The leper

WARNING - primary breast cancer patients may not want to read this, and if you do, don't say I didn't warn you!!

Benefits

I'll begin with this one.... So yes, I certainly get a fair share of the NHS budget spent on me, and so it should be, but one thing I don't benefit from, is benefits.

I don't get child allowance (or whatever it's called now) for obvious reasons, I don't use the school system, I don't claim tax credits (as, again, without kids you're not entitled to anything), I don't claim unemployment benefit, I don't claim benefits full stop.

But I thought this should change. I have therefore commenced an application for personal independence allowance (or PIP), which used to be the disability living allowance, because I am now classified as disabled.

I filled in a huge form which asked me about how I'm impacted on a day to day basis with my condition e.g. can I cook for myself (well no, cos I'm crap at it!!), can I dress myself, can I get from A to B cognitively etc etc.  It took ages and it made me realise when I was completing it, that things are different for me now and I do struggle with certain things more than I did before.

Then, this week, I had to have a face to face assessment where someone working on behalf of the Department for Work and Pensions visits your house to basically go through pretty much the same questions.  She was with me for an hour and half, she was really nice, but did the classic - 'oh, my Uncle X had advanced lung cancer and he lived for years' - like  you can really compare me to that situation?!  Anyway, we carried on talking and when she asked me how Tim was coping, I broke down in tears.

Tim continues to be totally amazing, but can you even begin to imagine what he must be going through as the husband of someone who has an incurable, life limiting illness???  It must be soooo unbelievably difficult. 

He is, in fact, seeing a counsellor for this very reason at St Richard's Hospice which he is finding really helpful.  It is an exhausting and draining process as anyone who has ever had any sort of counselling will know.  He goes into work then goes to see her on Tuesdays at 10am, and then back to work afterwards.  I can't tell you how guilty that I feel that he is having to do that, it's because of me, and I sometimes struggle with that if I'm honest, but I'm so glad he's getting an opportunity to discuss this with someone completely objectively.  Also, big up to St Richard's Hospice who provide the counselling free of charge. They are amazing.

Anyway, we then carried on with the assessment and she told me at the end I'm very unlikely to get the benefit as I'm too well and not immobile.  I mean, I know I'm not immobile, but surely there must be something that I'm entitled to with my condition, so I've been in touch with Macmillan as they have their own reps in the Citizens Advice Bureau and they are calling me on Tuesday to discuss things.  Particularly, I want to get some advice about my pension, as I know I've mentioned before, I think it's terrible that I can't access that now, as I'm unlikely to reach retirement age.  I'll keep you posted....

The colony

But back to the main subject of today's blog, and it's a difficult one, but I did say this would much be a warts and all account of how I'm feeling and what I'm experiencing.

It goes something like this....Sometimes as a secondary breast cancer patient, I feel like a leper. 

Let me explain....

When you have primary breast cancer, the last thing you want to hear about/consider/believe is secondary breast cancer, for very obvious reasons. And I was one of those people...I just wanted to shut myself off from listening to stories of people (sometimes even of those that I knew) who had developed secondary breast cancer because of the gravity of what it means.

You've already faced 'death' in the face once and you just want to look forward after your treatment and start building a life again, and slowly you do.

After eight years, I had done just that and had honestly started to believe that it would be possible for me to live to an old age.  Suze and I often talked about growing old together and still going out for prosecco when we were old and wrinkly.

Also, as Susie often says herself, in terms of the 'odds', because my cancer was caught early and I had no lymph node involvement at all, that 'on paper' it would have been more likely for Susie to get a recurrence (as she did have lymph node involvement in her diagnosis), but THANK GOD, that is NOT the case and literally TODAY (10 Dec) she has celebrated 13 years cancer free which is THE BEST NEWS.....WAHOOOOOOOOOOOOOOOOOOO.

But anyway, I am now a member of an online secondary breast cancer patient sub-group of the Younger Women's Breast Cancer Network on Facebook.  At first, I didn't like to look at it too much as I was still coming to terms with my diagnosis, but now I dip in and out of it and it's good to 'chat' or read info about people going through the same treatments as me etc.

However, as I am also a member of the YBCN main page, there is obviously a lot of chat on there about women 'kicking cancer's ass' and 'I'm gonna get through this' and 'another year clear' etc etc... and I used to be EXACTLY the same, it's called HOPE, and it's a wonderful thing, but sometimes there is part of me that wants to warn people, 'you never know what's around the corner, look what happened to me'.  What a total bitch that makes me sound!!!  And I know there is unlikely to ever be anyone whose had primary who doesn't worry about such things, but thankfully as the years goes by, this feeling gets less and less, and long may it continue for all out there.

But I am the leper, I am the person whose condition many primary cancer patients don't really want to know about or acknowledge or pay attention to, and I TOTALLY get that because constantly worrying about recurrence can send you down a very deep rabbit hole.  And all of them will naturally, always worry about recurrence....I mean as soon as you have a pain in your big toe you think it's come back. Jeez... There is a lot of love and support on the forums for primary sufferers who may be going to see their consultants for check ups, or dealing with scanxiety and a lot of 'we've got your back', which is awesome, and I used to feel that same love, but the leper in me may not always be welcome in that group anymore.

And I really, really, really hope that it doesn't come back/morph into secondary, but statistically (and I don't know what those statistics are as I never wanted, and still don't want, to know what they are), some young women will fall into my leper sub-group and that fucking sucks.  I really wish it was the end of it and that anyone facing primary breast cancer would never have to worry about it, but sadly, this is unlikely to ever be the case.

So I will carry on as best I can and people can choose to read this or treat me as the leper that I have become and ignore it entirely, and I wouldn't blame them, but I feel forever grateful and thankful that my amazing friends and family who have stood by me (some who have also suffered from primary breast cancer) don't treat me like a leper and will let me talk about things as much or as little as I like.

I love you all. xx