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

[LemonDrizzle10]

@tilllly and Daisy.

@Nomorebear

I used to take a big bottle of water, headphones, tablet to listen to music & watch Netflix, a light weight scarf and for some undefined reason of my own - a spare pair of knickers! I never took any food as I ate before I went but most units have drinks & food available - ours had M&S sarnies, crisps and cake.
I can't give any advice about cold capping but you may want to invest in a beanie hat as capping may save your hair but it will thin a bit. Also buy a couple of boxes of Immodium Instants as stomach upsets are common. Don't be afraid to ring the 24/7 oncology emergency line if you need it for any advice or you feel ill.

I am lucky enough to be in the old NHS pension which has now closed down and we were advised to take it if we were at the age which is 60 for most people but if you had a speciality it is 55. So i did at 56 when I knew I was facing chemo again. Im single no children so it was a no brainer really. The new rules say we can carry on with our jobs (nurse) for obvious reasons so i then dropped some hours and work 28. Which im not at the moment Im off sick for at least six months so I get sick pay from the NHS. I wont be eligible for any benefits as I now have the lump sum. I would like to think everything will be fine and I will work til Im 65 but nothing is guaranteed. Im hoping to hang on to my job as you start to think about death in service and I will need to give a good sum to whoever will take all my cats on. That worries me and I know how trivial it sounds when you all have children 🙁

Im having my 4th chemo tomorrow. I never cold capped the last time as I wanted to be out of there as quick as possible. I lost all my hair but it grew back really quickly. One thing I did do is get my eyebrows microbladed and have done again. This new chemo hasnt affected my hair.

i take too much and never use it. Boiled sweets are good. Plenty of water. They feed us but i always have a banana and some rubbishy breakfast bars etc. i take earpods but never use them in too busy talking to people😀 also if Im lucky the massage therapist will be around that takes a good 30 minute. I usually put a fiver into the donation envelope. Then I go home and feel sorry for myself. Ive deffo had the runs this runs this time so immodium is a must and gaviscon. Also get some sleeping meds from your gp. Good luck!

Sorry I seem to have had a confused rant about pensions but thank you all for advice! To clarify, I was going to be able to take my pension without any penalties because the GP and Oncology were happy to say I was never going to be fit to work again. I am 52. I’ve held off taking it because I would need to basically hand my notice in and would then lose death in service for DH. I currently get half pay through works insurance and I get ADP - just the lower level but hoping once I update I’ll get the higher rate as I need an automatic car to try to keep some sort of independence. Well time for DH to help me lie down in bed, connect my nighttime urine bags and bump a couple of dihydrocoedine. Sleep well folks!!

@EachandEveryone no kids here - just two collies, who have become my shadows 😔

I know my girls wont leave me alone☹️

Yes he's a Maine Coon, I got him during my chemo, most cheerful gentle cat ever which is just as well at 1.2 metres of him.

I never took much to chemo - I did make sure I ate and drank a lot before as that dilutes the effect a bit. They have food and drink there as well though sometimes need to ask. I took things to reduce neuropathy as on Pax so an ice box from camping shop with ice lollies, frozen peas and ice for hands and feet and ice socks. I didn't cold cap as they didn't offer it but did own version with frozen peas and a tight chemo hat which worked. Worth having clothes can get off for toilet with one hand as can get tricky when cannula and meds attached to you. Took hand gel as well.

I had reconstruction later but op was in Dec 21 and they told me a year on waiting list - what they didn't say is they don't put you on list until a year after chemo and radio finished and the year has lengthened due to strikes. I am about a B cup which is easier than being bigger but I hate having one cut off and one there, saw a survey saying only 7% were happy like this. But they would have made me wait another 1 to 2 months for reconstruction and just wanted cancer out. There are a lot of prothesis but its not the same and a nuisance to need special bras and swimming costumes, I use the swimming ones all the time from Ameona. I also just wish could wear normal tops in the summer. There's also another op a year after next one to tidy up. Once the cancer is out its classed as cosmetic so can wait so long.

My hospital gave Imodium under its non-branded name in industrial quantities (begins with l) and ondansetron is also good for stopping sickness and stomach issues. I got a digital thermometer and took temp twice a day, call oncology 24/7 line immediately if high even in middle of night. I kept a symptom diary. Also chemo buddies are good, I had 2 people doing chemo at same time so you can moan together (or be very positive together if you aren't a moaner like me!) Macmillan offer counselling via bupa. Its a good time to apply for benefits if not done so and need them as chemo puts you in support group for esa after 13 weeks or so.

Hello I was diagnosed with Acute Myeloid Leukemia (AML) on 10 October 2023 following a routine blood test,

I've had 3 rounds of chemo (still have eyebrows!) and had a stem cell transplant in late March 2024,

All was going well until day 89 post transplant and the leukemia returned which was a shock to the medical team as well as me. Am uncharacteristically despondent in past week. Partner is in bits.

I have FLT3 mutation so now on Gilterinitib (XOSPATA) while they wean me off ciclosporin.,

Am thinking of medical retirement but as p/t due to cheonic health andnow on half pay it probably be very much,,,,

Have enhanced PIP since April which was sorted by Macmillan who have been brilliant,

Welcome to this thread @PaulaTrilloe

I'm sorry to read your diagnosis. I've heard that stem cell transplants are a very big deal and tough to get through.

It's not surprising you feel despondent that the leukaemia has returned after going through all of that, then just when it had been going well. I'm glad you've found our thread.

I don't know much about leukaemia or the treatments, but I looked up the Gilterinitib you mentioned and discovered that it's a targeted therapy. I also had two targeted therapies for 18 cycles because my breast cancer subtype is HER2 positive (ErbB2 oncogene) which is targetable, I guess like your FLT3 mutation makes your cancer targetable by Gilterinitib. I will keep my fingers crossed that it works well for you. Have they given you an idea when they will test that?

Good to hear MacMillan sorted out PIP for you. Unfortunately, I don't have the knowledge to advise on medical retirement.

How understanding is your workplace?

Thanks for the warm welcome
@SummerCycling

I'm a public servant (LGPS) and my manager has been very understanding as he is a cancer survivor himself.

My grandboss had suggested the ill health retirement but the death in service life assurance is 3X my annual salary so I am going to get some estimates.

I'm very fortunate I got 6 months fully paid salary and 6 months at half pay.

Am having a lumbar puncture next week to examine the impact of this targeted drug....

@PaulaTrilloe

Under the circumstances you probably have nothing to lose in asking for a 'quote' about taking early retirement on medical grounds. Like you I could resign and let someone more able do my job but I want my death in service payment for my DC's so I'm hanging on although it's worth little.
You have nothing to lose my asking for details in writing and see how your tests go before deciding or postponing a decision again.

@MothralovesGojira this is what I'm thinking re: ill health retirement versus hanging on for death in service payment. I originally nominated DC, but they have their own trust fund money, so changed to DP. He's older than me, so I may have to change it back to DC anyway ( assuming I outlive DP).

The process did IHR looks complicated and long? Particularly with the different tiers.

It's hard to know what to do for the best where cancer is concerned. I thought I was done and dusted in 2009/2010, particularly as I'd had chemo and taken tamoxifen. Alas, the beast returned! Just going to take it day by day I think re: work and make decisions accordingly.

Hope everyone is doing okay this weekend 🌞🌷🙂

I hope you are feeling better now, and wishing you strength and good luck for your run of chemo from next week! It sounds like we are on a very similar timeline but I am about two months behind :-)

Will definitely take your advice and do my shoulder exercises religiously! Having not been much of an upper body exerciser at all before now - I cycle everywhere but basically do nothing else - I think I am going to have to change this and get fitter generally!

No, I'm just going flat on one side. I definitely don't like the idea of reconstruction, I don't really know why but I have never wanted it. If it is a real disaster I could campaign for a breast reduction on the other side.

I found a lovely organisation called Flat Friends UK which has given me a lot of confidence to go with my gut feeling and go flat after my mastectomy. I have looked at all the photos of all kinds of reconstruction and implant and I really don't feel it is right for me.

If my genetic tests come back with anything ominous I would be tempted to have another mastectomy and go completely flat - but I think that is relatively unlikely from what I know my my family history.

They have given me a temporary 'softy' to wear during recovery and I will get fitted for a proper prosthesis at 8 weeks after I have healed up.

I'm ER+ PR+ HER2+ and grade 3 so I want to reduce my risk as much as possible - the other option was a wide excision. Unfortunately I haven't even met the oncologist yet so I have no idea what kind of chemo or how much radiotherapy - although according to the breast surgeon if I have the mastectomy and my lymph nodes are clear they may not want to do the radiotherapy. He has mentioned the chemo being every 3 weeks alongside immunotherapy so I think that may be TC + Herceptin?

Just went and bought my post-surgery bras from M&S. They are not the most beautiful things I have ever worn, that is for sure! But they seem comfy enough.

Thanks everyone for all the chemo tips, I’ve made notes and have an Amazon delivery on its way.
Thankfully my work are being lovely about everything. I’m going to try and work as much as possible, but nobody is expecting anything if I can’t. Yes, this is probably completely deluded of me! My 10 year old is struggling quite a lot with it all, so it’s important I’m positive for him.
@londondragonite i don’t know how you are feeling physically, but my surgeon told me that any exercise I could do the week before the op would be beneficial. I also made sure I was eating plenty of protein.

As a fellow big boobed bc patient can I ask how you know how much your boobs weigh?

I'd love to know how much mine add to me!

Just popping in to say hope you ladies are all well as you can be.

I went and had a look where I'll be having brachytherapy today and I think I've made my anxiety surrounding it worse whooops, I'm a day patient so have to go in 3 times over 3 weeks 😭

In more positive news I rebooked my Japan trip for January and I'm just gonna pray my 12 week scan in November comes back ok because I don't think my heart can take it if I have to have my booking held again. But at least for now I have something to look forward to.

Big virtual hug @catmomof3

At least you've had a look at the location and know how to get there, that always helps me.

Good on you for rebookiing your holiday

Best of luck @catmomof3!

Thanks for the exercise tip @Nomorebear. I am trying to stay as active as possible which is easy as my girls are 6 and 10 and I cycle for the school run and then to work. But I am increasingly conscious of how little I exercise my arms. All this will have to change! My 10 year old has been very matter of fact about everything but my 6 year old is really struggling with the uncertainty and has lots of fear about change and what will happen over the next year.

My single mastectomy surgery is on Thursday morning and I have hardly had time to think about it yet as I have had so much to do with wrapping things up at work.

@catmomof3, having something to look forward to sounds like a very good idea! Have you been to Japan before or is it a first? Are you planning specific trips and sightseeing?

@londondragonite i don’t think you have to worry about doing arm exercises now. But if they do a sentinel node extraction then you should get some physio exercises to help mobilise the shoulder. Would highly recommend doing those regularly (especially if you will have radiotherapy afterwards).

@tothelefttotheleft
I weighed my boobs on our kitchen scales. We have a high-ish breakfast bar and our kitchen has a blind spot there (from my rear neighbours view) so I weighed them one morning out of curiosity more than anything else. DC has T1 diabetes so we use a flat Salter's scales because we can put plates & bowls on it to weigh food - it's also the ideal size to weigh a large boob!
And I know you all want to know why I did it. I was sat in the kitchen after breakfast and thought "I wonder"...????…and then "Mmm....why not?"

@catmomof3
Well done! You've come so far in what seems to be a short time. A few months back you were sure that you'd never get through it and here you are. Your anxiety over the brachy will not stop you and you'll triumph over it and reach the other side as you've done with everything so far. Plus you now have a lovely holiday to look forward to as well.

@Enigma52
How did you get on at work this week? Is the last week before the holidays?