at my paperwork seems to indicate that there's possibly tax to pay and possibly it will be a little smaller. I discussed it with DP and he agrees with me that seeing as I'm unlikely to reach 60 then I should look at claiming it now as something is better than nothing.

How old are you @MothralovesGojira
I hope you DO make it to 60!

I'm 53, and no idea what's best.

A colleague did 40 years service, then the day after she turned 60, she had a heart attack and died! Fit and healthy.

I’m nhs and was lucky to be in the pension that had 55 as retirement age and the new rule meant they couldn’t refuse you to go back. So that’s what I did this year took the lump sum and I get £1000 a month (26 years full time) plus a part time salary, I can’t complain at all although my rent is over a grand so I will be buggared if my sick pay ends.

i was just saying to my mum that for once in my life I have money spare I even won on the premium bonds this month but I have this hanging over my head.

its my 4th one tomorrow and I’ve had a strict word with myself. I just have to crack on.

A grand a month for rent? Wow, that seems alot ( I'm in the north west).

Yes pensions are important at this time of life when health isn't all that it should be. My teacher pension will only be about £450 a month, then PIP. I definitely need to keep working for a long as I can , as my LG pension isn't going to be much at all.

@EachandEveryone do you work part time and claim sick pay?

@Enigma52

I am 57 so I have another 10 years before Retirement Pension anyway. I've discussed it with DP again and he thinks that I should email and ask about claiming and then see what the consultant says about my prognosis at the end of this month.
There really should be a way of claiming RP earlier if it's likely that you won't be around to claim it when it's properly due.

I have a mammogram and ultrasound this coming Monday but I still don't have a consultant appointment as they've still not phoned me to rearrange the one they made for the 16th (even though they knew that I was on holiday!).

Oh and my PIP review form has arrived 😖

Hi everyone, the pension rules do seem desperately unfair in situations like these. I’m a way off pension age, so fingers crossed when I get through all the treatment I’m still fit to do my job.
Speaking of treatment, I have my first chemo on Monday (ec-t). Does anyone have any tips for things to take / do? For instance, is it good to have breakfast, or would it be better without? I’m thinking of having some podcasts to listen to and a book to read.
Im also going to try cold-capping. Any advice welcome!

@Nomorebear Have breakfast! Podcasts a good idea- keep your hands warm to make cannulas easier, drink loads of water. Remember you’ll be hooked up to a drip so only able to use one hand mostly. Snacks are useful, headphones- blanket/ layers as temperatures vary.Dress for comfort.
You will come home with a drug goodie bag- take all the drugs on offer to counteract side effects. And be aware you are likely to be WIDE awake as a result of steroids- be wary of midnight online shopping binges!