Cancer Support #70. Please post on this thread, not #69, If you have cancer or are undergoing tests for cancer. Rant, rave, scream, cry – whatever helps. Supportive lurkers for Leslie welcome on #69.

[TwitterQueen1]

Thread #69 is filling up with messages of support for one of our own who is very seriously ill. Leslie told me a few weeks ago that she didn’t want any such messages to get in the way of those who need support through their cancer treatment so we are starting a new thread just for those who do have cancer or who are having tests. Could we respectfully ask lurkers and supportive posters to confine their comments to thread #69? Thank you.

We normally start with a brief introduction to our cancers – I’ll kick off. Ovarian cancer dx March 2017. Now on third-line treatment with a trial providing targeted and chemo drugs taken orally.

Red the uncertainty is definitely the worst bit. And don't panic about not having surgery. Even if you did you'd probably still have chemo anyway (I did and so did all the other bowel ladies).
As hard as it is, take it one day at a time until you have a definite plan in place. Then you'll feel more in control. And the more they know before you start treatment, the more tailored to you it will be and it will give you the best possible outcome.
Good luck.

I hope everyone else is ok. Sorry for not name checking.

We now know that our dearest purple died of an infection which became too severe for her body to fight. She was with her dh when she went and looked peaceful and calm.

redspook try not to fear chemo too much. Remember we've pretty much all had it. Many of us have worked through a good part of it too. Surgery is a different beast of course! The medics seem as if the want to throw everything at you, which is good, they just need to work out which one first! And RT is different again.

FWIW I had chemo to reduce the size of the tumours then surgery then more chemo. It's a shit time but there is a plan being worked on....

Thanks so much dulce and TQ, your support is invaluable.
I have stayed away from Google so far (don't want to read about outcomes) but I have researched combined radio and chemotherapy and I doubt I'll be able to work through it.
I was geared up to spending a couple of months off work recovering from surgery and feeling better day by day. It now looks like I will be feeling worse as it goes on.
There were a couple of questions which brought encouraging answers - I can probably have most of the treatment closer to home (45 minutes away as opposed to 2 hours) and with the combined therapy I may not lose my hair.
Of course I feel like my hair shouldn't be a consideration, but it is. I can't help it.

Everyone worries about their hair! When I was told I wouldn't lose it, I was massively relieved. One less thing to worry about and right now you need all the positives you can find!

I have talked to DP now, and we have agreed that we will tell our two boys (early 20s) when we have the treatment plan.
I'm dreading that so much - my Mum died of breast cancer when I was barely out of my teens, so I was that young person. However, it isn't fair to shut them out.
I had so hoped to be able to deal with it privately, now it seems that the world and his dog will know. I live in a small town, and I will feel so exposed. People treat a person with cancer so differently.

RedSpook - I think you are following a very good course of action by having a brief pause and then telling young adult DC when you have a treatment plan. I did that with my teens, and it made a world of difference to be able to add the ‘and this is what we’re going to do about it’ bit. The waiting and not knowing bit right now is very tough on you, you can spare them the ‘not knowing’ part by holding off until you do

RedSpook I am sorry you are having to wait longer to find out the treatment plan. And quite understand why you are worried about not having surgery. I have to say, though, over two weeks after my "everything out" radical hysterectomy, I don't feel like it's a steady path to recovery, it's slow and pretty horrible with side effects of surgery including leg pain, and bowels which have forgotten how to work!

But I hope when you do have the appointment, you feel ok with the plan.

Hi red, just echoing the others really. Telling my "kids" (aged 16-25) was the hardest part but having a treatment plan made it easier. My surgeon suggested I bring them along to an appointment so he could answer any questions they had. The younger two took up the offer and said they found it useful. He was very matter of fact and positive about treatment outcomes which helped them.

Thank you for telling us that about purple, Dulce. She didn’t get to the hospice? So sad that she never got to go home.

I don’t know what she believed about the afterlife (or even what I believe) but I’d like to think that Leslie was there to meet her with the hugest hug.

Hi again everyone

Been reading through some old threads (59-61) to get a sense of Purple’s journey. In doing so I obviously saw a lot from Leslie too, and what she went through. It’s really heartbreaking stuff and what shines out are the sense of friendship and support on this series of threads, the many frequent laugh out loud moments and the incredible pluck they and frankly all of us have in facing this life changing stuff which sometimes moves at a snail’s pace and sometimes at a hideously fast gallop. Love to all whether here or departed.

Redspooks I wanted to offer a handhold to you as you must feel very shaken and uncertain after the phone call. I can’t help but feel there must be some (a lot!) more information they can share with you about where they thought you were and where you are now/where they suspect you are. It may have got lost in the phone message. I have everything crossed that a solid treatment plan will evolve that will tackle whatever you’re facing and you can take your first step to getting better very soon.

As for chemo, totally get that you wanted to avoid it. I did too. I was pretty reconciled to a cancer diagnosis so had been doing a bit of plea bargaining with god in advance - ok I’ll deal with it, but just radiotherapy not chemo. On the day that was given short shrift and I quickly changed to ok, I’ll have chemo but no mastectomy! Your perspective will probably shift as you hear more about what’s in store. Chemo is obv no walk in the park and you know it basically involves poison, but it is doable. With some time to prepare mentally you’ll be more than able to get through the sessions. But I realise you’re not there yet, and that’s ok. A diagnosis is huge and one that is still moving is huger still. Be kind to yourself.

Cancer does change how people treat you, for sure. You can influence that by guiding them on what will and won’t work for you. It’s ok to tell them for example I don’t want head tilts and bunches of flowers and ‘you’ve got this’ t-shirts and I do want home cooked lasagnes brought round and invitations to the pub...The more you guide them the better they are likely to be at giving you what you want. Most people do want to be helpful and sensitive.

My thoughts anyway - anyone else got any tips or disagree?

My update for today is that I’ve had my fourth and final EC cycle today (this is known as the red devil and is fairly hardcore by all accounts) so I am through that bit and in a couple of weeks embark on 12 weekly cycles. Despite this being the last EC today, which should have made me glad, I definitely needed to get my big girl pants on as I felt pretty reluctant and jaded for it. But it’s done, now comes the yucky tasting food for a few days...onwards and upwards.

Hope everyone else is doing ok. How are your fingers and toes meercat? Sorry not to namecheck more.

Brassica well done on getting through the 4 EC sessions. One stage to tick off and put behind you. I am with you on the yucky tasting food! A cruel trick that to make even our favourite foods taste like lard or worse. (Whoever thought I would find a day that I didn't enjoy chocolate.) Fingers and toes are still numb but don't seem to be getting worse at the moment. I am seeing the oncologist tomorrow so will see what he has to say.

Redspooks I definitely understand your reaction to the change of plan. To some extent that happened to me too. I was told before surgery that I would be having 'tablet treatment' afterwards. When I saw the oncologist after surgery I was shocked to hear that because the tumour was ER and Her-2 positive I would be having chemo, radiotherapy etc. and that in all treatment would go pn for two to three years. It was the word chemo that was such a shock.

I wont pretend that chemo is easy or pleasant but it is doable. I minded a lot about my hair too and am cold capping. Again not pleasant but doable. This thread helps a lot because there are people here who have already been where we are now and who care enough to support others.

Thanks to all of you, it's so good to hear from people who "get it".
I went for the PET scan today, was OK and it's one step further towards knowing what's happening.
That sounds like real progress brassica, you're certainly tackling it head on. Hope I can too.

So when my oncologist examined me today he couldn't feel the tumour any more so I am tentatively hoping that means the drugs are working! It makes the thought of my last two Chemo sessions more bearable. Now I just need to get my head around the whole mastectomy thing.

Hope everyone is doing as well as they can be this evening x

That sounds encouraging snows, fingers crossed.

I don’t have the energy or mindbrain power to say anything except that I am sending love to you all and also 🍷 or or or or or whatever you need today. Crappy weather, crappy mood for me. Even the fact that I finally have pretty feet and hands after having a pedi and mani yesterday cannot draw me out of my post-Zometa and Zoladex funk. Feeling sorry for myself. Need to snap out of this. Meh.

I had my various progression scan results (after a three hour wait to see my extremely popular new consultant!) this afternoon.

Some shrinking of the tumours in the lymph nodes, everything else much the same. So my treatment is keeping it contained, and the Doc says that most people benefit from this regime for about two years, so I should be alright for a while before they have to start chucking other stuff (I presume) at it. Or maybe I just go downhill after that, I'm not sure to be perfectly honest.

Anyway, all alive today, hurrah!

That sounds good, bitoffun, you’ll take that I’m sure!

Hope a good night’s sleep will help you feel more in balance and less cheesed off, huffy.

Thinking of TQ today and hoping you were able to get those brain mets zapped as planned. And that it was not too uncomfortable or tiring getting to and fro. for you, dear lady.

Have some of my steroid energy peeps! All went well - except for Oxford traffic of course. The small tumour is only having 1 zap so that is now done and dusted. The big one is due 3, and has had one complete one so it won't take as long on Friday or Monday.

Mask very tight - I couldn't open my eyes, but it was all fine. Not scary. And tomorrow I go down to just 3 steroids!

Don't know about side effects - I'm on anti-sickness meds. I guess we wait and see.

Thank you for all the good wishes everyone - they really do help .

One down, great start! So pleased for you, TQ

Had some fantastic news today. Had an MRI scan on Friday and it showed a "complete radiological response" to the chemotherapy. Asked what that meant and was told that they couldn't see any of the cancer on the scan. It's the best case scenario. It also means that I can have a lumpectomy instead of a mascetomy which I'm thrilled about.

Oh gib, that's WONDERFUL! Fantastic news!

THE THEORY:

"1. Plan your questions

Appointments and other chances to speak with your healthcare team can be short. It is good to be prepared, and we have information to help you do that. It may help to write your questions before your appointment. Keep a notebook handy and write things as you think of them, or you can order a free Macmillan Organiser.

1. Keep notes

You can make notes during appointments in a notebook or the Macmillan Organiser. This may help you to remember what is said. You can also get copies of any documents your doctor or healthcare team send to your GP. These might include information about your test results or treatment.

Some healthcare professionals may be happy for you to record consultations using a dictaphone or smartphone. You should ask their permission first." etc. etc.

THE REALITY:

Being so fed up of waiting three hours for your super-popular Consultant Oncologist that you abandon your question list as whingy old bollocks and just slap your thighs while saying "Right then, if that's everything..?" after approximately four minutes.

Great to hear good news from TQ, Snows, BitofFun and gib! *London HuffyPuffy" sorry you are feeling crap, hope things brighten up soon.

I have a bit of good news to add to the good news pile. I saw the oncologist yesterday. Right at the beginning he spoke of 9-123 weekly sessions of Paclitaxel. Of course I heard 12!! Yesterday he confirmed that it would be 9 sessions to after today'[s that leaves only one more next week. Of course there are still 9 months of 3 weekly Herceptin and the sis monthly Zolodronic Acid but they feel easy peasy compared to the weekly sessions especially as I wont need the cold cap for those. He is booking me in for the Radfiotherapy to follow straight on so there wont be a problem with the insurers!!

He wasn't worried at all about the numbness as there are only these last two sessions to go. I cvam away feeling as if it was my Birthday!!

I hope today brings only more good news for all of you lovely people.