Cancer support thread #74 - come in, we're here for you.

[Hippiechick162]

Welcome to the new support thread for anyone who has cancer, at whatever stage of treatment, is worried about symptoms, or is waiting for tests or results.

This is the place to worry, moan, ask questions, share experiences and good and bad news, and celebrate milestones!

If you've got a loved one with cancer then your best place for support is probably on the Life-Limiting Illness board.

Our previous thread iswww.mumsnet.com/Talk/general_health/3760336-Cancer-support-thread-73-come-in-were-here-for-you

Current members, please do introduce yourselves smile

sorry all completely dropped off the thread for a few weeks.
It makes me so sad to see so many to people, welcome and I'm sorry you all have to be in this place that no one wants to be in.

Everything is fine with me. But I am not fine. The calmness (can't think of a better word) is setting me on edge. The rushing around to appointments and waiting for surgery is all done yet it doesn't make me feel better I just feel a bit lost.

I'm 6 weeks post op yesterday. Have a tiny bit of pain if I move in too fast in the wrong direction but otherwise recovering well. I am now officially allowed to eating whatever I want. So after 6 months of absolutely no fruit and veg and 1 month of soft veg I can eat apples again. It was amazing to bite into one.

Spoke to one of my nurses last week as wanted to check the changes to the shielding advice about being allowed out for walks and she said if I was very careful and go somewhere with no people around I can start going out. So have been out about 5 times now, we head to woods generally and take DS for a big walk around he is loving it poor things gets so excited about spotting 'peoples'.
I have a CT scan next week which I know they won't find anything after they have literally just taken it out and it won't have had a chance to come back yet but it still makes me nervous.

Thanks bloody Bridget that does help and I will think of the cancer as a unwanted raider. I see it as a evil knight riding a black stallion. Throughout my life I have had a tendency to internalize stuff and blame myself. I also say 'sorry 'all the time( ie, sorry I have cancer and I'm putting you through this) ,my husband calls it polite tourettes. Maybe know I have cancer I can get therapy, see I can find silver linings!

Hi everyone. I have now become a vampire. Can't sleep at night and tired all day. Still
Haven't heard about appt with surgeon. Nearly two weeks since results. After the flurry of scans appts etc there is suddenly radio silence!

I received a stool sample test in the post this Monday. This was obviously orders by gp after my initial appt but due to Covid put it was put on back burner. Instead I went straight to ct scan and the rest as they say is history. Have to say receiving this knocked me for six as I am now way past that stage. But stupidly I wondered if I should still complete the test and return it ! If it wasn't so awful it would be laughable. Still no appt date to discuss surgery despite my original consultant saying I should hear within the week. I phoned the new consultants secretary who was a bit snotty and informed me that lots of surgery delayed because of covid and she couldn't tell me when I could expect appt. I tried to explain what my consultant said and she said lots of people waiting for cancer surgery's. Yes hello. I'm here. That's me. Can you see my file. ?? do these people bloody understand what we are going through. It's not a fucking hair appt I'm after love. Need to get my rectum seen to...... not my fringe. Do I phone again next week? Or do I wait? I don't know what to do.

Sorry for moan. As I'm not sharing with friends and family i until I have complete picture following surgery I apologise for offloading on you all.

Totally shitty situation. ( no pun intended). Well actually maybe yes. ❤️

@Lizdeflores Totally understand the guilt thing. I have it too. My husband had to turn down work today as it would mean travelling and as we don't know what's on front of us he didn't want to take it. I felt terrible. I felt like I've brought this plague upon my whole family Hence I'm not telling them until doctors can give me exact information. But it's hard keeping this to myself.

Positive thoughts to you. Xx

Positive thoughts right back to you @gilmoregirl I hope you managed to get some sleep. We also made the decision not to all people until we get a full picture, I think that makes me feel I have some control in uncontrollable situation.
Have you tried phoning the cancer nurses re op they !right be more approachable than the consultants secretary even if they can't help they might be more sympathetic. Consultant secretaries can be like gp receptionists on steroids I have spent a 23 year career in the NHS scared of them!
I hope the day brings you some rest xx

Radiotherapy to the spine today to try and get on top of this bone pain

• wish me luck!

Thinking of you today@BitOfFun. ❤️.

@Lizdeflores. That's good advice. If I don't hear by Monday I will try to contact nurse. I didn't get to meet her at last appt because she was with another couple and they were short staffed. To be honest after results I just wanted to get out of the hospital so didn't wait around.

I am fellow NHS worker and know what you mean about consultants secretary's. They are very protective of their doctors to say the least. .

@Squiffy01. Good to hear your getting out and about. Love the way your DS is 'people' spoting when he's out. These times are not easy for the children either. When is your scan next week.

Seen this wee illustration and wanted to share it.

@Squiffy01
YY to eating proper food. My first green salad was mind-blowing, easily the best food on a plate of steak and chips. (Quick and easy. Haven't got the stamina yet for anything needing too much prep. Back aches when I stand for too long.) Glad you are getting out for woodland walks.

@gillmoregirl - my Macmillan nurse is brilliant. He was transferred to ICU covid ward during the London peak, but has been in touch since and is v good at answering the questions I only think of after consultations with my surgeon. Loved your wee illustration.

BooF - so sorry to hear about your friend. There's a special bond between people in the same shitty situation as you. Before lock-down, I met up with an ex-colleague with ov ca and a dh diagnosed with colon cancer just as she was finishing chemo. We talked for 2 hours over coffee, just comparing notes and it was such a relief to be on an equal footing with no pussy-footing around.

@daisypond I think my hospital is a satellite of yours. I've found that teaching hospitals are often ahead of the game in terms of unnecessary surgery. It used to be routine to take out the appendix for my ovarian issue, and I kept being asked by docs at the local hospital why they'd left mine in. Then I read some research which found that it didn't make any difference in long term survival. Hopefully, the same applies in your case. But you do need reassurance on that, or you'll always be wondering.

Best wishes to everyone else.

@BitOfFun good luck and everything crossed that it helps with the pain.

@Lizdeflores i completely understand the guilt thing too. I told my husband to leave as he and toddler would be better off with someone else. Then the guilt I felt when my mum and sister flew over from australia for a few weeks to help out with chemo so my husband could go to work. Mum ended up extending her trip to stay another round which was then delayed so I felt awful for her staying for no reason.

@gillmoregirl i agree with contacting your nurse. Mine have got me a lot further than I ever got ringing consultants and drs. Mine were great at just having a chat when I needed and answering questions but also did a lot of ringing around to different hospitals as I was diagnosed as my local hospital but had chemo at the royal marsden so they would make and cancel appointments and when my local hospital wasn't doing surgeries cause they had too many covid patients they were very on it with checking in and telling me what was happening and they were chasing people so I didn't get delayed.

@Thymeout I am enjoying planning so many veggie stuffed meals. I didn't realise how much fruit and veg I ate until I was told I could have none. I'm hoping getting back on a normal diet will help me lose the ridiculous amount of weigh I have put on beige diet started and chemo and I will be honest me just stuffing my face since lockdown.

@BitOfFun hope the rads treatment went ok for you today, and of course that it helps with the pain.
@Lizdeflores polite Tourettes, that's very funny!
@gillmoregirl it's really bad that you're having to wait so long for an appointment. Good luck with getting in touch with a nurse.
@Squiffy01 I think the transition from having treatment to stopping is very tricky, I've noticed lots of people on these threads have struggled with it. Glad you can get out and eat fruit and vegetables!
M y tablet is being very silly so I'm just going to wave at everyone else and send good wishes.

Thanks for thinking of me today, everyone. It turned out to be a planning meeting, but I had a CT scan too. I'm going through have the actual treatment on Monday afternoon- one big blast this time instead of several sessions. And I'll get a chauffeur again!

The driver on the way home was a normal taxi driver on contract, and he was the loveliest man- we had such a brilliant conversation. I felt like I'd been OUT out, IYKWIM .

@Bloodybridget. It's two weeks tomorrow since my consultant appt. I was told I'd hear from surgeon within a week or two so maybe I'm being too impatient. I'm just scared that covid is reason behind delay in surgery rather than my situation not being priority. Just second guessing everything atm.

@Squiffy01 @Thymeout Thank you for reply. I will phone hospital on Monday. For some reason I hate having to start anything on an Friday cause I will then dwell on any conversation all weekend. I feel better now just having a plan to contact nurse. I really appreciate the advice. Thanks. Wishing all a restful night. 😴

Had a video call with surgeon in Manchester last week .
I was the second one she had ever done and the first one was Hippiechick162 from this thread !
Not that the surgeon knew that information , of course , but Hippie and I worked it out afterwards !
Anyhoo ...she wants to leave the diep reconstruction as long as she can and NHS guidelines are due to my age ( thanks) I will be low on the list of priorities so might not be until end of year or next year . If the skin expander was more comfortable I wouldn’t mind but although it’s not painful as such it is achey .
Off to hospital today for routine bloods and ECG as Herceptin can affect heart .
Our Covid19 rules are considerably relaxed from today on island .
It’s been 24 days since our last case .
Cafés and restaurants are open from today .
No social distancing in shops .
Gatherings of 30 outside .
Borders still shut .
Is it silly that I feel more vulnerable than ever ?
Good wishes to everyone .

Hi all

Not posted for a while. I've just returned from a week-long stay on the ward - a holiday it was not. Had my 2nd cytarabine chemo (4 x infusions over 3 days).

Following the first infusion, I developed neutropenic sepsis and the rest of my time I was alternating chemo infusions with antibiotics. Also had terrible migraine and sickness again.

Today is the first day (barring discharge) that I've got dressed in 9 day - I've probably reached my limit. Bloods and PICC tomorrow and I'm expecting a transfusion as I'm still feeling pretty ropey.

I've got a PET scan on 24 June to check on progress with the hope of scheduling my transplant. Which I'm now shitting myself about

@citybumpkin the injections. The pain can be awful - I take 10mg loratadine daily plus co-codamol/or just plain codeine when I need to. I don't know why an antihistamine helps with the pain relief - it just seems to. My key nurse recommended it.

@InOtterNews Sorry to hear you've been having a crappy time and thank you for thinking of me

Last week was chemo no.4 (last of the big ones). Side effects are mainly tiredness and some aching. Tiredness exaccerbated by DD waking up at 3am today and refusing to go back to sleep. I have swollen veins/phlebitis from chemo no.3 so am now having to self inject with blood thinners which in turn is causing bruising. I'm having a port fitted some time this week. More hair shedding and increasing bald patches. I feel and look a state. Feeling very low/negative about things going forward. DD is amazing. I didn't wait all these years to have a beautiful baby just to leave her.

I am sorry to read about the crappy news all round!

I want to share some positive news, which is that the new drug is working and I’ve achieved the magic >0.1% - latest results 0.098% which is Major Molecular Response (a kind of functional remission). Such a relief!

The (eye watering my expensive) second line drug also has fewer side effects. So even though it was a blow to move one more step down the treatment path, it’s been worth it.

Hi im back and could really use some advice. So when i got the results of my lumpectomy back they said it was 30 mms not 20 so they sent it for an Oncotype test and upgraded me to Grade 3. I got my results back today and my Macmillian nurse says i def dont need chemo as my score is only 23 but i can discuss it with my oncologist on monday when i see her for the first time.
Now ive googled the scores and it states that if you have a score of 20-25 you would benefit from chemo if you are under 50( im 47) so now im really confused. Quick recap- invasive ductal carcinoma right breast. HER2 negative. Oestrogen receptor positive 8 out of 8. Has not spread. 30 mm tumour graded as grade 3.
Its not that im desperate for chemo( Far bloody from it!l) its just ive been told several times i might need chemo/ i might not and they just keep on moving the goalposts as originally i was told if my score was more than 20 i would need it. Anyone been through similar or can give me any ideas how to bring this up with the Oncologist?thanks!

Hi Redannie

I don’t know much (well anything) about breast cancer, but I thought I’d post so you didn’t feel unanswered.

I have only two thoughts - both damned basic

a) prepare a notebook with list of questions, so you don’t forget to ask something (very easily done)
b) remember that some treatments have been affected by COVID, because they do not want to significantly weaken someone’s immune system at a time if widespread and possibly lethal infection. So some treatments were definitely paused/postponed. So perhaps worth asking if COVID was a factor in what you had been told, and with most recent progress in outbreak (case numbers low at present) does that position need reviewing

Hope everyone is having an OK week.

Hi @iVampire I'm in a roughly similar situation to you with a similar treatment plan in place. I had stage 2 IDC which measured 1.2mm and I was also ER+ 8/8. I had a therapeutic breast surgery to remove the IDC and then reshape and lift the breast. After that I had radiotherapy. My oncologist told me that I was under 50 he would usually recommend a further booster session of radiotherapy but he thought it might actually end up doing me more harm than good. It could be that your consultant is thinking along the same lines that chemotherapy might be a more damaging 'cure' than just leaving well alone.

I had more radiotherapy to my spine (bone mets) on Monday to hopefully ease my pain there. I can't say it's kicked in yet- I was still (briefly) in tears with it last night. I just can't find a sitting position that's comfortable.

Peaceanddove- I started the Oestrogen Matters book last night. I'll read on, but first impressions lead me to believe that HRT is safe for women who have been successfully treated and "cured". As my hormone positive cancer is still having a party at various sites in my body, it probably isn't suitable for me. I'll keep reading though, as the whole topic is fascinating. Thanks again for the recommendation.

@BitOfFun I am so sorry the radiotherapy isn't helping with bone pain yet. Is there still a chance it will?
@Chesneyhawkes1 belated congratulations on finishing treatment!
@Trumpton can quite understand you feeling vulnerable, but I hope you will feel able to take advantage of the end of lockdown on IoM.
@InOtterNews you have been having a horrible time, so sorry. Hope you stay OK for a good while now. Of course you'll be on tenterhooks waiting for the scan.
@iVampire terrific news re new drug being so effective! Hurrah!
@gillmoregirl you haven't said, but I wondered if you'd heard any more about an appointment yet?

This thread is just about full so I'm going to go ahead and start a new one. I won't promise to post frequently or keep up with everyone, though! But sending good wishes to all.

Here's the [[https://www.mumsnet.com/Talk/general_health/3941767-Cancer-support-thread-75-come-on-in?watched=1 new thread]