Cancer support thread 90 - still the best threads no one wants to be on

[LemonDrizzle10]

Last one filled up quickly!

@LemonDrizzle10 sending sympathy. Here’s hoping you get some better news and the low patch passes off like bad weather.

I saw my favourite PT who started fixing my shoulder with laser and resistance exercises. It feels better already but also I feel better for making something happen. It’s the start of the Great Recovery.
I had very painful joints and stiffness all over after finishing chemo the first time. Weirdly it has gone quiet this year. Maybe the oral chemo is subduing the inflammation and it will burst forth when I finish. I hope not.

Last night we joined friends for an end of season dinner. They kept saying how well I look and seem to think I’m on the mend. I still have only 10 percent energy so it’s hard to see it that way but maybe I am mending slowly.

@TopOfTheCliff that's interesting. Maybe it is the after-effects of the chemo then.

Either way, it's not the gig I was originally blaming 🤷‍♀️

@TopOfTheCliff
Love the concept of The Great Recovery! Think we should make it a thing.

It may not be to the person we were before, but it gives the next stage - after active treatment or during maintenance treatment - an identity of its own.

Rather than this vague state of ‘what now’, which I suspect is a letdown in some way..

If you listen to the specialist nurses they are full of forebodings about the mental collapse that happens after treatment ends. I’m sure there are lots of people who struggle but for me it is relief and a time of rebuilding, at least until the next brickbat hits me in the face 🙄
After magic yoga we took some of the newbies out for coffee. Their entire cancer journey fitted into the time I’ve just been on oral chemotherapy. It makes me proud of how long I’ve been battling away like some grizzled old veteran and careful not to sound dismissive of their traumatic experience.

Happy to hear from those of us who are getting past the cancer diagnosis, and beginning (tentatively) to live life again. After three cancellations, planning a six week trip to Aus and NZ at the end of the month. No-one will insure me though!

6 weeks in Australia and New Zealand sounds wonderful AJ, very jealous of that. Sorry about the insurance. Are they saying what the issue is? I did go to Maldives uninsured but that was in a resort and with husband and much shorter. I always worry with insurance if I have mentioned every medical thing as there were so many things investigated. Staysure have heard used. Mowly had a good one but can't remember who she used.

Just had head CT this morning with contrast. Doctors striking outside. Next week it's surgery discussion re diep though no idea what wait is now. No Tamoxifen for 6 weeks. Will be interesting to see what is menopause and what is Tamoxifen. Results of CT and bloods 9 November. Trying to track down kitchen guys for the last days work, a bit like trying to phone hospital on the main number. 🤔

@Fantasea have you had any issues getting your niraparib? I was told there was supply issues and to wait for a while before collecting my new supply. I've got 11 days worth left and they sill aren't in. I'm going to contact my specialist pharmacist tomorrow but I wondered if you had heard anything.

@Lisdeflores I picked up my month's supply of tablets last week without any problem and haven't been told of any issues (yet). I always have my review on the 28th day, so have run out immediately and then have to collect later that day or the next to restart. I'm hoping this is just a one-off to you as it just adds another worry to the pot. For the last few cycles I've had tablets whereas I used to have capsules. Are you waiting for capsules or tablets and could this be the cause of your delay?

The Great Recovery. I love it and I want it too!!! @TopOfTheCliff you are inspiring a lot of us here, I think, with the things you do and say.

I know exactly what you mean about trying not to sound dismissive of people's trauma when they say, eg how traumatic it was to have stage 1, grade 1, ER+ BC treatment, that was all done and over with within a couple of weeks, with a normal breast afterwards, no chemo, minimal if any radiotherapy and a low grade cancer. I don't think they realise how lucky they are as cancer patients to have that type. But nobody is going to feel lucky when diagnosed with cancer, obviously, and I do absolutely need to remember that.

@ajandjjmum

have you tried the company called Insurance With?

What a coincidence so many of us have got knee problems at the moment.

This is what InsuranceWith say about the cancer travel cover they offer:

We will consider covering all different types of cancer. Shown below are the most common types that we are asked to cover. However, if your particular cancer isn’t shown, don’t worry, because you can still get a quote by entering your type of cancer when prompted during the quote process and proceed from there.

Alternatively, you can call our Customer Service Centre on 0333 005 1066 and they will be happy to process the quote for you.
Insurancewith has bespoke cancer travel insurance cover for the more common cancers such as:

• Breast Cancer
• Bowel Cancer
• Lung Cancer
• Prostate Cancer

The Insurancewith travel insurance for cancer patients policy was created by people with first-hand experience of cancer. They really do understand your problems when it comes to buying travel insurance that asks more questions specific to you and your treatment. This ensures that you have the most suitable policy for your needs at the most appropriate price. We also have cancer travel insurance policies for rarer cancers such as:

• Bladder Cancer
• Kidney Cancer
• Non Hodgkin Lymphoma
• Ovarian Cancer
• Pancreatic Cancer
• Skin Cancer
• Stomach Cancer
• Testicular Cancer
• Uterine Cancer

@Fantasea I didn't even realise that it came on capsules untill earlier today I've always had the tablets. Hopefully it's just a glitch and can be sorted out. Your right though it's just one more thing to worry about!
@ajandjjmum NZ and Australia will be fabulous for recovery NZ especially. I travelled to Northern Spain this year and found that I couldn't get travel insurance. I went with fingers crossed firmly that I would be ok(obviously I'm not recommending this) Even companies that said they specialise in cancer cover came back with eye watering quotes.
Is health care in Australia and NZ still reciprocal because they are members of the commonwealth?

@Lisdeflores I think the EHIC is still valid in Spain at least though, isn't it? There's also a GHIC, but I don't honestly know who's entitled to what or what each one now covers.

My treatment plan has now finished, but I will presumably need to declare my diagnosis and treatment I had when we travel abroad next time (will be within EU) because it was so recent. I had very cardio toxic chemos eg Epirubicin and also a year of monoclonal antibodies that are also cardio toxic among other things.

Does anyone know about this once the treatment plan has ended? I have Breast Ca but hormone negative, so no ongoing Tamoxifen or similar.

@ajandjjmum NZ sounds truly wonderful, I'd love to visit. Doubt I will though. I hope you make it there and have a fabulous time (and Australia too!)

@SummerCycling I did have my GHIC card although I'am unsure what it would cover and luckily I didn't have to find out!

@ajandjjmum Australia offers reciprocal health care for UK residents but of course that doesn’t help with other aspects of insurance like cancellations, lost luggage or repatriation. This website has more info: Reciprocal health

Sign me up for the dodgy knees club! They are going so well with my numb feet from neuropathy. I have my first appointment with the exercise physiologist at the cancer hospital on Wednesday and hoping to get some advice on best way to exercise with bad feet and knees. And now I have a dreadful streaming runny nose. It’s been going for a week and I have no other symptoms so I’m assuming it must be an allergy rather than a cold. But it’s getting me down and I look like bloody Rudolph from all the blowing and wiping grrr. But definitely a sign that I’m in recovery mode that I’m fed up with something as simple as a runny nose!

My GP has been on at me to see a psychologist for my imminent mental collapse but so far I seem to be going ok.

Apologies, I thought I had already responded to this but it seems not. Bloody brain fog.

Thank you so much for sharing this with me, it's good to have a little context, not least because breast cancer can be so unique to the individual. Glad you're starting to feel better, particularly mentally, and that the end of the road is finally coming into view. I'm still very much at the start and won't be finished chemo until late April. That seems a long way off, more so as I naively thought I would be finished by Christmas. This one!

Your 12 rounds sounds very
hard. Is it correct to presume you were on AC-T? I found out today I will have 8 cycles of AC-T (4 A-C/4 T), followed by 3 weeks of radiotherapy to my chest wall. Did you have triple negative cancer, hence chemo prior to surgery? Or was it just to shrink it prior to surgery?

Due to my BRCA 1 & 2 mutation double whammy, the MDT spoke to someone at Guy's whose area of interest/research is in BCRA about me to double check his opinion on the best treatment for me. The guy at Guy's wants to meet me at some point and add me to one of his studies around BCRA, so finally feel like there's some use for me going through all this.

@doublec are you having 2 weekly chemo then? I had that regime second time round and it gets it over with more quickly than 2x 3 x 3weekly EC-T . There isn’t much time to recover between rounds though.

@TopOfTheCliff No, every three weeks, so a week or two shy of six months of AC-T in total.

Apparently my double BRCA makes chemo a bit more of a risk for me, so I don't think they dare put me on a shorter cycle.

@doublec

I had 4 cycles of EC chemo 2 weeks apart.

Then the plan was for 12 weekly cycles of Paclitaxel, but I had gr3 neutropenia week 2 and anaphylaxis week 4, so didn't get much Paclitaxel. I then had a couple of Abraxanes before stopping due to neuropathy.

My radiotherapy was 3 weeks to chest wall, axilla 2-4, and internal mammary nodes.

Chemo was before surgery, radio was after.

That sounds good your MDT are checking with the specialist at Guy's.

@Lisdeflores

Glad to hear you enjoyed your well deserved holiday without needing health care.

@Remaker

It feels like a full house doesn't it, neuropathy in the feet and dodgy knees. My knees are competing to see which can swell the most. The right knee was winning for ages, then suddenly the left outdid it by quite a lot. I'm waiting for an osteopath appointment now, he's been helpful with the right knee before. I hope your exercise person has some good ideas; do share them if you feel like it.

That's so nice Australia and the UK have a reciprocal health agreement. I hadn't know about that.

@doublec yeah no worries. Yes it was AC-T as far as I am aware. I was triple negative. From what the oncologist said it was for both reasons, because of the triple negative but also because they wanted to see how well it responded to the chemo. Apparently I had an exceptional response which is just as well as it nearly killed me.

I don’t want to alarm you, I think I just had a very bad run of bad luck with everything to be honest. But the chemo caused dvts for me and I ended up very unwell. So just really keep an eye on the breathlessness if it happens.

I also thought I would be through it sooner, but because of the problems I experienced it took a longer time.

With cancer it is almost impossible to plan. It goes against every female instinct I think!

It’s been an extraordinary experience. I’m still processing it and god knows how long that will take. Don’t get me wrong it was truly awful and I hope I never face it again but it has made me a bit kinder to myself now I’m on the other side. I’m still a bit of a stress head but I’m accepting that I just can’t do everything anymore and that’s ok. It’s just small steps. For example my aim this week is to work three days and maybe do a yoga class.

You’ll get through it, step by step is the only way. X

@ajandjjmum I was done with active treatment in November last year, and insurance with covered me for Lanzarote last May and for New York this coming January. I had to make a small claim for DD and they were very quick.

On The Great Recovery, I had a period where I thought I’d had a recurrence, but before, and after that I have actually mostly been okay. It is a bit weird trying to plan things and thinking is it going to happen, and I do have the niggling thing there all the time, but I wouldn’t say it is significantly affecting my life. I’m lucky though, and that I have minimal side effects from hysterectomy and chemo, I do have some short-term memory loss and menopausal, hot, flushes and night sweats, but I’m not really coping with anything that significantly affecting my day-to-day life. I would like that to be more support though, I have got a small network of other cancer survivors, but that is what I’ve created myself rather than had any official help. I have got a small niggles, I think my iron level is probably still too low, but the oncologist and GP don’t really seem to care. I do think there should be some after-care program, it would benefit the NHS in the end if they were encouraging us to eat and exercise, and to think about any nutritional deficiencies that might make us more vulnerable to illnesses, maybe that will happen at some point in the future with the development of all the research about the microbiome. I do all those things already, but it would be nice to have some support rather than feeling alone with it.

Name change as potentially outing.

I do think there should be some after-care program, it would benefit the NHS in the end if they were encouraging us to eat and exercise, and to think about any nutritional deficiencies that might make us more vulnerable to illnesses, maybe that will happen at some point in the future with the development of all the research about the microbiome. I do all those things already, but it would be nice to have some support rather than feeling alone with it.

Totally agree .... as if by magic... 🪄

My friend works at Newcastle University and knows this researcher who's been awarded a large grant to to create such a programme.

https://breastcancernow.org/breast-cancer-research/our-research-projects/developing-programme-support-women-diet-exercise-after-breast-cancer

She told me to "just email him" and he replied asking if I'd like to be involved 😀 (no idea what that looks like.)

I can ask if you have to be Ne based or you could just email him yourself sierra, as it sounds very much like this is an area you both have experience with and can see the need for. I don't know if it's exactly what you mean, but if not it could be worth letting them know about what you do feel post cancer care needs.

Has anyone had their booster yet? It doesn’t feel like five minutes since I had the last one.

@EachandEveryone

I've lost count how many Covid vaccinations I've had now, possibly 6 (?) My most recent was in May, so I think I need the next one in November?

I received an email invitation recently again though.

I'm going to have the flu one this Friday I think. I was always eligible for that due to asthma and being prone to lung infections.

When was your last one?

I have not had one for over a year now, keep getting reminders but now not vulnerable so not sure it's worth it. I got quite ill after the AZ vaccines though Pfizer was OK. If I still had chemo I would do one.