Cancer Support Thread #80 Newbies Welcome

[HumphreysCorner]

Welcome everyone old and new. Feel free to post a quick update to help new and old follow.

HC x

@quinin thank you for your reply.

@quinin I used simplywigs.co.uk because they had a bigger range of wigs in a large size than anyone else I could find, and because there was one style that was close to my natural hair. There's a wide range of styles, sizes and colours to go for (some with darker roots for a more natural look). It needed to be ordered from the US but arrived 2 weeks after I ordered as they said. I also ordered some turban style headwear which are all very good quality and the bamboo ones are lovely and soft.

I was able to remove the VAT at checkout to bring the cost down, and although it wasn't cheap I figure I'll be saving a fortune on hairdresser's costs over the next 6 months or so.

@Bakewellisntjustacake that is appalling. I will sign too. X

@grateful3 I had the oncotype testing in my case it indicated chemo would not be beneficial/necessary so I only had radiotherapy and hormone blocker, Tamoxifen.

@Bakewellisntjustacake that is just shocking - so appalled for you.

I've mainly been reading and not posting as I wasn't in a great place having to wait 8 weeks for surgery on the lump in my abdominal wall which was pea sized but is now much bigger. Its a new tumour seeded from the biopsy The psychologist helped and I've tried to live rather than just counting down the days but am now back to being scared about what will be found as surgery is tomorrow. Doesn't help that lymph nodes on groin have started hurting this week. Sending love to everyone going through treatment

@KitchenFishCurry thank you for your reply.

@Bakewellisntjustacake have you thought about going to the press? I was on BBC news back in the winter about the delays in Cancer diagnosis and Hugh Pym was brilliant. Could you email him? I’m sure he would be interested. Also your MP should be stirring up a fuss to get the NHS trust to prioritise cancer patients. If not they are a disgrace. The hospital staff and the government and NHSEngland all know there is a massive wave of delayed cancer diagnoses coming soon.

I had a weird dream last night that I was in France on holiday and I left the van on the beach in Bretagne and the tide came in and flooded it. When I found it again it started again but I was famous all over France and had mysteriously lost a week of my life and was found in Paris.
I can’t think what this means except maybe I am Blondie and should have my highlights put back now my hair has been growing for six months!

Energy levels are still fluctuating but I am doing lots more so it’s not surprising. Today is a rest day thankfully after three days of cycling and gym.

@balkanscot I am going for Herceptin 17 and Zolendronic Acid 2 on Saturday and I can already feel the anticipatory nausea building. Good luck with your trip. I’m sure we get PTSD from this experience.

Regards to all, may your treatments be painless and the results all good.
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Hi there. Can I join the club that no one wants to be a member of please. I am due to start 4 cycles of CAPOX chemo next week following a bowel resection 8 weeks ago. I guess I am looking for support from those who have "been there". Friends mean well but I am getting a lot of reaction and input which is not entirely helpful. I think this is based on people's individual feelings and fears about cancer, but for now I just want to be proactive and deal with the facts.

I found this bowel cancer early and flagged symptoms to my GP fast. I chose surgery over "watch and wait" and for that I am grateful in light of the pathology results which showed 3/13 lymph nodes involved. It's an unusual story, apparently, as the initial polyp was a T1. CT shows no spread to other organs, thank goodness.

It's all so unreal and strange as I feel as fit as a fiddle right now!

I'd really like to hear from others who have been through similar.

TIA. X

@Kittyshopping Hello and welcome, sorry you find yourself here. I don’t have experience of bowel cancer but I know others do, I have had ulcerative colitis for years though.
Settle down and vent away when you need to, we do understand.

I had reiki this morning which was wonderfully relaxing but I have felt very dizzy on and off since. Thankfully not fallen over but definitely wobbly.

Hello all,

Popping in to wave at everyone - those I know, and those I don't. So sorry to read so many are still going through this slog of a journey, and shocked to read about some of the obstacles which have been thrown up. As if fighting cancer wasn't bloody hard enough!

I had my final SafeFit session today and shed a tear - my instructor had been so fantastic. She started with me during chemo when I could barely move, and has really helped my recovery. I will miss her so much.

I'm also here because I am stressing and I know people here will understand. The other night I removed my toenail polish after seven weeks (I know - am slovenly) to discover a dark red mark under my big toenail. Sent a pic to the doc and he wants me to come in next Wednesday to check it out. Of course, I am immediately thinking it is melanoma or a secondary cancer. It's almost exactly a year since my diagnosis and I cannot believe I am stuck in this limbo again. I know it is probably nothing but I have been driving DH mad with my worrying so thought I would offload here where I know you all get it. Has anyone heard of secondary breast cancer manifesting as melanoma?

@OrdinaryLife hoping your surgery went well and you're resting and comfortable.

@Kittyshopping welcome to our lovely friendly group, so sorry you find yourself here. I have ovarian cancer but there are other ladies here with bowel cancer who will be able to help you.

@AlbertCampion I can completely relate to your feeling stuck in the limbo again, I had the same experience in recent weeks with a liver nodule which turned out to be benign but I felt right back to the start which for me was over a year ago. I have never heard of secondary BC manifesting as melanoma and I did read recently that melanoma is very rare and most GPs will see only one or two in a career. I'm really hoping your toenail turns out to be nothing.

@AlbertCampion Hi Albert. Nails get pretty peculiar after chemo and it takes months to grow out the effects. Couple of weeks ago my big toe nail partially collapsed and got a bit bloody but is still hanging in there and I am just being careful and not removing polish hoping it can grow out. It might be an old injury like that. They happen so much more easily now.

Two and a half hour wait to get a blood test yesterday ! This is a record for me so far.

Thanks @FizzyOrange and @Acinonyx2. My logical brain says it is nothing but my emotional side is wobbly. I long for the time when I can stop catastrophising! How are you both doing? xx

Hello, another reluctant joiner to this tread, awaiting appt next week to get treatment plan finalised - looking at OP in 5 weeks. Quick summary:
Diagnosed with BC (stage 1, Her2Neg) last week. I'm 51, married with two teenagers. I've had no symptoms, no lump, no changes, and the routine mammogram last Nov. gave me the all-clear, but I was invited to an imaging study for women with 'dense breast tissue'. Long story short, after 2 mammograms (with contrast), 2 inconclusive Ultrasounds and 3 MRIs with contrast (the last one for a biopsy), the biopsy has finally found cancer. Up to this point everyone was really positive along the lines of "don't worry it's probably nothing we just have to make sure and do another check", and my mum also has a history of benign cysts in her breast so I was not overly concerned. I'm glad they persevered though!
The tumour has not changed in the last 4+ months. So that's good, but I will have a Mastectomy plus radiotherapy, but hopefully no chemo. No sign it has spread yet either. I know my prognosis is good but I'm still in shock.

So right now I'm in this limbo period. Told my husband and my best friend but not my teenage daughters as they will want concrete answers regarding dates. Ditto work and my parents who live abroad and who I have not seen in person for 2+ years. I was planning on visiting them soon, not sure I can manage that now, but maybe I should try!

As the tumor is very elusive - last Friday they could still not see it on the US despite knowing it was there, I will probably have to have a total mastectomy rather than a partial one with reconstruction. Currently waiting for the haematoma from the biopsy to go down so they can have another good look and decide the best course of action.

There, thank you for listening. My husband is not very talkative so I may just have to come here to offload at times.

Hi @NewlyDiagnosed. We are both newcomers here. It's a bit like moving to a different country. Sorry to hear of your BC story so far. I think, as others have said, that once a treatment plan is in place we at least get past the unknown. I'm impatient to start my chemo next week and I have a pre-treatment chat with the oncology nurses tomorrow.

Hi @Kittyshopping thank you for the welcome, hope you have a successful (?) meeting tomorrow. I had a phone call discussion today but need a proper face to face meeting next week (which was already planned).
Yes about the different country - I am reading up on what to expect at the moment and it seems like everything changes in one way or another. I'm quite resilient so I expect to be fine in the long run but I suspect there will be bumps along the way. Really not sure how to talk to my parents, it will be by phone, they're currently 'on holiday' (in their home country) and don't use mobiles and only occasionally switch their laptop on to check email, so this will have to wait till the end of the month I think.

Yes, @NewlyDiagnosed, telling loved ones is hard. I'm a little bit older than you (59) and my parents are both deceased. However, one of my adult children is a doctor and there is no hiding the facts from him! He's a great support but I try to keep the boundaries clear between medic and son. I have a lovely therapist to talk to and I find that is the place I can say the "unsayable". I am somewhere between optimistic and realistic if that makes sense.

Popping in to welcome new folk: hope you find this thread a space to vent and get support, maybe even to have a chuckle

I've been on a city break with DP sans DC and went in the hot tub even though my skin is still a bit dodgy from radiotherapy. I've just put on extra moisturiser as there was no way I wasn't getting in the tub after traipsing about in that hot spell.

I've found I need some physio on my shoulder but not the side I had the mastectomy I think I've been over-compensating by using the "good side" and have symptoms that sound like rotator cuff injury. I've got my second Kadcyla next week. I'm going back to one of my voluntary roles as now the DC back in school and the major treatment over, I want to do some normal stuff again. I just hope my rubbish stamina levels can take it.

@Bakewellisntjustacake Really heinous situation. Will sign petition.

@AlbertCampion I have dark marks and stripes in/under my nails and they are ripping off really far down. I think they take ages to grow out the effects of chemo. Hope it turns out to just be a chemo thing.

@thereisonlyoneofme Was your wait for a blood test in a clinic where they knew you were a cancer patient? One of my chemo nurses told me if I went to a walk-in clinic to say I was a cancer patient and I would be given priority but I've not tried it yet.

@TopOfTheCliff When you described your dream I thought of Marianne Faithful rather than Blondie, & the song about driving through Paris in a sportscar with the wind in her hair (the Ballad of Lucy Jordan)

@NewlyDiagnosed welcome to our lovely thread, so sorry you also find yourself here. Feel free to offload here as much as you need to.

@thereisonlyoneofme two and a half hours is awful!

@AlbertCampion I'm ok thank you. I finally had my appointment with the oncologist yesterday who is putting me onto Niraparib as maintenance chemo very soon. I was feeling uneasy after our call as my last CT was at the beginning of July and my maintenance has been delayed due to this liver nodule so I was feeling worried that something may have 'changed' in the interim. I had a call from the CNS this morning to say that the oncologist has subsequently decided that I will need a CT before this maintenance after all and now that doesn't suit me either! I really don't know what I want, well I do know, I want not to have cancer.

@AlbertCampion melanoma is really black not red so it is unlikely to be that. I was a GP in Devon where skin cancer is very common and we saw it a lot sadly. You are describing the changes of chemo under the nails. Mine did the stripey thing too then they became very fragile and I just noticed this week they are getting strong again 10 months after my last FEC-T dose. Don’t be too hard on yourself it is easy to get frightened after all you have been through.
I met my trainer yesterday for a review of progress with fitness and weight and she has yet again told me to slow down and be patient and wait till my Herceptin has finished and my body is no longer under siege. Permission to continue eating cake a bit longer! Hooray

@HauntedDishcloth now you have got me thinking about sports cars. We had the discussion when @thereisonlyoneofme was looking at nice cars to cheer herself up. I really don’t need one and I am a bad driver! (Fast and reckless)

Off for a romantic outing with DH as it is 10 years today since we met on a dating site! He is a good’un!
Regards to all
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@Kittyshopping

hi! I'm coming up to 2 years ahead of you. Hemi-colectomy 31-10-19. No symptoms. Tumour in transverse colon. Picked up by chance during routine monitoring CT for an ovarian episode, the last one I was due to have, so a massive stroke of luck.

Sounds as if we both had a bit of a setback with post-surgery path results. On the scan, mine was T1, no mets, no nodes and EMVI neg, but the lab came back with T4 and EMVI positive. This put me into a grey area at the riskier end of Stage 2 and I was offered chemo as an option. (It's since been downgraded to T3, but no idea why.)

My lovely surgeon said Onc would tell me projected benefits, but prob not worth it at my age (79) unless over 2-3%. It's high priority for me not to be catapulted into a world of carers and Zimmer frames. There are fates worse than death when you're my age. Oncs were rather put out that he'd said anything. One said 3%, the other 5%. So in the end I agreed to go ahead.

Had 4 cycles of Capecitabine, no infusions, just tablets until covid intervened. Stupid NHS IT system, separation between primary and secondary care mean there was no way of avoiding plague-pit of hospital for blood tests. 3rd onc agreed with me that algorithm had changed and more risky to do remaining 2 cycles than stop at 4.

CAP on its own is less brutal than the ones for bc you'll read about here. For me, no hair loss, just a bit of neuropathy in fingers. But tiring. Cumulative, so you go on feeling drained for some weeks afterwards. Don't know about the oxyplatin. 3rd Onc did say that recent research showed that the combo was most effective in earlier cycles so don't worry if you need to finish early. 1st onc showed me a graph which showed an impressive improvement in 5Yr survival for Stage 3. A lot more than 5%.

Glad you've recovered so well from surgery. I'm not back to where I was. It was my second major abdominal surgery in 5 years and shielding led to lack of exercise which has delayed recovery. Wasn't even allowed out to walk at night. Back muscles have to do all the work of keeping me upright so walking and standing are a bit of a pain. Shops have removed chairs and Malls have taken away benches. But onwards and upwards.

Good luck with the onc nurses tomorrow. I found it helpful to get names and numbers so you can ring with any queries.

Thanks so much @TopOfTheCliff and @HauntedDishcloth - think you are right. I just feel like I have come so far since chemo and it seems a lifetime away in some ways - it's a shock when my body reminds me that it's still feeling it!

So sorry to hear about the delay caused by the CT, @FizzyOrange, although I guess it's good that they're being thorough. Have you had the appointment through for it yet?

Just wanted to share the news that I feel normal again, a week after my first chemo. I called the oncology nurses on Tues and they had me in for blood tests on Wednesday. It felt like an out of body experience walking through the hospital when so tired. Blood tests were all fine but they thought I was dehydrated so I had a saline drip for the afternoon and then felt much better. I've been trying to keep my fluid intake up since, and this morning I think I'll be able to drive and do the school run. So nice to have some energy again.

Hearing the way the nurses were spoken to by old misogynistic men in the chemo ward was an eye opener. They just laughed it off but I was horrified. No-one would get away with that in my line of work.

Today's new chemo symptom is a raw sore mouth. This morning's toast may be my last for a little while. I love toast.

@Thymeout, sorry to hear you have been through so much. You sound very resilient. Thanks for the info on chemo. I will know more after my intro appointment this afternoon. We are never alone in these struggles and forums like these are so helpful. I have tried to stay away from random googling for information!