Cancer diagnosis

Hello Janita, welcome to the forum although I am so sorry that you are here because of your recent diagnosis.  This can be a really worrying and uncertain time for you until you have your treatment plan in place, but once it is you will feel a lot more in control.  Having biopsies taken, especially deep ones, can leave you feeling a bit bruised and battered, but hopefully things will calm down a bit in the next couple of weeks until you have your meeting.

And Janita, your family love and care for you; they will be upset but maybe even more so if you don't share what is happening to you.  I completely understand you wanting to protect them, in fact in the early days I honestly thought I could deal with everything without involving my two daughters.  In the light of all the hospital appointments and treatment I had, I must have been daft to even think that.  They know absolutely everything and were there for me to lean on during treatment and helped in so many ways.  You need your friends and family to rally round and support you at a time like this.

And of course, here on the forum just about everyone has gone through what you are about to go through and are here to give support and advice too should you need it.  I will be thinking of you in the coming weeks, please let us know how your appointments go.

Irene xx 

Hello Janita I completely agree with Irene’s advice. I had surgery just before my treatment and it left me quite sore and I purchased the famous sitz bath I got from Amazon which just sat on the toilet and would fill with nice warm water to help soothe and speed up the healing and this will become your best friend. I too remember feeling really anxious before my treatment and was ready to start preparing for my funeral! It isn’t a very easy time worrying about the unknown and we have all been there. This group shows how different we all are in how we fare with regards to side effects and recovery. I am coming up 22 months post treatment and although it’s slightly different I have a great life and basically do as I did before enjoying family and friends. We are a great group of people who have not started, just started, nearly finished and finished. I hope you have a great supportive medical team to help you as mine were really great and the Macmillan nurses at my hospital I couldn’t praise enough. We are all here to answer any questions you need to ask so keep us posted on how you get on.

Thank you Irene,  I will be popping on here often. I do keep my family up to date with all my appointments, I just don't feel I can lean on them emotionally,  I can't bear seeing them upset but as you mention,  this will probably change as time/treatment goes on. Scared about the treatment but ready to start and hopefully get rid of this evilness inside. I'm so glad you have got through and thank you for your advice :) 

Thanks so much Jaycee,  I'm looking into the sitz bath today, feel like I could use it already.  I'm so glad you got through it and here to offer advice to all us newbies I definitely relate to your initial fears xx

Hi Janita, and welcome to our merry band. It's a band no one wants to join, but when the need is there, it's the best place to be. I agree there are some fears that no one really gets except folks who have the same rotten cancer, so having this forum has been a huge, huge relief for me too. I'm glad to see that Irene and Jaycee have addressed the main points about family, Sitz baths and biopsies! While your family needs to know about your fears and hopes and how much and when you need help, there are...er.. details that can share here that we all understand and aren't afraid to hear. 

Hugs

Suz

Hi Suz

Yes definitely,  been a huge help already just reading through xx

Hi Janita ,

Another warm welcome here to the Macmillan online community although I’m really sorry to hear of your diagnosis. I was a little uncomfortable from my biopsy but it really does depend on how deep the biopsy was I suppose, my tumour was only 2mm deep & 2cm in circumference. I went on to have a local resection to remove my tumour around 3 weeks later so I completely understand the discomfort you’re describing. If you’re able maybe soaking in a warm bath would help a little or as Jaycee12 has said using a portable bidet. I must add following my resection I went on to have a course of chemoradiotherapy due to there being only a 1mm clear margin on a small portion of my tumour. 

Please just ask away if you’ve any questions, we’re all at different stages of diagnosis, treatment or recovery here & although there’s common threads that run through treatment, recovery etc., we all have a slightly different experience. We’ve got lots of hints & tips between us that we’re more than happy to share. 

I will be 5 years post treatment in June & have just one more check-up before I’m (hopefully) discharged. I got straight back to living my life following a period of recovery after my treatment & am back doing most of the things I was before any of this happened. 

We’re here to help support you however we can. 

Nicola 

Thank you Nicola and I'm so pleased to hear you are the other side of it. I'm ordering the sitz bath today and going for the pet scan at 1pm, another appointment ticked off.

Ladles,  did any of you loose your hair? Not sure whether to order a wig or not. Also, when you say your mostly living a normal life after treatment,  what are the differences now? Xx

Janita, I had a spot on my lung (then a spot was discovered on the other lung) at diagnosis.  So I had the standard treatment for this type of cancer that has spread, which is a course of carboplatin/paclitaxel chemotherapy.  I had this over six months, weekly for three weeks and then two weeks off.  I tolerated this very well and one of the side effects of this type of chemo is hair loss, I lost everything.  By the time I was ready for the next stage of treatment, the chemo/radiotherapy, my hair had started to grow back, but it was already quite sparse in the beginning and I didn't notice any hair loss at all, and my hair kept growing.

I think that most of those who had the standard chemo/radiotherapy route noticed some deterioration in their hair, but certainly not enough to wear a wig, but I may well be wrong on this, perhaps I will be corrected!

I bought a wig in the knowledge that I was definitely going to lose my hair, and I never wore it - not once.  It was during the very hot summer of 2021 and I couldn't bear the thought of wearing anything tight on my head so had a selection of soft cotton hats that a very helpful Etsy seller made to match my clothes.

I am a year out of any treatment and things are SO much better than they were in the early days which are quite tough.  The differences for me now are bowel habits; I have stenosis in my back passage and my stools, by necessity, are pencil thin so I take a stool softener daily.  Hip ache and heavy legs, I was very fit prior to treatment and now find stairs an effort, but have been referred for physiotherapy as my GP thinks it is muscular.  Fatigue, I have to rest more than I did before and still sleep 8-9 hours a night.  But I am back to walking about three miles daily with my dog, the loo urgency which was a feature of the early days after treatment has all but gone except for first thing, and life is good.  Oh, and my hair is back to normal! I still have a very short urchin cut as my daughters loved it so short but I have lost the curls I grew after the first course of chemotherapy.

I have given you a snapshot of me, but I had a lot more treatment with a different chemo regime initially.  There are many on here who have been much less affected, and there may be some who have different changes to deal with. 

The forum was invaluable for me, not least because of those who have stayed around long after their treatment ended to give hope and encouragement to others.

Really hoping that everything goes well for you.

Irene xx